tag:blogger.com,1999:blog-10122186001925280122023-11-16T05:58:36.824-06:00Cyndi's AVM journeyCheck out my Pictures at the bottom of the page!Dulcehttp://www.blogger.com/profile/06600161748075718477noreply@blogger.comBlogger167125tag:blogger.com,1999:blog-1012218600192528012.post-56432891229526836112014-07-25T16:44:00.001-05:002014-07-28T19:40:48.318-05:00July CO trip 2014Hi everyone! It's that time again - going to write all about our adventures after this last trip to CO! Celia was starting this trip with me, and as soon as we walked into the airport to the SouthWest counter, I get excited greetings from one of the ladies behind the ticket counter! Merrilee is so supportive, I asked if she would take a photo with me to put in my blog! <br />
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Also was recognized by security @ metal detector - the CC Airport employees have gotten used to seeing us so often!<br />
We arrive in CO about 3:30 p.m. and head to the car rental place. Once we got the car, we headed to the hospital so I could get checked in! Since it was late in the afternoon, Admitting was closed and Dr. Yakes office was<br />
too and his patient coordinator told us I would be a direct admit through ER. First we made a quick stop @ Safeway for some snacks before I get stuck in the hospital!<br />
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Celia took this photo w/her I-phone - the view from my room!<br />
Soon as we put the luggage down, Celia stayed a bit, but I know she had lots to do as well, so I told her I'd be fine on my own. I was on the 7 North as usual and I'm familiar with the nurses and techs! Celia had dinner @ The Copper Pot, across the street from the hospital then went to check in @ the hotel.<br />
I had plenty to keep me entertained - Celia surprised me with the Pope book and one of my co-workers had lent me a book called The Breath of God - turns out I had forgotten I own it and it's in my Nook!<br />
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I'm also re-reading the Diana Gabaldon series of books, as the first one called Outlander will be a series on STARZ next month! I'm about half finished with the second book in the series called Dragonfly in Amber.<br />
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So the original plan had been for me to get admitted Monday evening, then be taken to have an angiogram Tuesday to see if there was any trace of avm left. Lately I had been experiencing blood running down the back of my throat and I was afraid that would happen while I was under anesthesia. I was talking to Dr. Yakes, P.A., Kelly about it - and she said as long as the inner cuff was inflated, then I wouldn't have to worry about blood going down into my lungs. The plan was to see what the angiogram showed with the possibility that Dr. Yakes would do an embolization if there was a trace of avm left. I'm supposed to be "done" and this was for a routine check up after being in the completed stage. I hadn't had anything to eat/drink since Monday evening and I wasn't taken in for the angiogram until 4 p.m. Tuesday! Luckily Kelly told one of the nurses to go ahead and let me have some clear juices and jello until 10:00 am. so I would have some food in my system! I was now in OR and had just moved over to the bed where the procedure would begin and I could tell I had blood coming down the back of my throat. (Here is a good shot of Dr. Yakes right before he started my embolization)! <br />
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I sat up until it passed and next thing you know, I'm waking up in my room. I heard Dr.Yakes used 15 cc's of alcohol injected in to the left side of my face and even used some coils! I was struggling to breathe when I was waking up from anesthesia - like I couldn't completely draw a full breath, only shallow breathing. I kept praying that the feeling would go away, it was hard to talk - turns out because that balloon on the inside of my trache had not been deflated! I know I mentioned it to Kelly before going to surgery - but maybe they kept it inflated in case I had more bleeding so it wouldn't go into my lungs. In either case, I was also not able to get out of bed until 11:00 p.m. to make sure the groin stick from the angiogram was healed enough. <br />
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Meanwhile part B of the plan on this trip was that I would have the debulking surgery with Dr. Robinson the following morning, Wednesday. The nurse answered the phone when Dr. Robinson called and Celia was in the room with me as well - and I made it clear that there was <em>no way</em> I was having another surgery right after the one I just got out of! I was so <em>uncomfortable</em> and wondered why I wasn't getting Decadron (steroid) in my IV to reduce the swelling from the alcohol Dr. Yakes used! I asked 2 different nurses to check my chart and make sure they hadn't overlooked the order to give me that Decadron I needed! It was hard to swallow, much less try to talk! About 4:00 a.m. one of the respiratory techs came in and I asked her if the balloon inside my trache was still inflated. She said it was and I talked her into deflating it so I could start to breath better! After she left the room, I got up and got my own Prednisone (steroid) that I had with me - just had to get that swelling down inside my mouth!<br />
Meanwhile I coughed a couple of times and started more bleeding - had about 3 of those episodes right after surgery! I would end up spitting out blood clots in the sink. Ugh! Can you imagine if I would have had that scheduled surgery and having all the bleeding right after the first surgery? Apparently these bleeds I was having after surgery were the result of the alcohol embolization that Dr. Yakes did. It was strange because I went in to have the bleeding down my throat stopped - yet I still bled about 4 times after the surgery. Guess that area needed time to heal - had a couple bleeding incidents once I got home, but they were less than what I had after the procedure while I was still in the hospital.<br />
First thing Wednesday morning, Dr. Yakes and Dr. Robinson came into my room to find out how I was feeling and why I had changed my mind about the debulking surgery (on this trip). Dr. Yakes was telling me that I was already scheduled and people were expecting me in OR, etc. I could barely talk and was still struggling to breathe well, that I just couldn't see going under again so soon and possible wake up even <em>more miserable</em> with my head all wrapped in bandages and a tube on the side of my neck to remove fluids. Celia hadn't gotten to the room yet from her hotel, otherwise I could have gotten a great shot of both doctors! It's a huge production trying to put these appts. together - especially when it involved two very busy docs! I managed to ask Dr. Yakes why I wasn't getting any Decadron and he said there was an order in my chart! We later found out that there was two charts for me, the one under Dr. Yakes name and the one under Dr. Robinsons name! The latter chart didn't have an order for Decadron but the first chart did, but that's not the one they were looking at! Finally Mandi and Kelly came in my room and told me they had straightened out the problem and would begin giving me Decadron through the IV. Most of Wednesday I was still struggling to swallow and breathe - and Celia had agreed that it wasn't a good idea to have had that second surgery. She changed my flight to be able to leave with her on Thursday - otherwise my ticket back home wasn't until July 29, the following Tuesday! Mark was going to fly in on Saturday and then knew if I had the debulking surgery, to expect to be in the hospital until Sunday. Then take a couple days extra in CO in case I needed anything from the doctors.<br />
To boot, my brother-in-law Jim and his wife Shelley would not be able to take our kiddos, since one of their furry kids was sick. So the week before this trip, I checked out a couple of places where we could board the kids! Went to the place on the island where Celia boards her pets, but they weren't open on Saturdays and that's the day Mark would have dropped them off! I had already checked out Barkaritaville Pet Resort, but took Mark a couple days later so he could get a tour. <br />
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The kids were up on their immunizations and luckily Mark found that paper work - it was done through the City Vet. We still ended up taking Hanz and Bella to our regular vet to get the kennel cough and flu shot and they needed a fecal exam! Oy vey!<br />
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Back to my adventures in the hospital .... my favorite tech, Alex came in my room! Celia told him, "glad you came in to see her, this is the first time she's smiled today"! </div>
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He's such a cutie - he plays along when the nurses and I tell him he reminds us of Taylor Lautner in the movie Twilight, so he'll sign in on the dry eraser board as "Taylor". Poor kid, shortly after he came in and gave me a hug, I started having a bleeding episode! He ended up helping on of the nurses put me in a new gown since I got blood all over the front of the one I wearing! Those things have so many snaps, the nurse and Alex were able to put a new hospital gown on me and let me keep a sense of modesty! Ha, ha!</div>
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You know after I got out of my first procedure Tuesday night - I never got to sleep. The following day (Wed.) Kelly found out I never got to sleep, so she ordered something to knock me out - Celia says I slept hard for about an hour - I know after that I didn't sleep @ all until we checked out of the hospital!</div>
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Dr. Robinson had asked if I was staying in town long enough where maybe I would change my mind and go ahead with the surgery with him. You know, if I had gone in for that angiogram early in the morning and only gotten say, 5 cc's of alcohol instead of 15 and no coils like Dr. Yakes used - if that darned ballon had been deflated and I had been getting the Decadron, I <em>might</em> have been able to have that second surgery that was planned - but I was so miserable - there was just no way I could see myself going under anesthesia again while I was struggling to catch my breath!</div>
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So, Celia was able to change my flight and cancel Marks, so he wasn't going to have to fly to CO and that meant we wouldn't have to board the kids! Yay!</div>
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Here's my Velcro baby Hanz, sleeping with dad since mommy was in CO! Here's a cute shot of Bella, she likes sleeping in her original baby bed while her head hangs off the end of it!<br />
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So now we were able to get home Thursday evening (5 days early for me)! I missed my babies so much! The nurses @ Swedish ask for Hanz and Bella because they know how much they mean to me! Most of them have pets too, so it's nice sharing our furry kids with each other!<br />
Ok, I'm going to stop blogging right now - it's too quiet around here, but I have a feeling Mark is in bed and both dogs are with him! I'm sure I'll remember something else about the trip and add it later!<br />
Until then, thank you all for your prayers, love and support! Got a lot of positive comments from my Facebook friends on my avm t-shirt! Ok, take care and hope all is well with all of you! I'm guessing I'll return to CO in a month or two to start that debulking surgery. We'll see.<br />
Thanks for keeping in touch!<br />
Cyndi<br />
P.S. I just have to add that I wouldn't be able to handle this journey without <em>all of you</em>! I am surrounded with an incredible support system, between my family, friends and co-workers! Thank you for understanding that I'm just not functioning @ my best right now, but we're getting closer to being there! So much prayer, faith and love ease this journey for me a bit - because have no doubt, it's been a very rough road for such a long time!<br />
My husband Mark especially is a saint! Well.... for the most part! :> ) Mark takes super care of me and knows exactly what to do to make me feel better! He works all day, then comes home to take care of me, make dinner and take care of our furry kids, Hanz and Bella! Guess I'd better finish this so I can get my things ready and head to work! Will keep you posted!<br />
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Just found this photo of Dr. Yakes on Facebook - that is so cool! We'll call him Yoda Yakes! Dr. Y has a wonderful bedside manner - makes everyone feel so special and well cared for!<br />
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Dulcehttp://www.blogger.com/profile/06600161748075718477noreply@blogger.com0tag:blogger.com,1999:blog-1012218600192528012.post-37042175505117865152014-05-10T19:54:00.002-05:002014-05-18T19:23:48.200-05:00May 2014Hi Everyone! Wow, it's been a while since I've written! Mainly because I had taken a break from going to Denver! Our main concern of course was getting rid of the bleeds, and Dr. Robinson (DDS and Plastic Surgeon) did that by cauterizing the capillaries in my gums! It took a while for me to adjust to not having to worry anymore while I was eating a meal, or brushing my teeth or having a bleed in the middle of the night! So, after taking time emotionally, physically and mentally, I was ready to get back to CO! <br />
About a week before my appt. time, I get an e-mail from one of Dr. Yakes P.A.'s - Mandi Shaw, that she was very excited that I would be there next week! I just can't emphasize enough how awesome everyone @ Swedish is! I had posted on Facebook that I would be there the following week, and immediately got a response from one of the nurses (Laurie) @ Swedish, also looking forward to seeing me! They make their patients feel so great and well taken care of!<br />
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Mandi</div>
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Laurie</div>
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Marks brother Jim and his wife Shelley would be taking care of our kiddos while we were gone a few days. For me that's the worst part of the trip, leaving Hanz and Bella! We took them to see the Easter Bunny this year! They're familiar with Santa Claus but this was their first time with the Easter bunny and they were not too happy!</div>
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Anyway, soon as we arrive @ the Southwest counter @ the airport, the clerk recognizes me, "Hey! Haven't seen you in a while"! I've been flying to CO for so long, I get recognized @ the airport! Flight took off and we landed @ Houston Hobby airport. Mark and I like to sit across the isle from each other, that way each of us gets an isle seat - Mark for stretching out his long legs and me for being claustrophobic. So we board the plane in Houston - the passengers were almost all on board and @ the last minute, a lady asked if she could sit in the seat next to me (middle seat) since the window seat was already taken. I said yes of course and didn't realize until she sat down, that a big part of her was spilling over to my seat! Yikes! I looked @ Mark and whispered, "I'm going to need a Xanex"! He was going to stand up and say something to one of the attendants, but I shook my head no. Well a few minutes later, the attendant that boarded us, called Mark and pulled him aside several feet away. He asked Mark if I was his wife, and would I mind moving to the empty seat that was between Mark and the gentleman already @ the window seat. I do not like the middle seat, but didn't have much of a choice since the rest of the seats were taken! Oy! After moving across the isle, the middle seat didn't seem so bad after all compared to where I had just been! Turns out the flight attendant told Mark he would give us a $100 voucher for the inconvenience. Once we landed and went to the Southwest counter, the attendant gave us an extra $100 voucher - cool! We can certainly use that on our next trip!<br />
Took the shuttle to the car rental area and picked up a vehicle. Headed over to Ted's Montana Grill since it's near the airport where we have befriended one of the waiteresses there! Turns out Michelle used to live in Calallen! She is the sweetest person, the kind that would give you the shirt of her back! I keep in touch with her on Facebook but hadn't seen her in a while, so it was great visiting with her again!<br />
I had a mushroom swiss bison burger with sour cream and avocado and Mark had a bison burger called The Kitchen Sink and it included ham an over easy egg and avocado and who knows what else!<br />
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Headed to the Safeway grocery store near Swedish to pick up some snacks before being admitted. Ran into another nurse that recognized us from my stays @ Swedish, so visited with her a bit! We finally got to Dr. Yakes office - I had brought Becky, the patient coordinator, one of my favorite things - a Circle E candle called Bird of Paradise! She is such a doll and helps me so much when I set up my appointments! Kelly and Mandi were both there and Andi (all Dr. Yakes P.A.'s) is the one that had me doing my admitting paperwork. We waited a while in their reception area, as we were told my room wasn't ready yet.</div>
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Finally we're told my room is ready and are lead to the 5th floor. WHAT? I always stay on 7 North - that's where all my peeps are! We were going to be put in a room waaaay on the old part of the hospital. Oh no! I immediately protested - nothing against any of the nurses on 5th floor, but I just couldn't imagine staying in that room! Mark was making himself comfortable right away, but I walked out of the room and around the corner, playing a game on my phone while I thought things through! All this time I didn't realize that the nurses on 7th had seen my name on the schedule and were saying that they knew me and I had to stay on their floor! One of my favorite nurses, Dave Labadie (part of what I call my dream team - the first group of nurses that ever took care of me @ Swedish) is now in an administrative position on 7 North and he must have gone to the Nursing Director, because next thing I know, she is introducing herself to me and saying that they will manage to put me on 7 North! </div>
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Dave Labadie</div>
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I hated to act like such a brat, but as long as I've been going to Swedish (11 years) I always stay on 7th floor and have become so familiar with everyone there!</div>
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I was happy to see Becky, another favorite nurse was on duty! She was happy to see me as well - she is a super sweet!</div>
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Had a new nurse on duty that I had never met named </div>
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Sariet! The other nurse with her hand on her waist is April and she says I have to get in line behind her to "adopt" Alex, my favorite Tech as a little brother! I brought him a t-shirt that says "Don't Mess With Texas"! Alex is a real sweetheart! He is very encouraging when I tell him about the surgeries I still need, by saying "baby steps".<br />
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Alex</div>
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Here is another nurse that came by and was excited to see us! It's so great being there, just knowing how well you're going to be taken care of!<br />
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So, finally settled in for the night - since we would only be staying a few days, Mark would stay with me in my room!<br />
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Anyway, of course I couldn't eat or drink after midnight since I would be having a couple of procedures in the morning. I kept asking when I would be taken for the MRI, so I could make sure the nurse could give me some valium since I'm so claustrophobic and hate being put in that tube! Laurie (the blonde nurse pictured above) was on duty in the MRI area, so it was nice seeing her! All this time I've been having problems with my allergies and have been trying for several weeks to get rid of my hacking! I had already had 2 shots and 2 rounds of z-pack antibiotics with my primary care physician here - but turns out, since I had a low grade fever, anesthesia decided it wasn't a good idea to put me under for the angiogram I had scheduled, with possible embolization if there was any trace of avm showing up. I got to see my favorite anesthesiologist, Qin, so that was cool! Back to my room and I just wanted to eat! Started snacking on the sugar cookies we had gotten @ Safeway and Mark went and got me a Venti Carmel Frappucino for the "trauma" of having the MRI! LOL! Yum!</div>
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I ended up getting some potassium through my IV, as well as iron and 2 units of blood! </div>
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I almost forgot to mention that on this trip we were able to meet one of Marks second cousins, Elizabeth, who volunteers @ Swedish! Now that we've had so many trips behind us and we know what to expect, we were able to relax and take time to enjoy visiting with Elizabeth! She is very knowledgeable about the medical field, as she works in a Hospice. She came by my room on her way home from work and stayed a bit, but wish we had more time to visit with her! Maybe next trip!</div>
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We also had a visit from an older lady from one of the nearby Catholic churches. She asked if we would like to receive communion so of course we said yes! We prayed and had a nice visit with her.</div>
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Later in the day, Andi came by and said that since I wouldn't be having the Angiogram after all, she really couldn't justify my staying another night in the hospital - in other words, the insurance wouldn't pay for it. Yikes! We immediately called the Marriot Suites that give us a hospital rate and luckily they had a room available! Packed up our stuff, stopped @ Wholefoods to pick up something for dinner (found the latest issue of a magazine I like)</div>
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and checked in to the hotel! Settled in to watch American Idol and relax before my appointment with Dr. Robinson the following day!</div>
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Meanwhile, my phone didn't seem to be working! I shut if off and on several times, but could tell something was wrong because I wasn't getting any notices on Facebook!</div>
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In the morning, I got up really early, took a shower and once Mark was ready, we headed down to the free breakfast the hotel offers! We had plenty of time before my appt., so Mark and I headed to Sprint to have them look @ my phone! Had to leave it there an hour, so we went to have lunch @ the Cheesecake Factory! Mark had the avocado egg rolls</div>
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and I decided to do something I normally don't and ordered a pina colada to go with the sweet tamale corn cakes with avocado that I usually order!<br />
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That restaurant is located @ the mall in the Lone Tree area, so we walked around a bit - we like going to see the puppies @ the petstore! Don't know what this is, but Mark took a picture of it!</div>
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It's finally time to go see Dr. Robinson for a consultation, so we had a nice visit with him! He was happy to see how my lip/chin area had healed that he worked on in Nov./Dec. He's thinking he wants to start debulking the area under my chin! He knows there are some coils in there that still need to be removed. This will be a tough one - it will be hard to know how long I'll need to be in the hospital after the debulking. There are several surgeries that need to be done, so this will all be done in stages!</div>
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Here's my Hanz - has to be near me while I'm blogging, so I put him on the stool next to me!</div>
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After Dr. Robinson's appt., we headed to pick my phone up @ Sprint. They had told us they would have to reset it, so it was a pain having to go after some of the programs I had already installed, as the only thing that transferred were my contacts and photos! Went on to return the rental car and head to the airport for what we thought would be our 4:50 p.m flight. We got there a couple of hours early - and next thing you know, Mark gets a notice on his phone that the flight has been delayed to something like 5:10 p.m. Not too bad we're thinking, we were just concerned about making our connecting flight in Houston taking us home to Corpus! There was a couple more delays and we didn't leave Denver until about 7 p.m.! Guess what that meant? Yup. Missed our connecting flight by 5 minutes! Had to get on a shuttle to take us to a hotel where we spent the night until the first flight available to get us home - 10 a.m.. the next day! Our flight should have originally gotten us home @ 11 p.m. and I had hoped to go in to work on Friday! Since it wasn't looking like that was happening, I called my PCP and had them make an appt. for me to see my ENT, hoping Dr. Zane could give me something else for my hacking! I was thinking about how much I wanted to see my furry kids and now I had to wait another night!<br />
We finally board our plane in Houston the next day, and that had already been delayed once! Had to call my ENT to tell them I'd be an hour late! The one good thing that happened was that I met a really nice person on the flight! Her name is Leone Lewis and we had lots to talk about, because she also has pets! Just wish I hadn't been hacking the whole time, but I really enjoyed talking to her! I gave her one of my blog cards and she gave me her number so I could send her a cute dog cartoon I had!<br />
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I recently joined a group on Facebook called I love My Brussels Griffon and I love it! We all talk dog and post photos and comments on our Griffs! I just had to share a couple of photos with you! This one I thought was hilarious - the Griff gets on the Roomba vacuum and rides around on it!<br />
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Here is that same Griff with a Roomba hangover! Lol!</div>
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Here is another of my favorite Griff photos - her name is Chloe and she has her own Facebook page with her two maltese siblings - look up Harvey, Bonnie Bow and Chloe for some great photos!<br />
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Ok, I really have to go! Hanz has already been swiping @ my ankles to get off the computer! Mark went to some concert with his brother Jim, so I've already heard the kiddos hooowling for daddy @ least once!<br />
Thanks so much again to everyone for all your love and support! Couldn't do this without you!<br />
Love and Hugs!<br />
Mark, Cyndi, Hanz and Bella!<br />
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Dulcehttp://www.blogger.com/profile/06600161748075718477noreply@blogger.com2tag:blogger.com,1999:blog-1012218600192528012.post-89190551880717152572014-01-18T14:01:00.000-06:002014-06-07T12:30:01.341-05:00Dec. 2013 - Second lip surgeryHere I am again! How are you? Happy New Year! Hoping everyone had a safe, happy holiday season! I've been wanting to blog for a while, but so hard finding time! If I'm not in a "writing mood" it won't turn out the way I want either, so .... I've asked Mark to try and entertain Hanz, as he's usually swiping @ my ankles to get my attention while I'm on the computer! During the week of course Mark and I both work and I miss Hanz and Bella all day long - when I get home, I can't wait to spend time with them! It's the reason I don't play games on Facebook (who has time?), because then I feel like I'm neglecting them! I'll sometimes be standing in front of the TV a few minutes, and I get the "rump bump" from Hanz! Stands on his hind legs and with his front paws he bumps my behind as if to say, "pay attention to me Mommy"! Love my furry kids! They enjoy being our shadows and follow us everywhere! Hanz is taking a nap so he can stay up late and watch The Golden Globe Awards with me this evening!<br />
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Ok, so had to go back to CO a couple weeks after my first reconstructive surgery with Dr. Robinson mid-November, because my lip came apart after he removed the sutures since the tissue in the area wasn't healthy. <br />
Mark and I left Corpus Christi early and then ended up having an hour delay in Houston! Luckily, it didn't interfere with our connecting flight. But look who got on the plane in Houston - this nice lady had her furry kid with her - an Affin Pincher named Cooper! Such a cutie and very well behaved! That breed is like a cousin to the Brussels Griffon, like our kids! Bella would never sit still if we ever took her on a flight, she's be running up and down the isle and licking everyone! Hanz would be wagging his backside, just thrilled that there were so many people to have fun with! Yeah, like they would allow them out of the seat/carrier - funny!<br />
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Finally arrived in Denver and could not find the name of the car rental in the paperwork we had with us! Celia had made the arrangements and printed out the info, but none of us had noticed that we could not find the name of which rental place it was! So that took a while - I think Mark asked one of the people @ the airport that help lost passengers find their next flight - anyway, all that was making me late to get to my appt. @ Dr. Robinson's office, so we could go over a few things before surgery in the morning! The snow was still holding on - this photo is outside Dr. Robinsons office! </div>
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Soon as we were done @ Dr. R's, we headed to the hospital to get admitted!</div>
There wasn't time to try and get everything arranged to have Dr. Robinson do the surgery @ Swedish as he did in November, so this would be our first time in a different hospital where Dr. Robinson normally practices called Sky Ridge Medical Center! It is a <em>beautiful</em> hospital and everyone is so gracious and makes the patient their top priority - like @ Swedish!<br />
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Since it was right before Christmas, there was poinsettias everywhere!<br />
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Since it was after regular hours, I was admitted through the ER, and while I was still in the middle of that process, I got a call from one of my besties that lives in Dallas! She was calling to wish me luck on my procedure which I thought was so thoughtful! Patty and I have known each other 40 years - I like to say we met when we were 1, but we were actually more like 12 and 13! Said she would call back once I got settled in the room so I could finish getting my paperwork done. Patty and I used to have sleepovers while we were still in middle school, and we used to stay up late talking in the dark, playing silly games like, "who would you rather marry, Donny Osmond or Andy Gibb"! For laughs we'd sometimes change it up by saying, "who would you rather marry, Tiny Tim or George Goble"! Some of y'all reading this won't know who those people are, but moving on ....</div>
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Got settled in my room, getting everything lined up as far as getting Respiratory to come in and set up the humidifier water/hose for my trache, had to get blood work to get a cross match in case I needed a transfusion during surgery - you know, all the fun stuff that goes with that scenario! The nurse had been in and out several times, super nice - good sense of humor... so @ one point I was sitting on the bed with my back to the door and I heard the door open, and someone said, "who would you rather marry - Justin Bieber or Russell Brand"? I remember thinking, WHY on earth would the nurse be asking me that?! I turned around and was so shocked to see my bestie Patty! OMG! I could <em>not</em> register it in my brain because we had already had such a long day in airports, Dr.'s offices, car rentals, etc. and in my mind I'm going, "Ok, Patty lives in Dallas (well, Frisco) and I <strong>know </strong>I'm in Denver! I think. I had no clue that Patty had called my sister Celia and Dr. Robinsons office to get all the info she needed to surprise me! She was in Denver for a work conference and thought she'd drop by to say hello! Isn't that <em>awesome</em>? I hadn't seen her for several years, but we always keep in touch, and I had no clue when she had written me an e-mail prior to my arrival asking for details about the hospital and all that she would be dropping by! It's things like this that make it a little easier to keep on going when there are times that I just feel I can't take any more trips, surgeries, bleeds or whatever goes with this avm nightmare! It was such an incredible feeling knowing Patty took time out and went out of her way to make me feel so special! She's such a doll - brought me a box of Godiva chocolates! Oh, and since Justin's a little young for me, I had to go with Russell Brand - ha, ha!</div>
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It was such a long day for both of us and Mark takes such great care of me - poor guy, exhausted! Could not handle any of this without Mark - he always knows what to do to make me feel better. Mark does all the cooking and takes such great care of Hanz and Bella! He feeds, bathes and grooms them - picks up after them and takes them out for walks! Sometimes I can go on the walks too when I feel well enough to keep up! All I have to do is love them, hug them and tell them how much I love them!</div>
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So, here are a few photos of me right before surgery!</div>
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With the anesthesiologist -<br />
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Surgical nurse - check out her cap! Dr. Seuss!<br />
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One of the things Mark liked about Sky Ridge Medical Center (SRMC) is that in the surgical waiting room - there is a screen with updates on how patients in surgery are doing! I forget what my number was, but you get the gist!</div>
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Here I am after surgery!</div>
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Here is a photo of the stitches once the dressing was removed! Dr. R. was happy to find some healthy tissue a bit lower down my chin!<br />
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Dr. Robinson wanted me on liquids and no talking for a couple of weeks @ least. Huh. He said it was just his precautionary advice. He was able to remove the stitches in my gums from the November surgery, so that was good!<br />
Can't remember how many days I had to stay in the hospital - but I do know I had a pseudomonous infection (which isn't surprising since my lip had been all opened up), so got some IV antibiotics while still @ SRMC. I believe we had a couple days after being released before our flight home, so I came back to SRMC a couple of mornings to get more IV antibiotics! I had posted this next photo on FBook - had to laugh when I saw this Suggestion Box down the hall from my room - because Sheldon on The Big Bang Theory is always filling that suggestion box @ his place of work! I hadn't realized I was wearing my Sheldon t-shirt until after I saw the photo!<br />
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Day two of outpatient IV antibiotics. Of course we arranged for Walgreens Infusion to deliver more antibiotics to continue @ home! One of the nurses from Christus Spohn Home Health came by the house to get that started for me after our arrival. Luckily I only needed the antibiotic once a day and Mark is a wonderful nurse, so he took over doing that for the next few days!<br />
Unfortunately, the meds made me nauseous, plus, having to be on liquids didn't make me feel any better! UGH!<br />
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After I was done getting my IV meds, Mark and I would go to Barnes and Noble for a little while. Or to get a few things @ Whole Foods - love that place! Check out the gingerbread house!</div>
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We made sure and spent a little time @ Swedish - ran into these ladies dressed as clowns doing volunteer work! We stopped and talked to them for a while and I gave them my blog card - asking them to check it out when they got a chance! It's wonderful knowing how many people take the time to help others and try to cheer them up by getting all dressed in their costumes and handing out cute stickers to the kids!</div>
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Then it was finally time to head home! Here's Mark @ the Denver airport!</div>
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Once we got through security and settled in @ the right gate for our flight, I made my way to the food court area to get a smoothie! The clerk that took my order was a doll - she totally let me have it for free! Thank you so much!</div>
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Couldn't wait to get home to our furry kids! Look @ Bella - she adores Mark and is so happy to be with her Daddy!</div>
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We just adore these two - Mark calls them monkeys!</div>
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I'm on an avm support group on Facebook and wrote a comment on there the other day and next thing you know, I get a reply from a fellow avm-er and guess what? She had recently started seeing Dr. Yakes and lives here in Corpus Christi, TX! She knew there was another patient in town, because Dr. Yakes has a world map in his office with pushpins showing where avm patients that come to see him are from - and there was a pin on CC, TX! So, made plans to meet up with Amber Brown - Mark and I wanted to give her the benefit of all our experience, even though our avm's are in different areas - there's so much to learn when you start treatments! Amber is super nice and we've since kept communicating! She also has furry kids, so she totally gets that about us! Amber shares our love of everyone @ Swedish and thinks Dr. Yakes staff is awesome too!<br />
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Oh! Can't forget that Mark celebrated his birthday New Year's Eve! His oldest brother Jim and his wife Shelley that live in Rockport, took him out to lunch at a Mexican restaurant! Mark had texted me the photo since I was at work - and I asked him if a shot of tequila came with the hat!</div>
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Mark had been wanting to see the latest Lord of the Ring series movie, so we ventured out to do that the day after his birthday! Here we are waiting for the time to be let into the theater!</div>
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I rarely go anywhere besides work, the grocery store a few blocks away and sometimes to Barnes and Noble to get free WiFi for my Nook for the free Friday book offered! Those outings are tolerable because I'm only there a <em>short</em> time. I just don't feel well enough to be out for a long movie and due to never getting a full nights rest and all the meds I'm on - I fell asleep several times during the movie - Mark had to nudge me awake! I realized that since 2008, the only movies I had ventured out to see were the 5 Twilight ones! I remember falling asleep while I was waiting on that last one to even begin! Took a steroid to keep me awake during the movie!<br />
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My co-workers are <em>extremely</em> supportive and I appreciate that so much! One of my probation officer friends down the hall from my area has a couple of Yorkies and she had company over the holidays (her cousin's girlfriend from Austin) that brought her Brussels named Romeo! She grooms him herself - cute!<br />
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I was asked by a co-worker the other day when I was going back to CO. Realistically - our goal was to at least stop the bleeds, which it seems that Dr. Robinson has done by cauterizing the capillaries in my gum area where the bleeds were coming from. I am still recovering from that Dec. surgery, and I need a break from the whole thing! I'm sure it's hard for anyone to imagine how difficult these trips are - especially now since we started surgeries with a new doctor. Reservations need to be made for flight, car rental, hotel; insurance to be verified - my secondary insurance never paid anything stating these surgeries were not medically necessary! I still have so many things that I need to have "fixed" in order to function normally and I just don't know if that will happen! If Dr. Robinson had a hard time finding healthy tissue working on lifting my lip - I can't imagine what will happen when he wants to start working under my chin area! There are still coils in there that need to be removed and several other issues that still need to be resolved! I am very blessed to have so much love, prayer and support - but it is emotionally, physically and mentally <em>draining</em> to go through this process! I just want to give up completely sometimes, no longer having the strength and will to endure any more! Not to mention, just tired of constantly not feeling well and having people stare at me like I'm a freak when I'm out in public! That does a lot to your self worth! I battle anxiety, depression, insomnia @ night - but at least it seems the bleeding is no longer a problem. That used to be a<em> huge</em> problem!<br />
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My primary care physician, Dr. Boynton, removed half the sutures approximately 3 weeks after my surgery, and then the rest of them a week after that! Want to make sure that area heals well, so Dr. B. prescribed some oral antibiotics to prevent an infection and some Tamiflu for me - hoping to avoid the flu Mark battled for almost a week! Dr. B. also prescribed some wound care for me to give that area where the stitches were the best chance of healing! I've been seeing this group of techs for a long time - they work out of Corpus Christi Medical Center, that is the hospital several blocks from our home! They were very impressed with the photos I showed them of how Dr. Robinson had lifted my lip and how much better I looked since the last time I had seen them for wound care! I was catching up on everything with the techs and sharing photos from our phones and I've been wanting to show you the group of people that have helped me so much! There was times I would drag myself in there first thing in the morning before work for my wound care appt. and not in the best mood because I was going through - but these folks are so caring and professional, I always left with a smile! This photo one of the techs shared with me was taken during Halloween! I've no football knowledge, but Kelly is #48 and the main one that usually does my wound care! I remember the tech on the lower right corner telling me she has a friend that years ago had her leg amputated to get rid of an avm. What can I say, I can't cut off my head! Facial avm's are extremely delicate and complicated - but I am so grateful for people in the medical field that help patients like me that need them so much!</div>
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Showed one of my football fanatic co-workers the photo and she was able to tell me what team each jersey represented! The closest I'll be getting to football is maybe tuning in to the Superbowl at half time because Bruno Mars will be on! It's award season and <em>my</em> superbowl is the Oscars! Already caught the People's Choice Awards, The Golden Globes and tonight - the Screen Actors Guild awards!</div>
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Loving American Idol this season, with another of my favorite people - Harry Connick, Jr. is now one of the judges - cool! I'd love to see him perform live one day, as well as Taylor Swift! I used to want to go see Randy Travis, but unfortunately I don't think that will ever happen with his health issues after suffering a stroke. Never got a chance to see Ray Price and now he's gone.</div>
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Here is a photo of a Brussels Griffon we saw at the Vet not long ago named Minky! There aren't many Brussels in Corpus Christi, so we love running into people that also have one! Minky looks like a cross between Hanz and Bella! I want to say this lady has two more Brussles at home that are male!</div>
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I keep in touch with another Brussels owner on FBook and she lives up north! She has several - and one day she said she opened the door to throw some bread out for the birds, and her Brus ran out into the snow going after that bread! Look at this adorable photo - those eyes! </div>
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Here's the other two she has! They're actually a little family - she has a male and female that had 2 puppies and she kept one and her mom has the other puppy that she brings over often! She has a couple of videos on U-tube of her kiddos - I post one on my Facebook page and the other is called "Brussels is a good boy" if you ever want to view it - cute! You can hear her accent when she pronounces the word chair (sounds like chayah). I went to college in Miami a few years and there were a lot of kids from the Tri-State area, Boston, Rhode Island - and I had forgotten how cool it is to hear accents - you don't hear that down here really. Ironically, as long as Mark has lived down here, (over 30 years) he sometimes gets asked where he's from - I don't hear his accent at all, but I really do when we speak to one of my sisters-in-law that still lives in OH!</div>
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We recently had some <em>very</em> cold temperature for South Texas and that does <strong>not</strong> make me happy! I'd <em>much</em> rather be hot (you can always strip and get a frozen Mark-a-rita) than be too cold and have to bundle up with several sweaters, jacket, gloves or whatever it takes to keep warm! Saw this when we were having that polar vortex and had to share!</div>
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You know I always like to add some humor to the blog - this was posted by a friend of Moms on her FB page!</div>
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Ok, I think I'll throw in a load of wash and then come back and try and figure out how to flip those photos so they show up the right way!</div>
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Much love to all of you! Thank you for all your love, prayer and support! I have no idea what my future holds as far as my health - I just want to take time to heal a while! I appreciate you keeping up with me!</div>
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Cyndi</div>
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Dulcehttp://www.blogger.com/profile/06600161748075718477noreply@blogger.com2tag:blogger.com,1999:blog-1012218600192528012.post-41230898480444490052013-12-30T20:31:00.000-06:002013-12-30T20:31:31.021-06:00November CO Trip 2013 Hi Everyone! <br />
How are you? Did y'all have a good Thanksgiving? As always, my sister Celia sets an elegant table with wonderful gourmet recipes for all the side dishes! Greg fried one turkey and baked another! Davis was here from California, Mark came in from San Antonio and my co-worker/friend Diana also joined us! I know she was happy to finally meet Mark and Davis since I talk about them so much! My family is grateful to Diana for always being there for me when I've had bleeds @ work! Blood doesn't scare her and she's offered emotional support as well!<br />
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Ok, on to all the all the fun I had this past trip to Denver!</div>
This will be my first surgery with Dr. Randy Robinson who is a dentist and plastic surgeon! My sister Celia started this trip with me, and since it would be a long trip, Mark will finish it with me until we fly home! We arrive in CO, Nov. 18th & it's 65 degrees! Got the car rental and headed to hotel to check in! <br />
Had a late lunch @ Ted's Montana Grill and I was hoping to see my buddy Michelle that is one of the waitresses @ the restaurant! Wouldn't you know it, the hour she went home was the time we were there! Celia and I both ordered the bison meatloaf with mashed potatoes and squash on the side!<br />
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Hey, remember I told you about that t-shirt Jim had made for me? (Actually he got me 2!) That's what I'm wearing in the photo - it says, "It's an avm - Google it"! So tired of people staring @ me all the time!<br />
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Don't know why Celia and I hadn't thought of this sooner, but I slept in one of the sofa chairs with my feet on the couch @ the hotel! Worked out much better for me than trying to prop myself up with pillows on their too soft mattress! We never were able to get Apria to bring over any air humidifier/compressors for my trache, so Celia bought a couple of small humidifies @ Wal-Green's hoping they would help!<br />
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So, the next day, Celia and I headed to Dr. Robinsons office for my consultation appt. This would be my first time meeting his staff, so we were excited about that!</div>
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Dr. Robinson has a wonderful, bedside manner. He hugs, so that's nice! Super nice man, very intelligent and compassionate. Told him I was tired of looking like a freak, and he hugged me and said he would be helping me!<br />
We needed to get an updated x-ray of my teeth, so here I am with Randi Valleti, Dr. Robinson's nurse!<br />
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After that we headed to Park Meadows Mall and had lunch @ the Cheesecake Factory! YUM!<br />
I'm trying to do this in a hurry before we have to leave again for CO - more about that in a bit!<br />
So later that day I report to Swedish, and right away, I saw one of the admitting clerks, Darlene and she gave me a big hug! Went up to Dr. Yakes office to say hello and talked to Becky, one of his patient coordinators for a bit. I think the other P.A.'s were busy with patients. I know one of them was out on maternity leave!<br />
After getting all my paperwork in order, headed up to 7 North, the area I usually stay in! One of the first people to welcome me was Zufan - one of the techs that's been there a while and has taken care of me - she is from Ethiopia. As I was waiting for my designer gown and things in my room, I was checking my Facebook account and noticed a fellow avm-er had just written that she was arriving in CO! Wow! I was super excited to know I may have a chance to meet up with Ashely Stanley from West Texas! I had been writing to her on Facebook for a bit now and she was having an embolization with Dr. Yakes the following morning!<br />
The nurse told me I would probably be taken to surgery about 6:30 a.m. and Celia said that was too early for her, so she would be seeing me later in the day! I had asked her to have something ready for me to write with and on in case I couldn't speak after surgery. Anyway, the time comes and I was transported to ambulatory care. I asked one of the nurses if Ashley was anywhere nearby - and she was so she came over to where I was laying in bed waiting to get to be taken to surgery. It was so great meeting her - she is so sweet! After I got a chance to visit with her, one of the anesthesiologist that had taken care of me before, Wendy, came over to say hello! I remember before getting the trache I was having a hard time opening my mouth very wide, and Wendy said she had lain awake the night before one of my procedures, worried that she wouldn't be able to intubate me for surgery! Then the hospital Chaplain came in and we were talking, when Dr. Robinson came in! He asked what was going on and the Chaplain said we were about to pray, so Dr. Robinson shut the curtain around us and we all held hands and prayed together! Right after that, Dr. Yakes peeked in to say hello! Wow, I was thinking I wished Celia were there to take photos!<br />
Here I am shortly after getting out of recovery and meeting Ashley! <br />
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Dr. Robinson also worked on the puffiness under my left eye, so I have an ice pack to help with the swelling!</div>
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I've had so much going on, I haven't had time to blog like I normally do and really want to get this out - so I'm popping in lots of photos and may tweak it here and there later!</div>
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Isn't it crazy how many hospital bracelets I had on? Yikes!<br />
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See how Dr. Robinson lifted the left side of my lip that used to have some partial paralysis from the embolizations to get rid of the avm? He said he's lifted it for now and later he'll make it pretty! Looks better than it used to!<br />
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Here I am with my favorite Tech @ Swedish - Alex! He's a cutie! I want to bring him home to be my little brother! Ok, I even cropped this and it still came out sideways - sorry!</div>
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Meanwhile, while I had been in surgery, it snowed and snowed in Denver!<br />
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This is not normal for us to experience this since we live in hot, humid South Texas!Since we were going home a day or so afterwards, Dr. Robinson removed the sutures and unfortunately, due to the tissue in that area not being healthy, they didn't take and my lip started falling apart!<br />
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I ended up having to tape my lip all up until I could get back up to CO to see Dr. Robinson 2 weeks later! If only the sutures had taken, I would have been doing great! I understand it took Dr. Robinson 3 hours to remove 11 teeth and he did run into some bleeding issues. I honestly went in to the surgery not knowing whether I would survive it - but Dr. Robinson was able to get the bleeding stopped - I needed 2 units of blood and he cauterized and lasered any capillaries needing it. Found out later that I received 2 more units of blood - I vaguely remember the nurses coming to check on me and my breathing was very shallow. They were having a hard time waking me up and I guess with all the meds I was on, I was not happy that they were trying to wake me up and I got my cell phone and called Mark @ the hotel to tell him to tell the nurses to stop it and let me sleep! I didn't realize it was 5:00 a.m. and Mark said I called him twice! Thank God these nurses are so excellent!</div>
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Ok, I'm posting this and will continue another blog entry after my return trip to CO a couple weeks later!</div>
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Here I am with Dr. Robinson in the hospital!</div>
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Oh! Here is a photo of my brother-in-law Jim - he and his wife Shelley take care of our kiddos while we're in CO! They live out in the country and our furry kids have a blast chasing their cows along the fence line! Hanz gets along really well with their outside dog Bessie! As much as I miss my kids while I'm gone, I know they are in the best care with Jim and Shelley!<br />
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Ok, everyone - hope you had a great holiday season and not sure when I'll get to blog again, so if I don't talk to you soon - Have a Happy New Year!<br />
Love to all!<br />
Cyndi<br />
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Dulcehttp://www.blogger.com/profile/06600161748075718477noreply@blogger.com0tag:blogger.com,1999:blog-1012218600192528012.post-21439060471877877302013-11-09T13:20:00.004-06:002013-11-11T10:37:26.156-06:00Halloween 2013Hi Everyone! How are you? As always, I have my good days and bad days - forever trying to keep bleeds under control by keeping my blood pressure under 130/80. Apparently, anything higher than that, has me bleeding from the capillaries in my gums that I'm hoping Dr. Robinson will start working on in a couple of weeks! Until then it is physically and emotionally exhausting! My PCP had me double the dose of Clonodine I take every six hours and while that's working better ... it also knocks me out! Hard to stay awake @ work since I'm constantly staring @ a computer monitor and exercising my eyes with constant reading!<br />
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We're still battling Humana (Marks work insurance), while my work insurance has approved my procedures. So none of that has changed yet.<br />
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Did everyone have a fun Halloween? I had been wanting to have some costumes made for our furry kids - my sister graciously made time in her <em>very</em> busy schedule to do that for me! Mark and I chose the fabric and trim and they both already had their crowns - so here's a few photos of when Celia was working on their costumes and the kids once they were all done! I added some sheer, gold lace trim to the ends of Bella's cape! Mark had found a cabbage patch baby doll on the roof of one of the city buildings and I told him I should have wrapped the baby in a blanket and dressed Hanz and Bella again and they could have gone as William and Kate, Duke and Dutchess of Cambridge and Prince George!<br />
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Here is a photo of a great dane named Shadow in the Corpus Christi Dog Group! Love it! I've always wanted to find a Frankenstein head costume for Hanz and have Bella be the Bride of Frankenstein - that would be awesome!</div>
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Mark put this alien mask on and scared Hanz and Bella! They did not like it @ all and barked @ Mark until he took it off! He went next door to the neighbors where they sat in the driveway and handed out candy to the Trick or Treaters!</div>
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Ok, I tried cropping this photo several times hoping it wouldn't come out sideways, but didn't seem to work! Oh well.<br />
One of moms good friends put this on her facebook page and I really liked it! I added a comment that said, "... and don't you forget it!"<br />
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Oh, I had mentioned in my last entry how my brother-in-law Jim had been taking a wood carving class with Mark - and here is his completed project! It is an intricately designed cane that he gave his dad George! It is impressive with so much detail! Wish this were a better photo - it doesn't do it justice!<br />
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I had hoped to dress up for Halloween in a hard hat and tool belt and say I was "Under Construction"! Unfortunately, we're not allowed to wear costumes to work and I was home that day anyway, having had a bleed and had my mouth packed in gauze most of the morning. </div>
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Here is a great photo of the lovely, fellow former avm-er Shalon Whitgob as Wonder Woman! She got a co-worker to go along with her to be her Superman friend! Shalon was a life-saver for me - she helped me see I was not alone in what I was going through, and set my blog up and paved the way as she had her debulking surgery once she was done with her embolizations! She's the sweetest, inspiring person - full of love and fun and she too has an amazing husband - Joshua that has been right beside her through her avm journey!</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiV-ioo3_EygyelB5PpFJQ1aAhaoZNzqHihcpcMT28Cw0KfX4K1Y5EbReu1oiF5H5-rTN24Y74hT1YCWhsnCKQ0pPOIkfop3bSmZ7SmQkvgAUd75yATR2aHuAI4VysJYbjPHnZvigaVMr2P/s1600/Shalon+Whitgob+and+co-worker.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiV-ioo3_EygyelB5PpFJQ1aAhaoZNzqHihcpcMT28Cw0KfX4K1Y5EbReu1oiF5H5-rTN24Y74hT1YCWhsnCKQ0pPOIkfop3bSmZ7SmQkvgAUd75yATR2aHuAI4VysJYbjPHnZvigaVMr2P/s320/Shalon+Whitgob+and+co-worker.jpg" width="320" /></a></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjTQhNg9rHePxT5A2RIfhczh0MS611ArJLI_hJEECckffxHf4OZtl9sm4Kl0pTC3GewFdm55SjCnVvavANF0Vn-YEIk0kmI5zVlTU-WeiVwBcjqFOCpuYOxK9tXOQH3T20iT2KSWq1kqhYV/s1600/Kids+Halloween+2013.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjTQhNg9rHePxT5A2RIfhczh0MS611ArJLI_hJEECckffxHf4OZtl9sm4Kl0pTC3GewFdm55SjCnVvavANF0Vn-YEIk0kmI5zVlTU-WeiVwBcjqFOCpuYOxK9tXOQH3T20iT2KSWq1kqhYV/s320/Kids+Halloween+2013.jpg" width="180" /></a></div>
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I follow the gang from The Big Bang Theory on Twitter, and Kaley Cuoco posted this photo of kids dressed up like some of their characters on the show! Leonard, Penny and Sheldon! Adorable!</div>
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As always, I like to put a little comedy relief in the midst of too much avm stuff! Here are some fun things I've found on Facebook!<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj7S4ULCOpLSANgj_kmi-MM6wpCRlipmgIl2v1EUDhNPxxqHu4CjwTNZfmjlF903Dl2PVSWmfhchOk9bsrCjUhSxrOrbLz-WhduRNOXJLBJDJjU-c_itTrva3rhxuh_LRFhS9yDU8Ai9aD9/s1600/Chicken+wing.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj7S4ULCOpLSANgj_kmi-MM6wpCRlipmgIl2v1EUDhNPxxqHu4CjwTNZfmjlF903Dl2PVSWmfhchOk9bsrCjUhSxrOrbLz-WhduRNOXJLBJDJjU-c_itTrva3rhxuh_LRFhS9yDU8Ai9aD9/s1600/Chicken+wing.jpg" /></a></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiZR9F3Ximb78Gf-Rut8MFeXpoO6OTGNeZ9bh-Shya43T3RodTeYkMMsSPZtWeFGcysetxbKSuS-jouB6IHZ8MoQYM8t6rT1f7yh17CA_CC1PT6SqDRJSqd7HkfMxG14i-2Q-FzCrCCQe4w/s1600/Crazy+dog+lady.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiZR9F3Ximb78Gf-Rut8MFeXpoO6OTGNeZ9bh-Shya43T3RodTeYkMMsSPZtWeFGcysetxbKSuS-jouB6IHZ8MoQYM8t6rT1f7yh17CA_CC1PT6SqDRJSqd7HkfMxG14i-2Q-FzCrCCQe4w/s320/Crazy+dog+lady.jpg" width="213" /></a></div>
Our favorite subjects - our furry kids! Here's Bella looking as if to say, "Again with the camera mommy?" It's hard to catch her sitting still, she's usually on the move and my photos of her are a blur!<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgsGxilaTu99tlCww8bV0BrSK9vzb22h925LCtilxaKCHCLleMsRFR9seLDbk1DbYLIqpjqsbg7vZZ6fYh8dZeSDDVPLs_Sl_sxWV8cgGeyGY-0-QIhXCzWdX9xMzS4eIzn8aiemWrqZ8hY/s1600/pretty+Bella!.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgsGxilaTu99tlCww8bV0BrSK9vzb22h925LCtilxaKCHCLleMsRFR9seLDbk1DbYLIqpjqsbg7vZZ6fYh8dZeSDDVPLs_Sl_sxWV8cgGeyGY-0-QIhXCzWdX9xMzS4eIzn8aiemWrqZ8hY/s320/pretty+Bella!.jpg" width="218" /></a></div>
And our sweet boy Hanz! He's mommy's angel! He loves to climb on my lap when I get home from work and sniff me out to see where I've been and what I've been eating!<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiyUpcBYPCouUkHPWw8hCQk7Kbw61Xi7PtG1VgufHaw0teqdGO83POgaMm_Zjli_Lcbkk2c_3ye4RCWycPs13XASB8rkmKNutVHOv_kiGnBcNJyLgjwf8v4eZEru_5VZ3tl9mUVR6t9EjQW/s1600/sweet+Hanz.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiyUpcBYPCouUkHPWw8hCQk7Kbw61Xi7PtG1VgufHaw0teqdGO83POgaMm_Zjli_Lcbkk2c_3ye4RCWycPs13XASB8rkmKNutVHOv_kiGnBcNJyLgjwf8v4eZEru_5VZ3tl9mUVR6t9EjQW/s320/sweet+Hanz.jpg" width="210" /></a></div>
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I wanted to post this photo that a fellow Brussels owner posted on her Facebook page! She lives in northern Massachusetts! We sure don't see these colors in South Texas!</div>
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My Aunt Elsa is my moms youngest sister, and she was here for a few days visiting from Washington State! She came to Texas for her High School Reunion and was voted Most Closest to Looking Like She Did in High School and also for coming from furthest away, but I think she declined that one as she had already won one prize! Aunt Elsa was a big help in getting mom organized and packing some of her things since mom will be moving to a retirement community soon! Aunt Elsa has always made me feel special and we spent many weekends with our grandparents as we were growing up and we adored spending time with them and Aunt Elsa!</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjrCrdl4Saylp6IZiZ9VgLaBEppSA_gTpXfUXZxypsN3AROAxuqtYC_ynrrl-bjAqT1NZpeDnGop_0lz00AQo869yv9MOhZ4_he4QimxSB_mqvm-vTwursC8YXgNkUIYxXUWOuI8Dout2z-/s1600/Mom+and+Aunt+Elsa.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjrCrdl4Saylp6IZiZ9VgLaBEppSA_gTpXfUXZxypsN3AROAxuqtYC_ynrrl-bjAqT1NZpeDnGop_0lz00AQo869yv9MOhZ4_he4QimxSB_mqvm-vTwursC8YXgNkUIYxXUWOuI8Dout2z-/s320/Mom+and+Aunt+Elsa.jpg" width="320" /></a></div>
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A week or so ago, we had dinner @ the Fossums with special guest Fr. Roche, and we were happy Aunt Elsa was still here! Fr. Roche is a patient of Greg's and had come in for his appt. earlier that day, and had brought with him a holy relic to bless Greg and his practice. Greg always asks priests and nuns that come in the office to pray for me, and wanted Fr. Roche to give me a special blessing. Greg was not sure about the relic's background and called to ask Celia about it sending her a photo on her cell phone. The relic is of St. Faustina of the Divine Mercy. Celia was astonished, as she had just been praying that morning for a miracle for me! My family prays for me through the intercession of Blessed John Paul II - he is responsible for bringing St. Faustina and her mission, to show the world the Image of the Divine Mercy. He, as pope, brought it to the forefront of the world and was the one who cannonized Sr. Faustina as the first saint of the 21st century! Those two are very closely linked. Blessed JP2 established the Divine Mercy Sunday and went to heaven on the vigil of the Divine Mercy Sunday. Later, Pope Benedict XVI elevated John Paul II to Blessed, on Divine Mercy Sunday, May 1, 2011 - my 50th birthday - and he will be canonized to Sainthood on Divine Mercy Sunday by Pope Francis! The motto of the image of the Divine Mercy? "Jesus, I trust in You". Each of us must make that commitment to trust in Jesus completely, no matter how impossible it might seem. I especially need this right now with what I'm going through and will be facing as I start my reconstructive surgery in a couple of weeks!! Were it not for my incredibly supportive family, there is no way we could be doing this on our own! Here are some photos of that evening! Here we are with Fr. Ed Roche as I hold the relic and mom holds the certificate of authenticity and prayer!</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj0nGrqjjBHiR8r7TpFOFZq3ZsXZpDN8VApA4OeTQ0ajMObTcWPxqhB5qO9W3I_Q23Nj28FQStnmwQmnlA1VH_TWyROGILyYqiGJ8PZ77QXYc5kjzLZ5Rsn9gVBrD6yKIWYjLdMNewA5tMs/s1600/Fr.+Roche%252C+mom%252C+me%252C+Aunt+Elsa+and+Celia.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj0nGrqjjBHiR8r7TpFOFZq3ZsXZpDN8VApA4OeTQ0ajMObTcWPxqhB5qO9W3I_Q23Nj28FQStnmwQmnlA1VH_TWyROGILyYqiGJ8PZ77QXYc5kjzLZ5Rsn9gVBrD6yKIWYjLdMNewA5tMs/s320/Fr.+Roche%252C+mom%252C+me%252C+Aunt+Elsa+and+Celia.jpg" width="320" /></a></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhBbWza1KTSVBleeN7HJ6eTxzCeMYvT3xSEO1hhYef6pBwkGg1wgA5sPZpAYa03pM2TPqWMyOSyP1ep-Nk5JxgW08TKQdZ_cop4NvVsKAdE2cc8oxGtSYLvq-pE_1J4ZLi5Rw7ORstIVA1I/s1600/Divine+Mercy+Holy+Relic+of+St.+Faustina.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhBbWza1KTSVBleeN7HJ6eTxzCeMYvT3xSEO1hhYef6pBwkGg1wgA5sPZpAYa03pM2TPqWMyOSyP1ep-Nk5JxgW08TKQdZ_cop4NvVsKAdE2cc8oxGtSYLvq-pE_1J4ZLi5Rw7ORstIVA1I/s320/Divine+Mercy+Holy+Relic+of+St.+Faustina.jpg" width="320" /></a></div>
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The Holy Relic of of St. Faustina of the Divine Mercy</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjDXymcom2pV4Duct9m-ZsJ5J8DMA4DVbD-gWJVCcvZ1G1RiXIxazBsj6p5mfC1ExliQDpgrk8_VpGy2gG7yLnIKJXM91ZdlKjg6_gvEBrwWN8GObfp5IIbrhxje-Bo_rIa9o9u_MUYUVok/s1600/Greg+wearing+Vicente%2527s+cowboy+hat+and+Mark.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjDXymcom2pV4Duct9m-ZsJ5J8DMA4DVbD-gWJVCcvZ1G1RiXIxazBsj6p5mfC1ExliQDpgrk8_VpGy2gG7yLnIKJXM91ZdlKjg6_gvEBrwWN8GObfp5IIbrhxje-Bo_rIa9o9u_MUYUVok/s320/Greg+wearing+Vicente%2527s+cowboy+hat+and+Mark.jpg" width="214" /></a></div>
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Here is my brother-in-law Greg, wearing a cowboy had mom gave him that belonged to Vicente - with my husband Mark.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjLlUn5hosxx6UhVAi6KSdqin3tnzgJ4B4hwOPu8oDdhyphenhyphenBa0vAiih-_Koi79rOEeGSqvXn_tyUQ7nXav-1OMDe-1hBoIbcA3jnGmWefUaYxY0P_ERYjAcjP-I3TmeSzJkyOfvSwzvkAl280/s1600/Mom%252C+me%252C+Celia%252C+Aunt+Elsa+and+Penny%2521.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjLlUn5hosxx6UhVAi6KSdqin3tnzgJ4B4hwOPu8oDdhyphenhyphenBa0vAiih-_Koi79rOEeGSqvXn_tyUQ7nXav-1OMDe-1hBoIbcA3jnGmWefUaYxY0P_ERYjAcjP-I3TmeSzJkyOfvSwzvkAl280/s320/Mom%252C+me%252C+Celia%252C+Aunt+Elsa+and+Penny%2521.jpg" width="320" /></a></div>
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Here we are, mom, me, my sister Celia, my Aunt Elsa and the Fossums dog, Penny!</div>
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I have to say after seeing these photos, I am so unhappy with my appearance. The paralysis on the left side of my face is the result of all the embolizations I had done in order to get rid of the avm. While Dr. Robinson plans to help make me look as symmetrical as possible, I have no idea what the end result will be - especially because this will be done in stages over the next couple of years and there may be only so much debulking that can be done if a lot of that tissue that needs to be removed is too involved with nerves - don't want to cause any more nerve damage! I am so ready to have something done - because it's even scarier to <em>not </em>have anything done! When I've seen nurses and doctors while I've had to be hospitalized locally after a major bleed, that don't even want to go near messing with my avm - I can only be grateful that there are doctors that face the medical challenges with the best of their abilities to help patients that desperately need their help! I remember thinking this when I first met Dr. Reed that is the head of Voice and Swallow in Denver and he would see me every other visit to check my airways before having an embolization. He was always honest with me and didn't sugar coat anything - but at least we knew where we stood. Dr. Reed was very impressive in his knowledge and it didn't hurt that he also was easy on the eyes! Were it not for these doctors, people like me would be in very big trouble!</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjonmaZtAUfxR0BArz7LFH4ziNrcF8zv3k-nMjiio2QrIdDVnFkbViTdJbnzw5bmP0sBNWwuT04Z6t2Qws6Ep9KlpXiaqufQhIQSZvUKJQVxXk2NDgWx04XNWk-hfAsl0Ou3rllKRi0XIEj/s1600/pics+from+phone+174.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjonmaZtAUfxR0BArz7LFH4ziNrcF8zv3k-nMjiio2QrIdDVnFkbViTdJbnzw5bmP0sBNWwuT04Z6t2Qws6Ep9KlpXiaqufQhIQSZvUKJQVxXk2NDgWx04XNWk-hfAsl0Ou3rllKRi0XIEj/s320/pics+from+phone+174.jpg" width="320" /></a></div>
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I just realized the t-shirt I'm wearing says, Frequent Victim of Brussels Griffon Drama! So true!</div>
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In a couple of weeks, Celia and I head out to CO to finally start getting my reconstructive surgery started! She will be with me during the first five days in CO, then my husband Mark will take over the next five days I am scheduled to be there. I'll be having a consultation visit with Dr. Robinson, then the surgery in the next day or so and also a follow up visit after the surgery. Not sure <em>exactly</em> what Dr. Robinson will be doing, but I know he is probably the best doctor possible to help me @ this stage!</div>
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I must also tell you that one of the reasons I'm not afraid of having these procedures, is because <em>everyone</em> @ Swedish Medical Center is so fantastic! Of course Dr. Yakes, his P.A.'s and office staff. The Admitting staff, gift shop owners and especially the nursing staff, techs, housekeeping ...! They've always been right there making sure I'm getting the best care possible! So friendly, that I look forward to seeing them all during my treatments!</div>
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I always like including some inspirational sayings I've collected when I see them on Facebook!</div>
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I have to remind myself on a daily basis sometimes!<br />
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I can totally relate!</div>
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Alrrrighty then! I've gone on long enough ... I love to write and express myself and hopefully help other avm-ers as we struggle to heal and lead as normal a life as we can while we deal with this on a daily basis at different levels. I am very blessed to be surrounded by supportive family and friends that make it possible for me to carry on through this avm journey!</div>
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I will keep you posted! This next trip to Denver will be a major one as Dr. Robinson starts helping me fix several things that all the embolizations left me unable to function normally. However bad going through these next surgeries is, at least I will finally be on the road to recovery from this ordeal.</div>
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Much love to all! I appreciate all your prayer, love and support!</div>
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Cyndi</div>
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Dulcehttp://www.blogger.com/profile/06600161748075718477noreply@blogger.com0tag:blogger.com,1999:blog-1012218600192528012.post-54220863990862623372013-10-12T17:26:00.003-05:002013-10-16T23:23:05.427-05:00Greetings Everyone! <br />
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How have you been? Well, I hadn't blogged in a while, as I've not had much to blog about! Last you heard, I was "done" with my embolizations and ready to move on to my reconstructive surgery! That was 10 long years of traveling to Denver to see Dr. Yakes! I probably had approx. 80 some embolizations! Unfortunately several delays have prevented my continuing my journey to get rid of this avm - the main one being that Humana (my secondary insurance) doesn't feel it's medically necessary for me to have reconstructive surgery! What? What part of my teeth are cracking, my speech and hearing is impaired, my lower lip is busted, I have facial paralysis from embolizations and coils under my chin that still need to be removed during the debulking of the fluids and tissue that would give me more of a normal appearance is Humana not understanding?! Yikes! It's not like I'm requesting a cute, turned up nose - I'd just like the one I had before to look like it used to! I'm so tired of people staring @ me like I'm a freak! Mark and I went to Joanne's Fabrics the other day to look for material to get some Halloween costumes made for Hanz and Bella - I was fed up with stares I was getting, so I loudly yelled, "Quit staring @ me, I'm not that interesting"! One of my besties suggested I have a t-shirt made that says, "It's an AVM - Google it"! Or maybe, "Settle down, it's just an AVM"! Love that idea! Thanks Felice! I was just telling my brother-in-law Jim about it and he thought it was a great idea, so wants to have the t-shirt made for me! <br />
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We've had a sad turn of events in our family! We've lost my step-father Vicente Morin on September 20th. What started off as bronchitis, went into pneumonia and he was hospitalized and discovered he also had pulmonary fibrosis. Put on a respirator as the family gathered around knowing it was only a matter of time. Vicente would have been 82 at the end of this month and he and my mom would be married 15 years in November. Right around the time of his illness, I was still trying to control my bleeds coming from capillaries in my mouth/gums that I'm waiting for the plastic surgeon to laser and/or resect! Meanwhile, I <em>constantly</em> have to monitor my blood pressure to keep it from going over 130/80 and that involves taking my regular HBP meds, plus Clonodine to lower it every 6 hours. My PCP gave me a new med. to take @ bedtime that would be longer lasting so I could try and get some much needed rest and not worry about getting up to take more meds if the six hours were up. Well, the new pill didn't work and I woke up a couple of nights with a bleed or blood clots in my mouth. Gross I know, but I had to pack my mouth in gauze and missed a couple days work. Even with my mouth packed, I had more bleeding seeping out of my mouth as I just sat on the couch watching TV. That was the day of Vicente's rosary that I was not able to attend - afraid of having a bleed in the middle of a large crowd of people. I still didn't have the bleeds under control to where I could attend the funeral Mass the next day. I will go to the Veterans Cemetery where Vicente is buried once his marker is put up. He was always so good to me and I considered him my ally! May he rest in peace.<br />
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So the other day I was on Facebook and a fellow avm-er sent me a message asking how I was - said her mom was worried that I hadn't updated my blog and hoped I was ok! Nice to know someone out there is reading it! Thanks Ryann and Joanne! Celia and I met them during one of our trips to Denver!I'm updating this for you! I appreciate the support! Ryann is currently taking a break from having embolizations with Dr. Yakes and asked why I didn't do the same. I don't have that luxury, as right now the main focus is to get my bleeds stopped - not to mention it would be nice to get back to looking more normal and have my life back!</div>
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One of the great things about being done with the embolizations is I'm finally off of all the steroids and pain meds! That makes me a lot nicer person to live with! My husband Mark has been amazing to put up with me throughout the overwhelming appetite I had with the steroids, not to mention the irritability that came with the pain after procedures. </div>
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Of course my entire family is awesome in helping in any way they can! My sister Celia is helping me with the Humana battle and we've contacted a patient advocate that will hopefully help with the appeal! As of now, the earliest I can be seen by Dr. Robinson is Nov. 21st, so a week before Thanksgiving, Celia and I will travel to Denver to start the next series of surgeries in closing out this chapter of my life! Actually, we're trying to arrange for Celia to go with me on the start of this trip and half way through, Mark will take over and finish the last half of the trip with me! It's just too much for my sister to be away from her responsibilities, home and family for 10 whole days in a row! Plus, she's wanting to prepare her home for the Thanksgiving holiday! We usually gather in their home and she sets a beautiful table with gourmet goodies everyone brings! Wonder how much of that I'll get to really enjoy this year? Oh well, there's no one that can do it for me and however bad it gets, it's got to be better than where I am now!</div>
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Meanwhile, for some comedy relief - saw this cute photo on Facebook and it reminded me so much of my nephew Mark! We had a heck of a time getting our family wedding group photo after our ceremony in 1992, because each time the photographer was about ready to snap the photo, Mark our ring bearer (5 years old) made a face! We used to tease my sister that she had an affair with Jim Carrey, because her son is big on that type of comedy quick wit! Right before walking down the isle with the flower girl (one of my cousins daughters, also about 5 - a doll of Asian/Hispanic ethnicity!), my nephew told someone, "I hope they don't think it's ME getting married"! Runs in our family actually - we're not well and we know it, so it's ok! It's the people that don't know it that you have to worry about, right?</div>
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Oh! Here's a cute sign mom found in a shop in a nearby town! It's rare to find anything here with Brussels stuff on it, so I was happy mom got it for us! Course our kids are cuter if I do say so myself! <br />
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Speaking of Brussels, we have a running joke (what isn't in our house?) that we call our 3 year old Brussels, Bella - "Bel-cro" because she follows Mark <em>everywhere</em>! Can you tell what this next photo is? It's Bella peeking under the door because Mark is in the bathroom! "I know you're in there daddy", "you can run, but you can't hide"! "Let me in, I want to be with you"!</div>
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A while back, we got some steps @ the pet store for the kids to be able to get up on our bed. Unfortunately, they are only 3 steps and now that I sleep on that twin size hospital bed next to our king size bed, Hanz still has a bit of a jump to get up after the third step and has fallen a couple of times! Can't have that! So, finally got Mark to make him some steps that will get Hanz up to my bed easier and safely! For whatever reason, Bella won't go up the steps! She'd rather go around to the other side of the bed where the old steps are and use those to get up on the king size bed, then she'll hop over to mine! She does enjoy munching out on the corner of the wooden steps though! Here's Hanz taking a trial run!</div>
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As I'm sure y'all know by now, we adore our furry kids and they are <em>great</em> therapy for me to @ least temporarily forget about my medical set backs! We sing to them and just spoil them rotten! Fun! Currently working on their Halloween costumes as we take them to Petsmart for a photo op on the 19th of this month! Course a trip to see Santa will be in order in December!<br />
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My brother-in-law Jim came by earlier - he and my husband Mark have been taking some wood carving classes and I'll post a photo soon of some of their work! Jim's and Shelley were able to come to Vicente's funeral Mass so that really meant a lot to us!<br />
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I've been doing fairly well, but recently have been dealing with a bout of bronchitis. Soooo tired of hacking! Made a doctor appt. and got a shot and some meds to start getting rid of that! My PCP prescribed a different pill to take @ bedtime, hoping it would allow me to rest and not worry about getting up @ an odd hour to take a Clonodine. Nope! Didn't work! This is the second time I try to take something else - woke up @ 5 am having a minor bleed from my mouth. UGH! To boot, while the Clonodine does work, it dries my mouth so much, so I drink more water, so I need to get up in the middle of the night to use the bathroom - vicious cycle! Again, what part of this miserable life is Humana not understanding I need to get fixed? I do have some mouth spray made by Biotene that helps, but ugh!<br />
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So our battle of appealing the claim to Humana continues and I absolutely must try and work with my therabite to try and get my mouth open wider so the plastic surgeon and oral surgeon will be able to get some work done in my mouth in November! Sent a letter to the 7 North nurses station that takes such awesome care of me @ Swedish that I hope to see them soon! I've never been so well taken care of - they excel @ patient care and have always made me feel special! Kuddos to them! Ok, gotta go - guess who's pawing @ me to get off the computer? Hanz!<br />
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Thanks everyone for all your prayer, love and support! I know I am truly blessed and love my life (except for the avm)!<br />
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We have the two cutest furry kids in the world, I enjoy my family, friends and my work - I just want to feel well enough to function properly and enjoy a movie, eat what I want and have a drink once in a while! I miss that! With all the meds I'm taking and the bleeds, I can't risk not having all my wits about me (yes, insert joke here)! I miss the times Mark and I would play card games and drink White Russians! Mark would always say, "Hey, what about a White German"? Not well.<br />
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Went to the library earlier to return some books and pick up a few more. <br />
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Here's my current read - we grew up watching and enjoying The Flip Wilson Show! Have given my Nook a break, and lately the free Friday books offered on the Barnes & Noble Nook blog aren't that great, but I look forward to some good books coming out soon! I almost sure one of my favorite authors P.C. Cast has a book coming out soon, as does another author Celia and I enjoy - Diana Gabaldon that has the Highlander time travel series of books! My stamp table has too much junk on it that I haven't felt up to cleaning the clutter to stamp out a card.... I'd love to do one of my work in progress counted cross stitch, but don't want to risk having a bleed on the fabric. :( Soon I hope to resume that hobby! Ok, enough of all that! Anyone seen the movie GRAVITY yet? I'd love to see it, but just not up for it - would probably fall asleep if I sit still too long.Take care everyone! Much love and hugs to all!<br />
I may tweak this entry again and I hope to keep updating it with some good news soon!<br />
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Cyndi<br />
P.S. Saw this on Facebook and wanted to share!<br />
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Heading off to bed where I'll usually pop in a dvd of my favorite show or one of my favorite Twilight Saga movies!</div>
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Dulcehttp://www.blogger.com/profile/06600161748075718477noreply@blogger.com0tag:blogger.com,1999:blog-1012218600192528012.post-47555237974966109142013-07-13T14:14:00.001-05:002013-07-13T14:14:16.197-05:00Yikes!Well, heck! We are currently without firewalls on our computer - hope to get them back up by Friday - so if you see any ads on my blog - esp. with Obama on it - it was <strong><em>not</em></strong> my doing! Eeeeeek! I can't seem to even get into the previous blog entry to edit it, so we'll see what happens! Dulcehttp://www.blogger.com/profile/06600161748075718477noreply@blogger.com0tag:blogger.com,1999:blog-1012218600192528012.post-39914461467123977452013-07-13T08:35:00.002-05:002013-07-13T08:35:31.491-05:00Fear of sneezing.Hi again! How is everyone? Hope you are well and doing all the things you enjoy! I'm going to try and blog a bit while the rest of the household is asleep! Especially Hanz - he really doesn't like me sitting @ the computer when I could be paying attention to him!<br />
As you know, I've been having bleeding issues lately - apparently even though I'm "done" seeing Dr. Yakes, I still have tiny capillaries that need to be cauterized or resect by the doctor who will be doing the next stage of my surgeries! We have been trying for several months to get all my paperwork in order so I can get scheduled to begin this next round of surgeries, but it's been one thing after the other that hasn't gotten us there yet. Unfortunately for me, that means I'm still having bleeding issues! The worst is not knowing when these bleeds will happen - I just had that one July 3 and it was bad enough that I immediately went in to get a blood count to see if I needed a transfusion. I should have gone ahead and gotten it, even though I was @ a decent level. <br />
Wed., July 10th I had gone in to work, and couldn't decide what to do for lunch. I went to the Wal-Mart near work and was looking around, when I felt a sneeze coming on. I dread sneezing, because many times that triggers a bleed. (Although there are times bleeding can start when I'm sitting still) Sure enough, after sneezing I touched my chin and had blood on my hand. I wasn't too far from the ladies room toward the back of the store, so I made my way there as soon as I could. I barely got in and could already feel blood coagulating in my mouth. Made me want to gag and I leaned over the sink to spit it out! A lady was in one of the stalls and when she came out she washed her hands and hadn't really glanced over to what was going on w/me in the sink next to her. When she did, she asked if I needed help. I told her I had already called my husband, but she said she really wanted to call 911. She walked out and I guess got a Wal-Mart employee - she was a manager and agreed that they would call 911. Mark had just sat down to have lunch w/his brother Jim @ a barbeque place when I called - but he got to me very quickly! The first lady kept handing me paper towels as I leaned over the sink bleeding all over the place. I kept trying to rinse my mouth by cupping water in my hand. Meanwhile gobs of coagulated blood were clogging the sink, and I would try and grab a handful of paper towels to throw it out, but that would make me gag! The one lady asked if I needed a chair and I said yes. I thanked her for helping and wondered how all the blood wasn't freaking her out! Between the first lady and the manager, they were trying to help with blood everywhere! Mark arrived and asked if I had any gauze - I usually pack my mouth with it to try and stop the bleeding. Told him there was some in the car, so he ran out to get it and finally seemed to get it under control. It seemed to be coming from way in the back of my lower left molars. It kept coagulating, but I would pull that because it was gagging me and the bleeding would continue! Somewhere along that time, the EMT's arrived and started trying to help. I had sat down on the chair by this time, but still leaned over the sink bleeding. I was feeling light headed and apparently passed out! Mark heard one of the ladies say she thought I wasn't breathing - so he removed my trache cap! I think @ this point the EMT's had cut my kerchief off, as it was in the way and all bloody. I wear it over my trache to keep dirt out, so a lot of people aren't aware I even have it. That's unfortunate, because of what happened with all the bleeding! Thank God Mark thought to pull my trache cap - he saved my life! I started breathing again and the EMT's started an IV by putting a needle on the back of my right hand. Too bad my mediport wasn't accessed, they could have used that. I do not like going to the hospital, especially here locally, but had no other choice with the way I was feeling. Got put in the ambulance and headed to the hospital, with Mark following in his car. He notified my family and they all met us in the hospital emergency room. <br />
Right away I was put in one of the rooms in Emergency, and one of the nurses helped take off my clothes that were soaked in blood. She cleaned my hands that of course were also all bloody. My mouth is packed in gauze and I'm thirsty and can't have anything to drink. Or at least I don't want to because I don't know what's going on in my mouth until I would be able to pull the gauze out and rinse. Course no one wants me to do that yet. My primary care physician Dr. Boynton is notified and arrives soon. My family asks him when I can remove the gauze and he said to wait @ least 4 hours. It's freezing in the ER, my sister Celia is calling up to CO to ask what the hold up has been to get me in for my next appt. We need this bleeding stopped completely! My brother-in-law Jim peeked in @ one time - I waved a greeting. There was only 2 people allowed to be w/me, so family was taking turns. At one point, Celia looked out of the ER room and there was no one around. Seems there was a major emergency, and all staff was trying to help! I can understand that and waited patiently. I probably got to the ER about 1pm and wasn't taken to a room until 7pm or so. I was admitted to ICU because my doctor said that way I would have better care in case I had any bleeding issues. We sent mom home and Celia stayed with me while Mark went home to get a few of my things and checked on the kids (Hanz and Bella).<br />
I kept wanting to remove the gauze from my mouth and rinse so I could have something to drink. All I had all day was a couple of pop-tarts and some coffee while @ work! Mark had to go to my work and get my purse (I had put my license and debit card in my pants pocket) and my "what if" bag that had medical supplies!<br />
The nurse on duty wanted to call my doctor to be present when I removed the gauze. I told him that wasn't necessary - but did wait until Mark came back. He knows best how to help me with everything I need! By the time I was able to remove the gauze in my mouth it was almost 8pm! I knew from a previous visit that there is a thing that is like a stick w/a sponge @ the end that I could clean my mouth up with, so I asked for that. Of course I was given a liquid diet. The only thing I wanted was the teeny cup of apple juice. I know, if I'm complaining I couldn't be feeling that bad - but when you are feeling that bad, it really sucks when you can't even feel better by getting anything decent! Mark insisted I try the chicken broth - gross! Got a popsicle that I told him to eat because I can't open my mouth wide enough to eat that - and orange jello. Ugh.<br />
I kept asking for someone to access my mediport and no one wanted to go there. Meanwhile I am hooked up to all these wires w/a heart monitor and a blood pressure cuff on the left arm. The nurse puts those darned hose on my legs that are hooked up to more wires for circulation. They tell me, "try to get some rest". Connected to all those wires and guess what? I have to go to the bathroom. Celia had asked me when she was there earlier where the bathroom for the room was. I pointed to the toilet chair. Are we having fun yet? <br />
Someone from the lab came by to draw blood - ironic, huh? Mark was still with me and again asked the nurse to access my mediport. Finally they found someone to do this and I know I'm complaining, but OUCH! This nurse did not know what she was doing - the last time my mediport was accessed in CO - I think it was nurse Jason and I barely felt it at all! Soon after this I had asked Mark to go home to be with the kids. Don't like them being home alone so long. I have to show you my baby Hanz sitting in my spot on the couch, keeping it warm for mommy! That's one of the hard things about going to CO or having a hospital stay here - being away from my babies!<br />
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Then later, he kept my bed warm - so precious!<br />
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Of course Bella was nearby on the king size bed! "Where's mommy"?</div>
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In case you don't know by now, my kiddos are pretty special to us! So Mark's gone and I decide to watch tv. I don't even have the strength or will to even read my Nook. I am freezing and asked for an extra blanket several times and never got it. <br />
I was given 4 units of blood through the night and first thing in the morning, Dr. Boynton came in to see me. I asked if I could go home and he said no problem, he would write up my orders for release! Yay! Got home about 10 a.m. - Hanz and Bella were so happy to see me! Got settled in and communicated a little bit on Facebook to let friends and family know the latest. I didn't want to spend any time on the computer that I could be enjoying Hanz and Bella! Mark as always is amazing! Right away, he fixed me a bowl of grits - nice to have something warm in my stomach! For lunch I asked him for a baked potato, with shredded cheese and sour cream! Normally, I would have tried to go in to work the following day, but I really was feeling weak and needed to regain my strength! Mark had spoken to my supervisor right after the bleeding incident and had no problems there. My supervisor Kathleen is awesome! I texted her later to tell her I would probably wait until Monday to come in and she answered to take more time if needed. I'm glad this bleeding didn't happen @ work! Mark said he hugged the two ladies that helped me after the EMT's took me on the gurney. We'll go back after a while so I can thank them personally. I have been blessed to be surrounded by angels all the time! Can you imagine if I had been in that bathroom alone and had passed out? Well, enough for now - I'm signing off to go check on my kiddos! I'm sure as always I'll tweak this here and there and add info or photos, but just wanted to post this so everyone could know the latest. For now, I have a tentative appt. to see Dr. Robinson (plastic surgeon) in CO on Sept. 11th, but we're trying to get something sooner!<br />
Thanks for all your love, prayer and support!<br />
Cyndi<br />
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Dulcehttp://www.blogger.com/profile/06600161748075718477noreply@blogger.com0tag:blogger.com,1999:blog-1012218600192528012.post-13699644509814899482013-07-03T22:45:00.002-05:002013-07-04T17:51:55.812-05:00.... and the nightmare continues.Hey! Happy 4th of July everyone! Hope y'all have a safe, fun one! We'll probably just hang out here @ home, even though we've had a couple offers to join friends and family. Unfortunately, I had a major bleed this morning as I was starting to try and brush my teeth @ 6:30 a.m. I had just leaned over the sink to rinse my mouth and I saw blood. It started coming fast and I called out to Mark to come help. He was still asleep, but heard me and came right away. I couldn't tell exactly where bleeding was coming from and no matter how much I tried packing my mouth w/gauze, it just seemed to soak through right away and kept bleeding! I could tell it was spurting out and I finally got a hand mirror and it seemed to be coming out from under my tongue! After about 5 minutes or so of it finally stopping, I decided since it seemed under control, that I needed to shower in case (heaven forbid) I ended up needing to go to the hospital. I don't like the showers in the hospital I go to a few blocks from our home - I need a hand held shower head to maneuver water away from avm area. Due to partial paralysis on my left side, it's hard for me to shut my left eye, so don't want to get soap in it! Anyway, called my primary care physician to get some lab work done and get a blood/hemoglobin count. Didn't get results until about 1pm - still anemic, but unless actively bleeding, then didn't require a transfusion. As I figured, my doctors office would be closed Friday, so I asked if they could fax the orders for a transfusion where I have them done @ the Spohn Cancer Center. That way in case I had any more bleeding, @ least the orders would be in and I could go in for a cross match and then schedule a transfusion. My husband Mark had already put in for some time off that was to start this afternoon, but w/my bleed, neither of us made it to work in the morning. I went w/him for a follow up doctor appt. he had - as I didn't want to be home alone in case of another bleed. UGH! Ok, I've been feeling so lost and in limbo lately - since I haven't been able to schedule an appt. w/the dentist/plastic surgeon that will continue my next phase of treatments for reconstruction! I had written to Kelly, Dr. Yakes P.A. to ask why I was still having bleeds. I'm writing her answer so that everyone can also understand why this is happening. Let me just say how fantastic Dr. Yakes and his team are! From the P.A.'s to the patient coordinators, office manager (Hi Mona!) and everyone @ Swedish goes above and beyond to help the patient feel well taken care of!<br />
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<span style="color: blue;">Kelly wrote: "Hang in there girl, we will get you through this!! You can do it. Dr. Yakes said the bleeding may be from the swelling pushing back from the treatment, so give it a little more time. There are also very tiny little capillaries next to the cheeks and gums, in your case, very close. These are too small for Dr. Yakes to treat, but different in you as opposed to another person with no AVM. Hopefully Dr. Robinson can get in there and resect what is left and close those areas up to prevent that in the future. I know you are constantly in fear, and I still want to remind you that you will not die from this bleeding, you know what to do and you have good doctors there to see you at those times in need! Wet gauze, breathe, relax and then see your doctors.</span><br />
<span style="color: blue;">As far as us you can see us in 6 months for MRI and arteriogram. If you are in recovery from a surgery or it's not convenient, then you can wait longer on this. Keep us updated to how you are doing".</span><br />
<span style="color: blue;">Kelly</span><br />
<span style="color: blue;"></span><br />
<span style="color: black;">One of the things that has really helped, is recently joining an AVM Support Group on Face Book! Wow - just knowing that you aren't alone and that someone else completely gets what you're going through is a tremendous help!</span><br />
Every time I have a major bleed, it freaks me out and I don't want to be alone or stray too far from home. Glad it didn't happen @ work! As it is, I really limit my outings to work, to Barnes and Noble to get free WiFi and my free Friday book and to Petsmart to take the kiddos on an outing! That's it! Oh, and to the grocery store a few blocks from home - usually w/Mark. I just can't see myself trying to take in a movie. What if I start bleeding and I'm sitting there in the dark! Can't eat popcorn - limited to what I can eat w/the avm stuff going on in my mouth. If I sit still too long I'll fall asleep from never getting enough sleep @ night and pain killers that make me drowsy! The only movies I've ventured out to see in the last few years are all the Twilight movies, as I'm a Twi-hard! (One of my besties @ work got me this cross stitch pattern! She was putting in an order from Mystic Stitch and they had a sale, buy 3 get 3 free!) Don't know when/if I'll do this, but it will be time consuming that's for sure! Yes I know Kristen and Rob aren't together anymore, but they'll always be Edward and Bella!<br />
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During the Breaking Dawn 2 movie - it hadn't started and I was already falling asleep! I had to take a steroid to stay awake! I just feel safer and more comfortable @ home. Besides, I really don't like how people gawk at me when I'm out in public. I didn't think I was THAT hideous! Where are the parents of these kids that see me and just stop in their tracks and stare at me? I know they are innocent, but it makes me feel like crap.<br />
I really don't want to get back on anti-depressants, but I don't like who I am w/out them. Unfortunately, being on them causes me to have very strange dreams and have restless sleep! Mark would tell me I was kicking and squirming all night! I really try and psych myself into having a better outlook, but it's hard when my left ear is draining, I'm drooling, hacking or bleeding. I can feel the coils that are still in until I get debulked under my chin. Can't wear make up to look any better and I just feel like my life has been on hold now for 10 years!<br />
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Come on! I have to put something "Big Bang Theory related" in my blog!<br />
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I miss Mark-a-ritas - can't drink, I need to have my wits about me in case of a bleed! I do have things to be grateful for. I have a trache, but don't need it to breathe, just to be intubated. (I'm limited on how wide I can open my mouth right now, due to avm). I know some people need their trache to breathe and need to be suctioned daily - so @ least I'm not having to go through that on top of everything else!<br />
I'll be tweaking this blog entry, as I always seem to do w/all my other entries! I need to put in some photos and I wanted to tell y'all about all my besties that make my life a little easier by being so fantastic and supportive!<br />
I'd better call it a night. <em>Dread</em> going back into the bedroom - fear of having a bleed during the night. Mark usually falls asleep on the couch and comes to bed about 4 or 5 a.m. I can't fall asleep on the couch since I need to be hooked up to my humidifier on my trache and sleep almost sitting up in my hospital bed. If I do doze off on the couch, I end up having a hard time "waking up" and feel like I can't catch my breath! Thanks for putting up w/me! If you're healthy, don't ever take it for granted! I'll check back soon! Hanz already came by earlier to tell me to get off the computer!<br />
Cyndi<br />
I just had to put this in here - cute, huh?<br />
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Hurry up and fix my lip Dr. Robinson! I want to kiss my furry kids! (This isn't one of them, but still, you get the gist)!<br />
Ok... here's my kids! Bella is two! She snores like me and she is daddy's girl! If I baby talk one of them, the other one has to run up to me as if to say, "me to mommy, me too"!<br />
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Hanz is four! He's mamma's boy. Usually hangs w/me on the couch and in bed! He's our "special boy"! They are such great therapy for me! We just adore them and can't imagine our lives w/out them!<br />
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<span style="color: #38761d;">The trials to which the Lord subjects you and will subject you are all signs of divine love and are jewels for the soul. Winter will pass and the never-ending spring will come, all the more rich in beauty as violent were the storms. St. Padre Pio</span></div>
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<span style="color: #0b5394;">Ok, so I'm having a hard time ending the tweaking of my latest entry! I was telling my husband Mark earlier, that the other night as I got into bed, I couldn't decide whether to read or watch TV. I ended up getting my phone and checking out You-Tube. There was an artist that I love(d) - he is no longer with us - Dan Fogelberg. Passed away @ the end of 2007. If you aren't familiar w/him or his music, please take time to research him, I don't think you'd be disappointed. I was lucky enough to see him in a live dinner theater atmosphere while I lived in Miami while I went to college for a few years. Such a shame he's gone, but his music will live forever! Kinda reminds me of how Taylor Swift writes - you can just envision what happened by listening to the lyrics. Definitely telling a story.</span></div>
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<br />Dulcehttp://www.blogger.com/profile/06600161748075718477noreply@blogger.com1tag:blogger.com,1999:blog-1012218600192528012.post-82519130863857808622013-06-22T20:47:00.001-05:002013-07-04T12:24:04.859-05:00Spouse/CaregiverHi Everyone! <br />
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Well, It's been a little over a week that I've been back from Denver and doing well. Doesn't mean I'm happy, but @ least I'm not bleeding! For those of you maybe not too familiar w/my situation (Hi Lindsey!), for a while I would have severe bleeds from inside my mouth. This is spontaneous and has happened so severely @ work that I've had to be transported by ambulance to the hospital. I'm really trying to make a conscious effort to feel better about my whole situation.<br />
Even though I got the "all done until a check up in 6 months" from Dr. Yakes, I can't even enjoy that since I've had a few bleeds since leaving Denver. So am I REALLY done, is the bleeding just a "hic-cup"? Let me just say that I <em>love</em> my life. Everything about my life is awesome, except for the avm. I am very blessed to have a family that loves and support me,<br />
(here are my nephews Mark and Davis)<br />
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a fantastic husband who is my soulmate and an amazing cook, the 2 cutest furry kids in the world and terrific friends and co-workers! <br />
Here is one of my favorite photos of Mark and Hanz!<br />
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This next one was taken the day we got Bella! Probably the only time she was smaller than Hanz! They are Brussels Griffons, like Verdell in the movie As Good As It Gets with Jack Nicholson and Helen Hunt!<br />
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I love comedy (Big Bang Theory),<br />
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music (Taylor Swift - LOVE her! Since I can't hear well right now, I enjoy blasting her cd's in the car - all her songs are so cool! Did you know her song Back to December from her Speak Now cd is supposed to be about what happened between her and Taylor Lautner from Twilight? I loved seeing the two of them together in the movie Valentines Day!<br />
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The Band Perry - Neal, Kim and Reid) <br />
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and I enjoy several hobbies: cross stitching, rubberstamping, calligraphy, reading, blogging). I've always loved to write, so this gives me an opportunity to do that and to vent and share!<br />
Did you know that I have an Aunt that is about to celebrate her Jubilee in a few weeks with the Sisters of St. Mary in Oregon? We grew up close to Sister Juanita, she is one of my moms younger sisters - she was my inspiration for learning calligraphy! Sister J. did all our wedding rehearsal dinner menu's in calligraphy @ Edelweiss!! Here she is and I'm including a photo of her bestie Sister Adele! I really am blessed to have such an awesome family!<br />
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As some of you fellow avm-ers know, having embolizations results in swelling and steroids are needed to reduce swelling. I used to love steroids - it meant energy and feeling better! Unfortunately being on steroids for any length of time also means a huge increase in appetite, can't wind down enough to get a good nights rest, skin drying to cracking/splitting and losing bone density. My potassium is always low lately, so I take extra potassium - if I take the liquid form, it tastes like eating a cube of salt (even w/the mango flavoring from the pharmacy) and the pill form is huge and chalky! Ugh! I also take extra iron since I have/had frequent bleeds and calcium to help my bones and hair! Everything on the left side of my face is messed up due to the avm. <br />
I recently came across this photo - this was when Dr. Yakes aggressively went after a huge artery I had - ugh! This took several years to heal! Mark would do my wound care between sessions when I would go in to have it cleaned - and had to have it covered to keep germs out. It was hot and uncomfortable.<br />
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My family always tells me how "brave" I am - what does that really mean? I feel like I don't have a choice but to go out into the world and live my life. What's the alternative - cowering in the corner and shutting down? I'm sooo tired of people staring @ me when I'm @ the grocery store, or I go out to grab a bite to eat. Wish they could be a little more subtle about it. People need to explain to their children that we all don't always look well due to complications. Please educate kids!<br />
Avm's don't go away either - having one means seeing it through until a doctor can get rid of it. If you can find a doctor that is willing to take you on as a patient - believe me, there's been a couple of doctors not wanting to touch this and can't blame them either! I feel it is a curse. It isn't something that can be dealt with easily - it's an ongoing process that can take <em>years</em> of treatments.<br />
This has been extremely difficult on my marriage - how could it not be? Mark and I will be married 22 years in December. Here are some old photos I ran across. I wish I could wear makeup - someone asked recently if I could wear foundation. No - my skin is soooo sensitive right now - even if I could apply it, removing it might cause irritation or bleeding. I have lots of little blood vessels all over right now that hopefully will be taken care of later. The only thing I might be able to do is wear some eyebrow pencil and some eye shadow and mascara. For a long time I was very weak from losing so much blood, that I didn't feel well enough to even think about trying to improve my appearance.<br />
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Marriage is difficult enough on it's own, without throwing something like an avm into the mix! If I'm going through hell, my husband Mark is right there with me. He's had to clean up the bloody mess I make when I have a bleed, as I'm certainly not feeling well enough, or can't bend over to get it done myself! He's handing me gauze to pack my mouth with as I lean over the sink trying not to get blood everywhere! <br />
I've been hacking lately due to allergies, so I asked Mark to replace my trache. I'm so lucky he does these things for me - I know men that won't even carry their wives purse to help them, much less clean and change out their trache! My friend and neighbor Terry is a respiratory tech, so she has always been available to us for any help we need in that area! Back to Mark being my caregiver ....<br />
Of course there's times we lose our patience and lash out - no one could blame Mark. It isn't just a matter of my saying, "Oh, I don't feel well, but I'm going to be as nice as I can anyway." When you're gushing blood clots or in pain (or both), all you can think of is stopping it in any way possible. I don't like to wander too far away from home, as of course that is where I can be most comfortable. I'm doing good to get to work and back. I pull a hobby cart full of anything that will make my life easier every day to work! I have meds, snacks, books, magazines, cd's - anything that will help get me through the day!<br />
Yesterday after work, I had asked Mark if we could take our kids to Petco and Petsmart, as they hadn't really had much of an outing lately. It was really too soon for me to go on an outing after my last treatment. It's been so hot out, that we don't like going out in the yard to walk Hanz and Bella on the leash - and this way, we all get out of the house for a little fun and stay cool too! I don't know why I even bother w/Petco (diversity), as their employees are never friendly or helpful. I've even spoken to the manager when I'm seeking a particular item, and he's just as bad. Anyway, by the time we left Petco and then went to Petsmart - (where we were cheerfully greeted by employees), I was already planning what I could eat the minute I got home! Yesterday was my last day on steroids and I knew I had to have food right away when I got home! Soon as we walked in the door, Mark started making me a baked potato (loaded) while I had a peanut butter jelly sandwich and then I had a big bowl of Basmani rice! I have to eat soft foods due to losing some crowns and some of my teeth are damaged from the bleeds and have cracked! I am limited to how wide I can open my mouth w/all the avm things going on, so it's been difficult to eat, brush and function normally. <br />
Thought you might find this interesting. The following is a description of "phase one" of the proposed treatment plan that Dr. Robinson (Cosmetic Surgeon) wants to start my reconstruction with: Keep in mind I hope to be able to hear again on the left side and need an earlobe reconstructed, amongst other things.<br />
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Surgical removal of erupted tooth (Tooth #1,#2,#3,#18,#19,#20,#21,#22)<br />
Surgical removal of erupted tooth (Tooth #12,#13,#14) possible.<br />
Blepharoplasty, lower eyelid<br />
Adjacent tissue transfer or rearrangement, forehead, cheeks, chin, mouth, neck;defect 10.130 sq cm<br />
Repair lip, full thickness; over one-half vertical height or complex.<br />
Established patient-history, examination, counseling and ordering lab or diagnostic procedures.<br />
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Since the left side of my face has been so damaged with embolizations, Dr. Robinson said he may be able to use some of the skin under my chin in that area.<br />
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In speaking to my brother-in-law Greg, DDS., he's told me how some patients have all their teeth removed @ once! I can't even begin to imagine. It's bad enough I have to have any removed, not to mention what is going through my head is - will the blood start gushing upon removal? It shouldn't, as I'm supposed to "be done" with the avm, but this thing has a mind of it's own. How can I not be concerned or anxious? I'll be living on mashed potatoes and liquids for a while until my gums heal and I can have "temporary teeth" until possible titanium implants later? Right now I drool due to my split lip - can't wait to get that fixed. Hard to use a spoon and must use a straw to drink from a glass. I can drink bottled water from small opening. All these things are going through my mind and I'm having to deal with figuring out what I can eat, am I drooling, bleeding, hacking, etc. - so my primary concern isn't always being the best patient possible. Poor Mark works all day (out in the hot sun a lot) then comes home to help take care of me and cook and keep our home running! He feeds, bathes and cleans up after our furry kids Hanz and Bella. They are essential to my recovery - they make me so happy and help me forget what I'm going through, at least for a bit. They are both have a good disposition (esp. Hanz) and we adore them! Bella is a live wire and we can't help but laugh @ her antics! My job is to snuggle and love them! Here are my kids, making sure mommy knows they love her!<br />
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My sister and her husband Greg have been instrumental in helping us get through this terrible ordeal. They help monetarily of course, but they supply us with lots of love, prayer and time! For the most part, I'm a happy person, but going through all of this crushes my spirit @ times, and I sometimes wonder how I'll ever get through it. I do realize there are avm patients that may not be as lucky as I am or are going through this on their own - but believe me, this is the toughest thing I've ever been through. I'm grateful that I don't have children to worry about - can you imagine having to go through this and have to be trying to find someone to take care of my kids when I'm in CO! We have awesome neighbors that take care of Hanz and Bella when Mark accompanies me to CO - breaks my heart to leave my babies!<br />
In my mind, how I feel and how I look are two different things. When I feel well enough and I'm enjoying music - I'm not thinking about how I have facial paralysis - how I can't sing along (hard to understand what I'm saying with my split lip and bulk from avm that hopefully will be debulked soon) - not to mention I have hearing loss on my left side. All I can hear on the left side is my pulse.<br />
I am grateful not to have had any bleeds for almost 5 days. Mark has a pulled pork going in the crockpot that smells wonderful! I believe there is some acorn squash and fries to go with it!!! I'm doing some laundry and need to go check on the furry kids to make sure they're not into any trouble! I went to Mom's earlier and Mark texted me that he found Hanz and Bella with some bread on their bed. One of my step-sisters had a dog that ate a loaf of bread and died, so of course I was horrified to know Mark had found bread on the floor the kids had gotten into! Luckily, I don't think they ate any of it before he found them! Whew! <br />
I may tweak this here and there, but I've been wanting to write some more about how I'm feeling and what I'm going through right now.<br />
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Take care!<br />
CyndiDulcehttp://www.blogger.com/profile/06600161748075718477noreply@blogger.com0tag:blogger.com,1999:blog-1012218600192528012.post-74820770195911391982013-06-16T19:59:00.002-05:002013-06-17T22:58:54.912-05:00Denver - June 2013Hi everyone! How is everybody? Well, this blog is long overdue, but I figured I would wait until I got back from my latest trip. Hanz doesn't like my being on the computer and I feel guilty if I neglect him too long!<br />
I was doing well for a while, but had an occasional minor bleed. Kept trying to get an appt. w/the plastic surgeon Dr. Robinson to have one more consultation before he starts working on me. Plastics was waiting for an "all clear" from Dr. Yakes before starting anything else!<br />
Had a great Birthday in May! One of the longest friendships I have is w/Sylvia Wilson, she sent me beautiful flowers to work and we had dinner @ her house. Mark had made one of my favorites - lasagna! I've known Sylvia and another of my besties in Dallas for almost 40 years! We met when we were one! No, we met about 13 years of age in middle school when my family lived in Kingsville, and we've kept in touch through the years! In fact, it was Patty we stayed w/in Dallas when we drove up to get Bella!<br />
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My co-workers (clerical team) and my new Supervisor Kathleen surprised me w/a cake on my birthday! I was called to Administration thinking we had a meeting and was surprised to have a celebration! L-R Christina, Gina with her arms around me, Lucinda behind her. Olga in the green (love her - we were in choir together many years), Vanessa behind her and Manuel next to Vanessa! My co-workers are awesome - very supportive of my situation!</div>
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Celia went w/me on this trip. We had heard how there were fires going on in CO - one near Colorado Springs and another in the Royal Gorge. We could smell the smoke in the air when we arrived!<br />
Immediately got our car rental and headed to Swedish Medical Center to get registered! Dr. Yakes P.A., Kelly is the one that took are of all my admissions and patient coordinator Becky was also there. After going over paperwork and a few concerns, Celia and I went across the street to have dinner while Kelly took our luggage up to my room! Celia frequents this restaurant when I'm @ Swedish, so it's like when Norm walks into Cheers - everyone recognizes her! <br />
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After dinner, got settled into my room. First thing I did was put the throw on the bed that Celia had given me for my birthday of the Big Bang Theory gang! Got my mediport accessed and my designer Zac Posen gown - yeah right! I read a while after Celia left to go to the hotel. Raided the fridge for some juice - some nurses came by to say hello since they had seen my name on the schedule. It's such a great feeling knowing so many people care and are doing their best to make you feel better! I got a chance to see Mandi, another of Dr. Yakes P.A.'s during the day Saturday. Also one of the Internal Medicine doctors came by that was on duty. I've met him on several occasions and asked him for Dr. Pinsinski (also Internal Med. doc). Apparently Dr. P. was out of town, but Dr. Acuna told me Dr. P. tells him I'm a favorite patient. Everyone @ Swedish is so awesome! Barely got a chance to talk to Victoria in Housekeeping - she was surprised to see me! Guess when we told her I was "done" she thought I wouldn't be back. Fortunately, Dr. Robinson (plastics) works out of Swedish, so I'll be around another few years there!<br />
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Had an MRI scheduled in the morning - can't tell you how much I <em>dread</em> getting into that tube!!! Claustrophobic!!! I know that there are open MRI's but apparently the closed one takes the best images. I had been prescribed a higher dose of Xanex to get through that procedure. Still experienced enough anxiety that I was <em>so relieved</em> when it was finally over!!! Got transported back to my room and had to wait until almost 3pm for the angiogram to be done! So, that was all day w/no food for me! It wasn't so much hunger as it was thirst that was bothering me! <br />
Celia and I went to the hospital gift shop! Again, we frequent it enough that the lady who runs it recognized us! I had been wanting a chain for my glasses that I found there - it's a light pink crystal bead that it's made from. Also wanted to add to the lanyard I wear for work - saw a cute "pulley part" that has a red heart shaped smiley face w/a bandaide over one side of it's head! Celia also liked these really cute "purses" that she got one for each of us! A long shoulder strap, but you had just enough room to carry your phone, license and credit card! I'll have to take a photo to show you - pretty!! <br />
Back up to my hospital room to get ready for the angiogram. Was happy to see Dr. Jen Qin as my anesthesiologist and of course Dr. Yakes always comes over to say hello! Dr. Yakes called Celia when I was done - he used 8 cc's of alcohol under my chin. I had to wait until 8:30 p.m. to be able to get out of bed, due to the groin stick for the angio. Oops! Gotta go - Hanz caught me on the computer and wants my attention! To be continued!<br />
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Hi again! One of my favorite techs was on duty the following day - Alex a/k/a "Taylor Lautner" from Twilight. He always signs "Taylor" on the eraser board in my room and pops in to make sure I'm ok! My friend Dorinda had given me these cute puppy slippers that have the non-skid on bottoms - everyone got a kick out of them! <br />
Would you believe I didn't sleep that night? Finally closed my eyes @ 6:00 a.m. - might have slept a couple hours before getting up. Had to wait for my daily meds when the new shift got settled in after 7:30a.m. so I could then get my medi-port deaccessed and it would be easier to take a shower. Ordered breakfast and finished that, got deaccessed and showered. Celia was with me by then and we finished packing up and headed to a favorite diner called Sam's to have lunch. Headed to return car rental and then on to the airport. By the time we landed in Houston Hobby I had a slight bleed while waiting to board the flight to Corpus Christi. Got in about 11pm - I was so glad to be home!<br />
Celia is a great traveling companion! So generous and caring - makes these trips manageable for me. We are all constantly in touch w/one another during these trips especially.<br />
Saturday I had a couple minor bleeds in the morning and then another that was harder to control that afternoon. Don't understand why - maybe tissue breaking down? I'll be writing to Kelly in CO to ask. How can I feel I'm making progress unless the bleeding stops? I've felt just blah all day today. Just did some light housekeeping - can't pick up anything heavy for @ least 4 days after having that angiogram. Mark has been fantastic - preparing all my favorite things to eat. Since Dr. Yakes did an embolization, I've got to take steroids for the swelling and that always increases my appetite tremendously.<br />
I'm sure I'll be posting more photos or tweaking this a bit. Some of the photos I took w/my phone haven't make it to the computer yet, so I'll take care of that soon.<br />
According to Kelly, Dr. Yakes has given the all clear for me to start the next phase of surgeries w/Dr. Robinson. Right now we're waiting a few weeks for all the paperwork on what Dr. Yakes did to get to Dr. Robinson, plus getting insurance checked and all - so no telling right now when I'll be going to CO again. Just hoping I won't have anymore bleeds!!!<br />
Recently went down memory lane w/2 of my friends - Dorinda is vacationing in Iowa where her folks still live and she came across this poster! We used to love to go see Steve O'Neill playing @ Chelsea's Street Pub! You can actually see his performance of the song "Web of Deception" on U-tube! Fun times! His drummer was funny too!<br />
The worst part of going to CO for me is missing my furry kids! See photo of kids piled up on Mark! Can't really tell where one ends and the other begins - weird!<br />
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Recently learned of another of Dr. Yakes patients from the Facebook support group - hope to catch up to you soon Lindsey! I mentioned to Kelly and nurses that I had been in contact w/you on FBook and they knew who you are!<br />
I plan on going to work in the morning - just going to carry on and I'll write to Kelly and asked her what's going on w/my bleeds. Ugh! I probably shouldn't have blogged until I know more, but I know a lot of you want to know how my trip went! Couldn't do this w/out all your love, prayer and support! I am very blessed to have so many people that care. I'm often told how well I handle my situation - but I really don't. If it weren't for me surrounding myself w/all your positive energy, I don't know where I'd be! I mainly have pretty good days - but having bleeds just really sets me back and gets discouraging! Kelly assures me they'll get me through this - just seems hard to get a grip on that sometimes! <br />
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I'm off to get a few things ready before work tomorrow and Mark set up the Daytime Emmy's to record on the dvr. He'll be making something Italian for dinner - yum! He surprised me with making a cake for dessert!!! Will keep you posted and add more information soon!</div>
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Love to all of you!</div>
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Cyndi</div>
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P.S. I hope to get this pattern sometime and complete it! Recently started feeling well enough to pick up my cross stitching hobby again! Working on a couple other projects before even thinking of the one below!</div>
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Dulcehttp://www.blogger.com/profile/06600161748075718477noreply@blogger.com0tag:blogger.com,1999:blog-1012218600192528012.post-17407794449789223352013-04-20T23:25:00.000-05:002013-05-05T12:23:09.327-05:00April 2013 CO TripHello Family and friends! How are you? I want to fill you in on all my latest adventures! I had been doing fairly well, but had been having a bleed once in a while from inside my mouth or could feel it running down the back of my throat. I made an appt. w/my PCP to get a blood count and needed 2 units of blood. I'm sure some of you saw the photos I posted on Facebook that day! As always, Mom and Celia are very supportive and took shifts keeping me company during transfusion since I had to sit there the better part of the day! Celia took me out for a late lunch when my transfusion was over - I had been craving the delicious cobb salad @ Waterstreet, so that's where we headed!<br />
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I barely got a couple bites into the salad when I felt like I was bleeding and sure enough, Celia confirmed it as she could see blood trickling down my chin. Made it to the bathroom @ the restaurant and tried rinsing my mouth - finally got it somewhat under control and Celia got our lunch salads to go! She offered to stay w/me until Mark got home from work, but I told her I'd be fine. Turns out I had another bleed from inside my mouth shortly after she left. It wasn't a major one, but enough to keep me busy trying to pack my mouth and not get blood all over the place! Poor Mark gets home from work to see me still trying to control the bleed over the bathroom sink. Ugh! So, by this time it's after 5pm, but called my PCP to ask if he thought it was a good idea to get another blood count since I had just lost so much blood. I was so glad when Mark got home because by that time I was feeling faint and he brought me a chair to sit and I threw up. Anyway, got another blood count in the morning @ the lab, and needed to get <em>another</em> unit of blood. So back to the Spohn Cancer Center the following day - this time I told my family I'd be fine on my own. Everyone @ the Cancer Center is so friendly, that I felt comfortable going on my own. Soon as I was done there, I headed in to work! I have such great co-workers - one of them offered to lend me some dvd's and a book from the book club she belongs to, since she knows I can't really go out to movies, as I would worry about having a bleed while I'm sitting in the dark movie theater! The only movie I saw last year was Breaking Dawn Part 2 (because I'm such a </div>
Twi-hard!) and as it was, I fell asleep before the previews even started! Some of the medication I have to take make me drowsy, so if I sit still too long, I'll fall asleep! Mark had to wake me up before the movie started and I took a couple of Prednisone for some energy! Anyway, I thought it was so generous and sweet of my co-worker Lisa to let me borrow her things for my entertainment!<br />
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I don't know if I mentioned this in my last blog, but I had written an e-mail to Dr. Yakes P.A.'s and asked why I was still having bleeds when I'm supposed to be "done" w/procedures! Kelly's reply was that I have damaged, unhealthy tissue that still needs to be debulked from the left side of my face, so until that is done, there is a chance of having bleeds. Ok, I guess I can understand that.</div>
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So it's finally time for us to go back to CO - the original plan was that I would check into Swedish upon our arrival Tuesday, and have an MRI and Angiogram the following day to see if there was any trace of the avm left. Andie is one of Dr. Yakes P.A.'s and the one who got me registered @ Dr. Yakes office - I wanted a photo of her to put in the blog, so here we are, along with Mona, Dr. Yakes office manager!</div>
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Soon as I got settled in to my room, I had some lab work done, and I needed to get <em>another</em> 2 units of blood! Yikes! Meanwhile, it's snowing in Denver and that doesn't make people from South Texas happy @ all! The weather in Corpus Christi would reach up to 80 degrees that day - here is the view from my hospital room!</div>
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Here is our car rental covered in snow!</div>
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As much as you would think a hospital stay isn't any "fun", I can honestly say I love everyone @ Swedish! Here is a photo of the swan towels @ the window of my room! </div>
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All the nurses, techs, clerks, housekeeping - are awesome! I asked for my fav. Tech, Alex (a/k/a Taylor Lautner-Jacob from Twilight) and he was working another floor, but came by right away to see me! He's such a sweetie and a doll - look how he wrote his name on the dry eraser board in my room!</div>
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Caught up on the latest - some of the nurses that have taken care of me are either on another floor or have moved on to another job. I was happy to see my buds Dave and Elizabeth as RN's still there! Plus, ran into Victoria from Housekeeping too - Celia asked me to pass on a big hug to her! Victoria has always been so supportive and assured us I would be fine, as she had seen more severe avm cases (than mine) that turned out well! Another favorite nurse, Jack also came by to say hello! Jack took care of my new buddy from West Texas, Ashley Stanley that is a new patient of Dr. Yakes! Had about 4 Respiratory Techs come by and visit and got me everything I needed as far as supplies - I need to have a moisturizer/humidifier on my trach when I sleep!</div>
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I ordered dinner and Mark and I watched one of the free movies offered - Skyfall. Mark fell asleep right away, so then I decided to watch Breaking Dawn Part 2 and then I read from my Nook for quite a while!</div>
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Early the next morning I was taken for an MRI - and I had already spoken to my PCP here about taking a couple of Xanex before going into that tube! I didn't dare open my eyes once I was in there and have a claustrophobic panic attack! The tech had asked if I wanted to listen to music and I said yes! He had put some headphones on me, but I never heard a thing! I had a little bit of a coughing fit while in there, so they didn't get the clearest images, but I guess enough to show what they needed to know!</div>
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While I was having the MRI done (about 20 mintues in there - but it seemed like a lot longer!), Mark met a couple from New Mexico I think, that had been to Swedish the year prior to have embolizations done by Dr. Yakes. Mark said that while talking to the couple (the husband has the avm) they just weren't sure whether to continue down this road, of having embolizations @ Swedish. (I'll always respect a patients privacy and won't reveal too much, as it is not my place). Mark assured them they were <em>definitely</em> in the right place to be helped by the people most qualified to take care of the problem! Mark asked me if I wanted to meet them and of course I did! I gave them one of my blog cards and confirmed to them that even if it's been a <em><u>very</u></em> rough journey, this is the place to be to get the <em>ultimate</em> help with an avm! I've just recently been able to see that light @ the end of the tunnel, because for years we felt like this would last forever and we were just floundering and dealing with everything the best we could! I know I've probably driven Dr. Yakes staff crazy w/all my questions and wondering "how much longer" ... but they have always been so gracious and supportive! I feel like a little kid on a road trip - "Are we there yet, are we there yet"? I can't tell you how many times Dr. Yakes P.A.'s and patient coordinators have put up with my endless questions and concerns - they are the ultimate professionals and never had a negative answer or harsh word!</div>
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The next step was for me to have an angiogram, but from what I understand, Dr. Yakes was coming in from out of town and his flight was delayed, so I was put back in the hospital room until I could get the angiogram done in the afternoon! Luckily I didn't have much of an appetite, but I had gone w/out eating all day! It's finally time to go have the angiogram and I'm super happy to see Dr. Jen Qin, one of my favorite anesthesiologists! Hadn't seen her for severl procedures and she was so happy for me to be toward the final stages of my treatments! </div>
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She got me settled in right away and injected the "happy juice" into my IV, so I barely remember anything until I woke up in my hospital room! I do remember Dr. Yakes coming into the OR to give me a hug and kiss and talk to Mark a bit! I hear I had a bleed as Dr. Yakes finished my embolization - so I woke up with packing in my mouth. Soon as I was able to get out of bed, I got that packing out and rinsed and brushed my teeth! Luckily there was no bleeding @ that time!</div>
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I always dread having an angiogram because that means I have to lay flat on my back several hours and that is painful on my lower back! Can't get out of bed for several hours as I may bleed from the groin site where the angiogram was done! I'm so happy when I can finally sit up and have support under my knees and be in a sitting position! I was still groggy when Kelly came by to check on me when I was back in my hospital room. </div>
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Here I am Thursday morning getting some last meds into my mediport, then haveing the mediport deaccessed since we were ready to check out of Swedish! This sure beats leaving w/purple bruises all over my wrists from IV's - my primary care doctor told me I would love having a mediport!</div>
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This morning we are scheduled to meet Dr. Randolph C. Robinson - MD, DDS, FAACS - OMG, right?! (Yeah, I got that last OMG from "Sheldon" on The Big Bang Theory after he rattled off all his own credentials!) Dr. Robinson is the plastic surgeon that Dr. Yakes "sends his babies to" according to the P.A.'s! Dr. Quinn had already told Mark and I what an outstanding physician Dr. Robinson is - we were very happy to hear he was a dentist first as I knew I would be needing help in that area! We were meeting @ Dr. Yakes office - since we heard Dr. Robinson was in the last stages of relocating his office, so it was convenient all around to meet @ Swedish! He's going to be my new best friend!</div>
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Found out Dr. Robinson can practice out of Swedish, so that made me feel great! Had a wonderful talk with him - he could tell how supportive Mark was and he asked us to tell him all about what we'd been through w/the avm! Dr. Robinson took some photos of me and I didn't know that Mark had some photos in his phone he wanted to show Dr. Robinson - one of me the year Mark and I met, and a wedding photo of us! I had told Dr. Robinson about my blog and he asked if the photos Mark shared w/him were in my blog and they are! He did take several photos for his own records and said <em><u>he felt he could help me</u></em>! (For some, you may not know I've been having surgeries for 25 years trying to get rid of this avm)! I think now I can officially start getting a little excited about my progress! Dr. Robinson asked where I wanted him to start and I told him where ever he thought was best! So, he seems to think he'll work on debulking my left cheek and start working on my dental as some of my teeth and molars have broken and are decaying. It's hard to get in and brush my teeth since I can't open my mouth that wide right now. I use a child size toothbrush and really need to start using the Therabite. ( I've not used it due to fear of bleeding or have been bleeding, so can't use it to exercise my jaw and help open my mouth wider! ) Horrible, I know - so self concious about my breath, especially since our family is in the dental business! Between my brother-in-law Greg being a dentist, my sister a dental hygenist and my nephew Mark makes porcelain teeth and crowns! Dr. Robinson did mention that sometimes an avm can alter some of your bone structure, so I asked if I needed something like that taken care of, would he be the one to do it and to our relief the answer was yes! He said his goal was to make sure I could have a "normal", relaxed expression, and of course w/nerve damage, I would probably have a crooked smile, but I can live with that!</div>
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I read and belong to an avm support group on Facebook, and am sad to know so many people out there not knowing what to do if they have an avm, or are suffering because they can't find a doctor that knows how to help, or can't afford to fly in to see Dr. Yakes! Believe me, avms are not just about "appearances", they are dangerous if not treated properly and can definitely get <em>worse </em>unless the doctor knows what he's doing! Avm's will not go away on their own, that's for sure!</div>
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So, now the plan will be for me to return to CO in 6 weeks, and I'll have another MRI and Angiogram to make sure I'm completely avm free - since this past visit Dr. Yakes ended up having to use 14 cc's of alcohol on 8 different areas and do an embolization ( I had a "hiccup" like Shalon calls it, and needed an additional embolization)! Dr. Yakes told Mark he felt he really got all the avm this time! I<em> may</em> be able to start the debulking process during the next visit - we'll try and schedule everything soon! It will definitely take several procedures to get completely debulked and reconstructed - we're thinking anywhere from two to three years. Hard to put a time line on any of this, as a lot of it depends on how I heal or the results of the debulking as we go along! Dr. Robinson talked about using the skin from under my neck to put on my left cheek as he felt that area of skin was damaged and the skin under my chin appeared healthier. We'll see - he knows best, so we're trusting him completely!</div>
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Let's change the subject for a little bit - one of my favorite new Country singing groups is The Band Perry! Sibblings that have a great sound! Still adore Taylor Swift and Bruno Mars! I'm lucky I can listen to cd's while I work, so that makes the day even more enjoyable!</div>
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I miss my furry kids so much while we're gone! We show everyone photos of our babies and tell them stories about how much we spoil Hanz and Bella! Our neighbors have 2 dogs, so Shauna is kind enough to take care of ours when Mark goes w/me to CO! Hanz and Bella love going into their backyard to play with Kaleb (German Shepherd) and Colby that is a lab mix I think! Look @ my little Ewok! He's mommy's angel!</div>
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Last weekend we took Hanz to the Vet. for an allergy shot, as he tends to chew on his paws. While there, the Vet. asst. confessed to us that she just had to take a photo of Hanz when she had him in the back room to weigh him, because he's so cute! I had put a pink bow on Bella's collar, as she won't keep them on her ears and she's a girlie girl like her mommy! She was a big hit and got lots of compliments! Wonder if she'd let me paint her toenails pink? It's all about them in our household! I have to say, Mark is really the heart of our home! He works full time and then comes home to take care of three monkey's as he likes to say! He feeds, bathes and grooms Hanzarella and we both adore them and they sleep with us! They are great therapy for me to get my mind off all my medical stuff!</div>
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Bella has always been very vocal, and until we got her, Hanz rarely barked! Now, if Bella hears a horn honking on TV she jumps off the couch and starts barking! We let them out for a while when we get home from work and it's so funny watching them running in circles "doing doughnuts" in the front yard!</div>
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Ok, back to CO! As we were on our way to leave Swedish, we ran into Darlene, one of my favorite admitting clerks! Hadn't seen her in a while, so it was nice catching up with her!</div>
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Mom and Vicente had driven us to the airport for this trip, and Vicente surprised me with some extra cash to get myself something special! Is that cool or what? I have been wanting to return to my cross stitching hobby, so I asked Mark to take me to Fanci Mats and More in Littleton, CO! They are now under new ownership and I had e-mailed them ahead of time to request what I wanted! Here is a photo of "Buddy" (a black Shih Tzu) that the owner was babysitting! What a cutie!</div>
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Buddy is a little hard of hearing and couldn't see well, but he seemed to get along great!</div>
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Here I am in front of the cross stitch store! Turns out the owners name is Cindy, and she didn't have the lambswool I needed or the pattern I wanted called "A Good Marriage", but she is ordering it for me! I haven't stitched since we got Hanz four years ago!</div>
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We have a running joke in our family since we once saw an A.D.D. t-shirt in the What On Earth catalog where the words on the t-shirt start to say something, then the A.D.D. person get's easily <u>distracted</u> and the print of the t-shirt goes on with, .... "Oh look, a chicken"!! I think everyone in my family has A.D.D., so that's why I can joke about it!</div>
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Speaking of t-shirts, saw this one @ the Houston Hobby Airport - we wanted Starbucks, but settled for Dunkin' Doughnuts!</div>
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Our flight was to leave CO, head to OK, then Houston to Corpus Christi, TX. The flight attendant named 4 passengers (us included) that may not make their connecting flight once we reached Houston. Mark immediately texted our friend Dorinda that lives in Pasadena and she offered to drive us home to Corpus Christi if we needed! Do we have awesome friends or what? Luckily, we were able to make our flight, so we got home on schedule late Thursday night!</div>
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Ok, I think I'll finish off this blog entry w/some images I got off of Facebook!</div>
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Speaking of Facebook, Shalon mentioned that Dr. Yakes was in the United Kingdom recently, where an avm patient had read her blog as well as mine and was able to see Dr. Yakes while he was there! That makes me feel great, just knowing someone out there is reading and maybe benefiting from the experience that both Shalon and I have had on our avm journey's! I love handing out the card to my blog site, so that people can better understand what having an avm is all about!<br />
Woke up this morning and noticed there was blood on my pillow case. Once I was up I saw a streak of blood on my cheek and had coagulated blood in my mouth. UGH! This is what I'm still having to deal with, but @ least I can say that once I rinsed and brushed, it was ok. I'll be so happy when the bleeding stops completely!!<br />
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As always, I love hearing from anyone out there than has any questions! You can e-mail me at either <a href="mailto:dulce@grandecom.net">dulce@grandecom.net</a> or <a href="mailto:schumancynthia@gmail.com">schumancynthia@gmail.com</a>!</div>
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Thank you everyone for joining us on this journey! Next month it will be 10 years that I've been a patient of Dr. Yakes - I can finally see the light @ the end of the tunnel!!! Much love to all of you!</div>
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Cyndi</div>
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I really try and not let having a bleed overwhelm me, but somtimes that's so hard to do! I can't live in fear 24/7 of having a bleed, so I carry on the best I can, knowing God, my faith, family and friends are helping me through this!</div>
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P.S. Had anyone noticed that I had titled this blog entry w/the year 2012? I just caught that today and corrected it!</div>
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Dulcehttp://www.blogger.com/profile/06600161748075718477noreply@blogger.com0tag:blogger.com,1999:blog-1012218600192528012.post-44686418851055519542013-02-23T19:25:00.002-06:002013-02-24T07:35:38.085-06:00Guess what?Hi Family and Friends!<br />
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Celia and I recently got back from what may be my <u>final</u> embolization to treat this avm! <em>What</em>? That's what we said! Let me go back a little ways. I had been having a few bleeds here and there a few days before this trip to CO. <em>So</em> discouraging feeling like the bleeding will never end! Actually, I had a bleed as I brushed my teeth before leaving for the airport! The whole trip I would have a trickle of blood now and then, so I was always looking in the mirror and needing to have a tissue to dab my lip/mouth area! I kept worrying that I would have a big bleed while I was on the plane and would need to rush to the teeny, tiny bathroom and get blood all over eveything! Thankfully that did not happen!<br />
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Poor Celia had just gotten back from traveling for a dental conference and had a 2 day break before repacking and heading out with me! I am so grateful she makes time for me out of her busy life with her husband Greg and 2 kids Mark and Davis - not to mention all her wife, Mom duties, running a household, working with Greg @ the office covering for other dental hygenists and her hobbies (choir ministry) and pets! I was <em>not</em> looking forward to the cold weather in CO since it had been pretty nice and warm in South Texas! If the weather gets below 40 degrees, we don't like to leave the house! It wasn't too cold when we arrived, but by Thursday, I watched the big, fat snowflakes falling most of the day as I looked out the hospital window!<br />
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I had really tried keeping up with taking all the necessary meds to make sure my iron, potassium, calcium levels and electrolytes were @ a level where I would be able to have my procedure! It's kind of hard to do when I was having frequent bleeds and was more concerned with that and having to take meds to control the pain from the pseudomonas infection I had for a couple of months! I supplement my "diet" with Clear Ensure - I love the regular Ensure, but since it is a "milk product" that causes phlegm and I can't be hacking and causing possible bleed from the force of the hacking! I would drink Pedealite once in a while too - many times when I was having bleeds and my mouth was packed, I wasn't able to eat normally, so these supplements were necessary to maintain my health! Oh, and for any avm-ers out there - if you are taking strong antibiotics/steroids for a lengthly period of time, don't forget that may cause Thrush and that is extremely painful! I sure learned that the hard way! Now I make sure and take prescription Clortrimazol several times a day if I am on IV antibiotics or steroids! Having Thrush means its very painful to swallow - having to eat things like mashed potatos and oatmeal.<br />
<img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgBBPZmG8uchW6EPZeJGceD5lufZA3eFqmQA9hJNqmC_REi7snHHoREWVRRlBGNdL9Hn0yqu6o2irAUYboVDfSzbOoEkAxMkKB_eq5OZGrwxL7WOeFlbMD6fzpZTv6xg1KNjQotgy4TqkF4/s1600/getting+ct+scan.jpg" /><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhWfgwTp9TqmoKdvXSuJbWaas5qfQuDFrbLlqq0Hl6ztw_uHyDjzV3KeYYLapckZOcIQaNhAnBG2DmlYAqymPF4gc3b6qIJhyphenhyphenqTmit5zyV2w4HI4YnfkARNGyVsQBOUWOEGsaHjEfyvEa8H/s1600/Inf.+Dis.+Dr..jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhWfgwTp9TqmoKdvXSuJbWaas5qfQuDFrbLlqq0Hl6ztw_uHyDjzV3KeYYLapckZOcIQaNhAnBG2DmlYAqymPF4gc3b6qIJhyphenhyphenqTmit5zyV2w4HI4YnfkARNGyVsQBOUWOEGsaHjEfyvEa8H/s1600/Inf.+Dis.+Dr..jpg" /></a></div>
Back to the trip! I was happy to see Dr. Pinsinski (internal medicine) again - Celia had gone to the store to get me something and missed his visit. He's the one that said his first career choice had been to be an astronaut, so he's enjoyed talking to us about Mike Fossum being an astronaut! After running some lab work, Dr. Pinsinski said my levels were all good (yay!). Dr. Pinsinski ordered a CT Scan to check whether the infection I had been fighting had reached the jaw bone - negative. Had a visit from the infectious disease doctor (above) and we discussed being on an IV antibiotic for a couple weeks.<br />
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One of the first things I would end up having to wear while I was in the hospital, was these leg monitors! Support hose and then these massagers to make sure I was getting circulation! I don't like wearing them and have to be unplugged when I get up to go to the bathroom. Oh well.<br />
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The above photo is where I had applied a Fentynal pain patch on my inner calf and it burned my skin! My primary care physician Dr. Boynton had prescribed an inhaler spray (Dulera) to apply to the area before applying the patch - guess I missed entirely, huh? Oh well, it since has faded, but this is part of the fun I was having along the way! Speaking of fun, did I mention that I've lost hearing in my left ear due to avm? A couple weeks ago when I had an appt. w/the ENT here, while he was using the suction tool to clean out my ear drainage (ugh, I know) I remember thinking how <em>loud</em> it sounded! Then I realized I could <em>hear</em>! So, I'm hoping that once I get debulked, maybe I'll get my hearing back if something is just pushing against my eardrum or something.<br />
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Here I was getting my CT scan! The photo below is what I look like right out of having the embolization! I was not a happy camper when I woke up! Since Dr. Yakes does an angiogram, I have to lay flat for several hours before I'm allowed to get up and my back was killing me! I tried laying on my right side for a bit and that helped! Celia gave me some ice chips to help w/my thirst! After a bit I was allowed to @ least recline my upper body some, so that helped the back pain!<br />
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Here I am passing the time reading my Nook! I love having that and it's so convenient w/all the traveling I've done to CO! I had a small fleece blanket that has a photo of a puppy on it that Vicente gave me. I remember the first time I used it, Hanz pulled it off of me! Guess he thought it was his! Somewhere I have a cute photo of Hanz laying with this blanket and a cute yellow duck that Mom gave him his first Easter season with us!<br />
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Here is a photo of me with Victoria that is from Ethiopia I believe, and works in Housekeeping @ Swedish! She has always been so friendly and encouraging to us regarding my situation! Victoria has told Celia she has seen avm patients in worse condition than myself heal completely, so she would assure us I would be fine! When we gave her the good news that I was "done" w/my embolizations, she fell to her knees and started crying! She has always prayed for me and always asks for Mom, Celia or Mark (depending on whose with me)!<br />
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Lets change the subject for a little bit! My latest love is Bruno Mars! Mark got me his current cd for Valentines Day and I love it! I usually start my work day by popping that cd into the player on my desk as I enjoy my morning coffee and start my computer! I recently found out I'm driving the officer across the hall from my cubicle nuts by playing Taylor Swift all the time! Hey, I'm deaf in one ear and I thought I had the volume pretty low! I told him "we're never, <em>ever</em> getting back together, like <em>ever</em>"! Ha, ha!</div>
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Oh, thanks for asking about my kids! They are so precious! Such great therapy for me. I wish I could get a photo of them in action when Hanz gets Bella by her ear and they run side by side! So funny!</div>
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Here is my baby girl Bella Swan Cullen Schuman! My Hanzie loves to come over and sit on my lap! He seems to know that Mommy needs him for comfort and love!<br />
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We picked up the mail earlier today across town @ our P.O. Box and I got a nice surprise from Swedish! The nurses on the 7th floor sent me a thank you note! At first I thought it was a valentine because of all the pink sparkly hearts on it! Some of the people who took care of me @ Swedish signed it - including a fairly new Tech named Alex (aka Taylor Lautner from the Twilight movies)! He is such a cutie! He even put "Taylor" in parenthesis after his name! Everyone @ the hospital in CO is so awesome! I recently got an e-mail from Ashlely from W. Texas that has a venous malformation on her arm - don't know too many more details, but she just started seeing Dr. Yakes and agrees that his staff is incredible! She is just beginning her journey with Dr. Yakes, so let's keep her in our prayers!!<br />
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Oh! That reminds me, here is a photo of the lovely Mandi Shaw - one of Dr. Yakes P.A.'s, along with my sister Celia!</div>
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Mandi said she had to read my file several times when she saw that Dr. Yakes had written that I was "done"! Dr. Pinsinski said he read my chart 6 times to make sure he was reading what he saw! We had no idea we were this close. According to my chart, Dr. Yakes only used 4 cc's of alcohol! He always comes to see me right before I go under and all he said as he put his hands on his hips was, "well, I'm happy"! I figured he meant with my progress @ this point. He always gives me a hug and kiss - he is so incredible!</div>
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Our next step is this - I will return to Swedish in early April with Celia and have an MRI and Angiogram to see if there is any trace of avm. If there is (heaven forbid), then I'll have another embolization. Shalon had a couple of "hiccups" as she called them where she needed a little bit of embolization to knock off some left over avm! If there is no trace, then on that same trip, I have an appt. w/Dr. Robinson, the plastic surgeon that Dr. Yakes sends "his babies" to! That's how Mandi put it! Dr. Robinson will let me know when we can schedule him to "debulk" the left side of my face from scar tissue, fluids and old glue-like subtance other doctors have used in the past! Of course I can't help but be doubtful, because over ten years ago, Dr. Mawad in Houston told me he would be able to help me as well! Of course Dr. Yakes pioneered these procedures I've been having, and he has a fantastic track record! If Shalon hadn't gone through this first, I would have gone nuts already! If you check out her blog, she's got photos of her debulking process! Unfortunately, I still have a long road ahead, although we definitely have reached a milestone! I've already had a couple of minor bleeds - probably from the tissue breaking down where Dr. Yakes worked on it. I'm still wary of brushing my teeth or bending down to tie my shoes or something to that effect and not having a bleed! Until I get debulked and reconstructed (my lower lip needs to be fixed - yay, I'll be able to kiss my dogs! Never mind Mark right?) and I need a left earlobe) then I won't feel this is really over!</div>
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I do thank you for going with me on this journey and all your love, prayer and support! I will keep you posted!!!</div>
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Love,</div>
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Cyndi</div>
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P.S. Yes, Mark is very excited! Apparently when we called him from CO to give him the good news, he was @ our local grocery store (about 3 blocks from home) and he told everyone! We were in there the other day and I didn't know he had already told a lot of the clerks - and had asked Mark not to say too much yet, as I don't like to draw attention to myself. I may as well have told him to run and tell everyone because he did it again! I found him @ the pharmacy telling the employees because they filled my prescriptions for so long before the Fossums set up my account @ Walgreens! </div>
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Oh! I almost forgot - on our way home, while @ the Denver airport, we had asked for a wheelchair for me and met up with Adam from Ethiopia as he guided us to our departing gate! I remember him from one of my visits before and he asked how my treatments were going and gave Celia this beautiful prayer card he's been carrying around in his wallet - telling her to have me use holy water daily to bless myself with! He had remembered me from one of my prior trips and said he had been praying for me. Isn't that awesome?! We have met so many people along this journey that have given me so much support! Couldn't do this on my own, that's for sure!</div>
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I had to add this photo of me with P.A. Kelly and Dr. Yakes! All of them have been so patient, caring and helpful! In May it will be 10 years that I've been traveling to CO to have embolizations with Dr. Yakes every couple months! For the past year or so, we upped it to every 6 weeks! As always, I love hearing from you and can be reached @: <a href="mailto:dulce@grandecom.net">dulce@grandecom.net</a> or <a href="mailto:schumancynthia@gmail.com">schumancynthia@gmail.com</a> <br />
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Dulcehttp://www.blogger.com/profile/06600161748075718477noreply@blogger.com0tag:blogger.com,1999:blog-1012218600192528012.post-61056231204396578452013-02-03T09:20:00.004-06:002013-02-04T01:17:12.762-06:00Did you know ....<div class="separator" style="clear: both; text-align: center;">
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Hi again everyone! How are you? I'm actually doing ok. Saw my PCP - he said the staph infection is gone, and wonders whether I really have the pseudomonas one. I told him I had stopped taking the IV antibiotics, and he advised me to take 2 Zyrtec instead of my usual one, to see if that would help w/the itching discomfort symptoms I was thinking was an infection. Seems to be working ....<br />
Meanwhile, I just have to tell you how much I really do love my life! Can't wait to get back to it full time! My husband Mark has been so nurturing, loving and supportive - I'm so blessed! My furry kids are the best - so funny, loving and great therapy for me in forgetting my worries for a while!<br />
I wanted to share something with you that has been on my mind. Don't know how many of you are aware of some of our extended family - my brother-in-law Greg's younger brother Terry Fossum has written a book!<br />
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Gregs older brother Mike Fossum is an Astronaut! <br />
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My brother-in-law Greg Fossum, DDS - is saving a life - mine. Greg has always been the quiet one - doesn't say much, but you can see how he is taking in everything around him. I've known Greg since I was 13 years old! I just wanted to mention what a generous, fantastic person my brother-in-law Greg is! He has gone above and beyond to help me with my current condition! He and my sister Celia give me so much love, encouragement and make it possible for me to keep going to Swedish to get treatments for my avm from Dr. Yakes! The love they show for us is incredible and I can't ever thank them enough for letting me continue to "function" as normally as I can!<br />
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Marks brother Jim and his wife Shelley as I've mentioned, are so supportive in everything we do and are going through! Jim has outings with Mark and that @ least gets Mark away from always being my caretaker! Here's Jim with our furry kids! Hanz and Bella love climbing all over Uncle Jim when he comes over! I've always felt comfortable being able to talk to Shelley about anything - she is a great listener and has always offered her complete support! Shelley is very down to earth and easy to get along with!</div>
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I know it sounds repetative, but I just can't emphasize enough how grateful I am to everyone that helps me out! My mom went with me to my appt. with Dr. Boynton and paid for the visit too! I appreciate her taking time from her day to come be with me to offer emotional support!</div>
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My in-laws are extremely supportive too! They do so much for us, I'd be here all day listing all the things they've done to help! I miss them, since I've been having treatments, it's difficult to travel, so I haven't seen them since the last time they came to visit us in South Texas! Mark has since been to Ohio several times for different occasions, so he's been able to visit with Doris and George.</div>
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Unfortunately, I had a bleed yesterday and I was home alone. Thankfully it wasn't a bad one - I was sitting in the living room watching television and blood just started trickling down my chin. I have a mirror on the table near where I sit and happened to see what was going on. Rushed to the bathroom, rinsed my mouth and packed it with gauze. Mark was in Rockport with his brother Jim, but I didn't even call him when it happened. I figured I got it under control and it would be a matter of hours before Mark got home. Once Mark was home, I removed the packing successfully and just took it easy. I've been alternating between taking Lortab or Gabapentin for the pain I'm feeling on the left side of my jaw line. I don't think we'll get to the bottom of what is causing that until I see the infectious disease doctor @ Swedish in Colorado in a couple of weeks.</div>
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Since I've been taking the Gabapentin, that makes me so drowsy and I have fallen asleep @ work several times this past week! Yikes! I can't seem to get to bed until about 2:00 a.m., then I wake up @ 4:00 a.m. and I don't always go right back to sleep. I'll get up, go to the bathroom, sometimes get something to drink before going back to bed. Then before you know it, the alarm rings @ 6:30 a.m for me to get up and start getting ready for work! I just never seem to get enough rest!</div>
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Last night I had some applesauce and then some scrambled eggs for dinner - trying not to chew too much and cause any more bleeding. It seems to be coming from the left side (of course) between my cheek and gum area. I know this will all be over one day, so I just have to be patient. I look forward to being able to brush my teeth without worry, and being able to eat a thick piece of pizza with an ice cold beer! Some nachos with guacamole and a Mark-a-rita! Yay! I'll celebrate my recovery one day!</div>
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Thank you all for listening, being supportive and all your prayer! I do have good moments in between the bad ones - I love my life and treasure my family! I'll keep you posted!!</div>
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Love,</div>
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Cyndi</div>
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<a href="mailto:dulce@grandecom.net">dulce@grandecom.net</a></div>
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<a href="mailto:schumancynthia@gmail.com">schumancynthia@gmail.com</a></div>
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Dulcehttp://www.blogger.com/profile/06600161748075718477noreply@blogger.com0tag:blogger.com,1999:blog-1012218600192528012.post-15328418885582815592013-01-20T23:16:00.000-06:002013-01-28T18:07:50.087-06:00January 2013 EmbolizationHi! How is everyone? I've been wanting to blog for the longest time, but just haven't felt up for it and have been having complications recovering lately. This trip I was accompanied by my husband Mark - he is so amazing, can't imagine going through any of this without him. He takes such wonderful care of me - cooks fantastic comfort food and does everything around the house since I'm unable to do much in my situation! As much as I want to clean or get things done, when I'm having bleeds - all I can do is sit on the couch and wait it out!<br />
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As we arrived in CO, I just wanted to go straight to Swedish and get admitted - I was feeling weak and let Mark get me in a wheelchair as soon as we walked in the hospital! Let me say that what I'll be writing, isn't me "complaining", but trying to inform maybe a fellow avm-er or family member what I go through or what to expect. I would have liked to be given the heads up on lots of things and I've sure learned alot through experience! Whenever I get home from an embolization, a registered nurse from my primary insurance calls - and a few nights ago I spoke to a new nurse, so I had to go over all the fun I'm having! She seemed impressed with everything I do in order to stay on track, but I assured her it is a team effort to help me function! I was telling her about the vitamins I take (iron, potassium, calcium), plus the clear Ensure to supplement my diet, as I can't always eat when I'm actively bleeding! Every once in a while I also have some Pedalite - like when I was on a very strong IV antibiotic that upset my digestive system.<br />
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Back to the CO trip - we head right up to Dr. Yakes office on the 4th floor and are greeted by patient coordinators JoAnn and Becky! Got put in P.A. Kelly's office right away to start the admitting process. A few minutes later, JoAnn walks in with some Chi Tea for us from the Cafe downstairs! Yummy! What a doll! It really hit the spot and it made me feel sooo good! Got put in a room right away and got settled in for the night! <br />
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I guess because my levels were so low is the reason I was so weak. Turns out my blood level and potassium level were low. I felt like my head was not attatched to my body. I couldn't put things together and Mark had to keep "filling in the blanks" of conversations I had - just couldn't remember things. I remember nothing of The People's Choice Awards show - darn!<br />
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Was given potassium and a blood transfusion through IV to get me ready for having the embolization the next day. I barely remember being taken to surgery and it seems as soon as I lay down on the surgical bed I am OUT in a few seconds! Next thing I know, I'm waking up back in my hospital room. Here's what I heard happened. Apparently, Dr. Yakes had gotten up to using 16 cc's of alcohol and realized it was affecting my heart, so he stopped @ that point. He worked on my left inner ear area, so all that is black and scabbed over - ugh! Mark hadn't seen it until this weekend - I tell him sometimes I just don't want to burden him w/every single thing I'm going through, but it is a LOT! It's a wonder I don't lose my mind between the bleeding, infection, scabbing and ear drainage.<br />
I hear I was woken up too early from anesthesia - apparently I was irate and was put back to sleep longer. I have no recollection of any of this. I had to wear a heart monitor overnight, so I had lots of wires attached to me! Not sure what is going on w/this blog site - I'm trying to post photos, but it isn't letting me. Sorry! I'll keep trying!<br />
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Anyway, I got to see some of my favorite nurses - Dave Labadie - the original member of my "dream team" that took care of me the first time ever @ Swedish! Here he is w/another of my favorite nurses - Elizabeth! My "twilight buddy" Jill is moving to ICU - sad for me, but advantageous for their department! I need to make her a copy of my Breaking Dawn Part 1 Soundtrack from the Twilight Saga! She made me a copy of Twilight's New Moon soundtrack when she knew I didn't have it!<br />
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The day I got dismissed from Swedish, Mark and I headed to Sam's Diner (featured in the show, "Diners, Drive-ins and Dives") for breakfast! Got a photo of us outside as we were leaving because we were getting snowed on! We then headed to Barnes & Noble - I was looking for a particular book I couldn't find in Corpus Christi, and of course Colorado's B&N will carry more cross stitch magazines than our location will! <br />
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Got the car rental returned, headed to the airport and on home! I've been having some bleeds from my inside my mouth all weekend - so I've spent it all with my mouth packed in gauze! It just started bleeding spontaneously Friday night and I wasn't able to have anything to eat until about 10:00 p.m. Saturday night! By then I had tried to remove the packing several times, but kept starting to bleed. Once I had only one gauze in my mouth, I was able to "eat around it", so that is a relief!<br />
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I've still been fighting a pseudomonous and staph infection, so that has been making the left side of my jawline itchy and uncomfortable. Dr. Boynton advised me to stay on the oral Bactrim, but I feel it isn't helping. At this point, I'm just happy to not be actively bleeding. <br />
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Originally, we had hoped to take Hanz and Bella to Petsmart for their outing, but I just wasn't up for it w/the bleeds I've been having. I hope to have a decent day tomorrow - Mom will pick me up so I won't spend the day alone in case of a bleed. Mark has to work, but I have the day off. He has been cooking up a storm - so awesome! Made some salmon w/honey breaded topping the other day, along w/some acorn squash and safron rice! Had some italian cream cake from scratch for dessert! Right now food is very important to me - when I'm on steroids after an embolization, my appetite really increases! There are times though that I may be on an IV antibiotic that wipes my appetite away, and I will go the whole day w/nothing to eat but a baked potato or some broccoli w/cheese.<br />
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So, if Dr. Boynton's office is open tomorrow, I may call him to order some lab work and get a blood count on me since I've had bleeds all weekend. I may beg for some other kind of medicine to get rid of this ridiculous infection - the oral antibiotic is just not working and I don't need that distraction and discomfort on top of the bleeds! I haven't even seen anyone in my family since I've been back! I haven't felt well enough to go out to see them, although we talk or text several times a day. I'll probably see both Mom and Celia tomorrow. Celia will be going w/me on this next trip right around Valentines day!<br />
I'm going to publish this and try and insert photos later. This blog has a new format that I can't figure out right now on how to insert a photo like I used to! Take Care!<br />
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I told Kelly she looks like one of the actresses on the show Criminal Minds!<br />
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See all my wires from the heart monitor? I was wearing my own jammies!<br />
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Dave Labadie and Elizabeth - both excellent and fun!<br />
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Jill is my Twilight buddy! Super sweet and beautiful!<br />
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Here's what I look like right after the procedure!</div>
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P.S. Ok, I figured out how to insert photos - had to listen to a tutorial on the new format for the blog. Anyway - you know how I always say it takes a "team effort" for me to function - well, Mark's birthday was saved by my sister Celia & husband Greg! They know I'm not able to plan anything for Mark the way I'm feeling, so Celia surprised us with cooking a goose for dinner! She also had some german chocolate cake that you'll see Mark cutting with the "saw knife" our friend Dorinda got him!<br />
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Oh, let me back up a bit and mention the photo of us on our 20th Anniversary @ the Macaronni Grill! It was a nice evening, then we came home and took photos for our anniversary album! It just doesn't feel like we've been married 20 years - where does the time go?</div>
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Christmas day we got to spend some time with Mark's brother Jim and his wife Shelley! Here is Shelley playing the mandolin and singing along with her brother Chris! They had friends from church and neighbors over, along with good food, so we had a great time!</div>
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Here's some exciting news - my beautiful sister-in-law Diane is getting married next month! We are so happy for her!</div>
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Would you believe I still haven't been able to get those darned infections under control? My PCP did order an IV antibiotic, but I felt it wasn't working. He then ordered a different IV antibiotic that I started having an allergic reaction to! By this time, it was too late to try and get another antibiotic called in, so I've been taking the oral antibiotic Bactrim that the doctor had originally started me on. I figured that was better than not taking anything! I have an appt. w/Dr. Boynton in the morning so we can talk about getting me on a different IV antibiotic! Meanwhile, a nurse from Christus Spohn Home Health Care had come by my office earlier in the week to access my mediport. Then on Friday, she drew blood from the mediport to be taken to a lab to check whether the IV antibiotic was affecting my kidneys!</div>
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A few days ago I accidentally scratched a small bump on the left side of my face. Course blood came out all over the place. It seemed to take forever to get that stopped - but I see that little bump again. I have to be sooo careful when I wash my face that I don't scratch that area! I wash with one of those face wipes that you wet and foam up, then "rinse" with a small clean hand towel. Unfortunately, the way my lip is messed up right now, I tend to drool and some of that cakes up on my chin. Some of my nerves are damaged, so I can't always feel when I'm bleeding or drooling! I know, sounds gross, but that is the reality of my situation. I woke up @ 4am thinking I was bleeding, but it was just drool coming out the right side of my mouth. Ugh! I'm afraid to brush my teeth because that may cause a bleed. There's no way around that though - all I can do is hope that the avm has "retreated" to where I won't bleed easily when I brush! I rinse with some Biotene Oral too, as I can't open my mouth very wide due to the avm to brush properly. I have "cuts" on the inside of my left cheek from probably biting down when it's swollen - in any case, because of this, I can't rinse w/anything stronger because it stings!</div>
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I still have people asking, "So, is the doctor in CO <em>really</em> helping you"? <strong>YES!!!</strong> It's very hard for Dr. Yakes to give me a "time line" on how much longer I have treatments because each time he works on a different area and a lot of things depend on how I heal! As I mentioned earlier, </div>
Dr. Yakes had used 16 cc's of alcohol this past procedure and apparently it started affecting my heart, so he stopped. There's been time's he's used ALOT of alcohol and I'll develop a wound that takes a while to heal - so my progress depends on many things! I have coils in there from the time before to help stabalize the area. Dr. Yakes reminds me how far we've come and how much work he has done on me! He always comes to talk to me before I'm put under. He has such a wonderful bedside manner - he makes you feel comfortable and that you are in capable hands!<br />
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This past week I was working @ my desk and started bleeding spontaneously. Blood just started coming down my chin. I grabbed a box of gauze from my desk and headed to the ladies room. Luckily it only took some rinsing of my mouth and packing it with gauze to get the bleeding under control. Course I got blood all over my polo shirt, but I had an extra one @ work to change into! I continued working, but had been taking Benadryl for the itching and burning from the infection - well that made me drowsy and I was falling asleep. My supervisor walked by and asked it I was ok. She saw that I had my mouth packed with gauze and said I could go home if I needed to. Well, I was planning on sticking it out and staying @ work, so I started eating lunch @ my desk an hour or so later - and I started bleeding again from inside my mouth. Packed my mouth again and sent my supervisor an e-mail telling her I was leaving for the day. </div>
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Luckily, I've had a decent weekend with no active bleeding!!! That doesn't mean I'm not "anticipating" another bleed and find myself tensed up where I have to concentrate on just relaxing and letting go of that fear!</div>
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Well, I guess I've tortured you enough with what I go through with this avm. Still haven't seen The Hobbit. This whole year I saw one movie - the Breaking Dawn Part 2! I'd better get to bed. Last night I fell asleep on the couch a bit, got up @ 2am to go to bed. Woke up @ 4am and watched a tv show, then woke up again @ 6:30 a.m. Catch up with you soon!</div>
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Cyndi</div>
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As always, I welcome any questions and comments and can be reached @:</div>
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<a href="mailto:dulce@grandecom.net">dulce@grandecom.net</a> or <a href="mailto:schumancynthia@gmail.com">schumancynthia@gmail.com</a> Thanks so much for all your love, prayer and support! I miss my friends - just can't function well enough these days to be a good friend or get together w/anyone!</div>
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Ok, I'm adding more photos just for fun!</div>
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Here I am about to leave for work with my "what if" bag as Mark calls it! What if I need this, or what if I need that? It has medical supplies, books, magazines, snacks - anything that will make me more comfortable!<br />
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Here's Mom and Vicente laughing about something being said - during Christmas time!<br />
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Hanz, Mark and Bella!<br />
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My nephew Mark texted this photo to me the other day! Reminded me of our Hanz!<br />
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My Mommy's home, My Mommy's home! Bella greeting me as I get home from work!</div>
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Playing Farkle @ Mom's!<br />
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Dr. Yakes and anesthesiologist Dr. Quinn visiting w/me before I go under!<br />
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I thought this was cute!<br />
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Dulcehttp://www.blogger.com/profile/06600161748075718477noreply@blogger.com1tag:blogger.com,1999:blog-1012218600192528012.post-73009606819846618922012-12-23T00:43:00.000-06:002012-12-23T14:10:59.120-06:00Christmas 2012 BlogMerry Christmas Everyone! How are you? We're doing ok. Unfortunately, lately, we've been under the weather, but we might be on the upswing!<br />
First let me start by saying that Mark and I celebrated 20 years of marriage on the 19th of December! It does not feel like 20 years, it feels like only a few! We waited 16 years to "have children" and Hanz is 4 and Bella is 2!<br />
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The day after Celia and I got back from my last procedure, I was pumped on so many steroids (although still very swollen) when Mark and I took the kiddos to Petsmart to get a photo with Santa Claus! It's become a tradition every year - the first year Hanz was in the photo alone because Bella hadn't been born yet! It's cute to look back @ Bella's first Santa photo, when she used to let me put bows in her hair! Now she'll just shake them off! Actually, Mark took this photo and we liked it better than the one we got from Petsmart!<br />
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Several days ago I had told Mark that I had been gritting my teeth alot and my jaw line on the left was starting to hurt! I kept having to make the effort to not do that - I think the steroids I was on for the swelling after an embolization were catching up with me! I tend to not go to bed until 2:00 a.m. and wake up @ 4:00 a.m., then get up to get ready for work @ 6:25 a.m. I was tense, exhausted and had a major headache Thursday afternoon. I kept wanting to tough it out and stay @ work, but my headache got so bad, I felt like throwing up! I sent my supervisor an e-mail that I was leaving and ran into her @ the front desk on my way out. I had already started heading to the car when I realized I hadn't clocked out, so had to go back in again! I told my supervisor that I hoped to see her the following day. Well, unfortunately later that night, I did throw up and ended up spending the night where I fell asleep on the couch! When I woke up, I asked Mark if he was going to go to bed or stay on the couch - and he pointed out that it was already 6:30 in the morning! Yikes! I felt horrible, I knew there was no way I could make it to work. To boot - we had people coming over to install a new heater/airconditioner unit, so Mark knew I couldn't stay home. It was a little cold out and Mark knew the workmen would be in and out of the house all day! Called Mom and she came to get me so I could rest @ her house! She and Vicente both had a chiropractor appt., so I just sat in a big comfy chair in their living room with my feet up and dozed off a while! Mark had been massaging my neck before I left, so I was starting to feel a little better, once I did some more stretching and resting! Took an antibiotic, a steroid and a Lortab! When I called my supervisor to tell her I wasn't coming in, she said I sounded terrible! Then I completely forgot I had a wound care appt. that morning and didn't call them until about 11:00 a.m. to explain what happened! They know that when I miss an appt., it's because something major happened like I had a bleed or got sick, or was in the hospital! Last year I admitted myself to the hospital Christmas Eve night because I was feeling lousy! Turns out my blood count was low and I was dehydrated. Mark kept thinking I was going to have to be hospitalized again for IV antibiotics and I thought I had another pseudomonous infection because of the pain I was feeling! I started feeling better mid-morning, so I'm thinking it was exhaustion and tension combined giving me such a horrible headache! I know my sister Celia suffers from migrains and understands how painful they can be!<br />
Mark started feeling under the weather as well, so he went to bed early! Actually, he's been in bed most of the day! He is all sinusy and congested, so he's been taking Musinex and Robutussin cough syrup.<br />
I'm very surprised that I was able to get some Christmas cards out this year! Last year I was too sick to be out shopping @ all, much less sending out cards! This year I managed to do a little more, but we're still waiting to see how Mark is going to feel!<br />
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Got up early, even though again, I went to bed @ 2, woke up @ 4, etc. Had to brush my teeth and that's another ordeal. I end up getting the front of my pajamas all wet. I have to drink from one glass and spit out into another since I shouldn't bend over the sink and possibly cause a bleed. I use a "dry mouth" toothpaste and mouthwash Celia recommended that helps - otherwise, even the kiddy toothpaste was almost too strong for me. I have cuts inside my mouth and that stings if I rinse with anything stronger! Since I've had that tension headache I haven't worked with my Therabite lately, so I need to get to that again. Very hard to get way in the back to brush and I'm having some dental problems. I can't imagine having the luxury one day of being able to brush normally and not worry about a bleed!<br />
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Let me include a couple more photos of my darling furry children and I'll try and add some photos of our anniversary later! Take care everyone - we appreciate all your love, prayer and support! I've made a big turn around thanks to my sister Celia. For some reason, it finally clicked when we were talking the other day about my having a bleed. I allowed that to shut me completely down and I would vegg. on the couch all weekend. I know she's seen me having a bleed and completely understands what I go through, but she gently reminded me that I always do survive each bleed, so maybe I shouldn't let it get to me so much. She is completely right! I can't let that define me! I can't let that run my life and live in fear of the next bleed! If it happens, then I just have to deal with it and move on forward with my day!<br />
Your prayer gives me the strength to deal with everything this avm throws @ me - thank you for taking this journey with us! I'll blog more soon!<br />
Love,<br />
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Cyndi<br />
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P.S. Isn't this a darling puppy? Mark and I stopped @ one of my favorite stores on the way home from work and Bonnie was with her mommy shopping @ Gatherings! Here's another cute "dog" I saw on the counter @ Gatherings! Oh, and look @ my Moms beautiful orchid cactus! Then I had to include this cute photo of a Brussels wearing a sweater that I saw in a dog magazine!<br />
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As always, I welcome any questions or comments! You can reach me @ <a href="mailto:dulce@grandecom.net">dulce@grandecom.net</a> or <a href="mailto:schumancynthia@gmail.com">schumancynthia@gmail.com</a> Dulcehttp://www.blogger.com/profile/06600161748075718477noreply@blogger.com0tag:blogger.com,1999:blog-1012218600192528012.post-42199944284022828872012-12-10T23:29:00.001-06:002012-12-13T06:48:20.208-06:00December Embolization 2012<div class="separator" style="clear: both; text-align: center;">
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Hi again! How is everyone? Ready for the holidays? Well, Celia and I just got back from CO from my having another embolization done @ Swedish. But before I start talking about that, let me show you a photo of me with one of the wound care techs @ Dr.'s Regional hospital where I go twice a week! Her name (nickname) is Miro and she is a doll! We live a few blocks from the hospital, so I go to wound care, then on to work on some mornings! There have been times I don't feel well or up to dealing with avm issues, and it's people like Miro that help lift me up! She is spiritual, kind and always has a hug for me! She knows how much I love our furry kids, so she lent me a book about a dog and also got me a couple of Twilight posters from a magazine! Cool, huh?<br />
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My Aunt Elsa from WA was visiting during Thanksgiving, but I didn't have a chance to even visit with her! While she was in town, I had a couple of bleeds, so I didn't want to move off the couch! Mom was nice enough to bring her by for a few minutes while I was @ work, so we had a little time together! You can really tell how much paralysis I have in that photo - ugh! I asked Mandy, one of Dr. Yakes P.A.'s about the possibility of having anymore paralysis - she said there could be some, but there is also I might regain some feeling back depending on how the avm situation settles in the end. I can understand why people stare when I'm out in public, but I still wish they wouldn't! <br />
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Several co-workers had been sick and sure enough, by Friday afternoon I had picked up the bug! I immediately started taking antibiotics and Musinex and cough supppresant - I can't be hacking since that sometimes starts a bleed! I was looking forward to getting to CO, where I feel very well cared for! Arrived @ Swedish on Tues. - got admitted and settled in for the night! Had the chance to visit with so many of my favorite nurses! Some came by to say hello when they saw my name on the schedule - Judy, Laura, Jill (my Twilight buddy), Elizabeth, Burgen, Becky, Jack and even Alex (a/k/a, Jacob Black!) a recent tech hire! Can't forget Nicole, Kurt and Dave and Zufon! Got a photo with Victoria - she is so down to earth and always prays for me! Very enthusiastic and has told Celia she has seen patients w/worse avms completely recover, so she knows I'll be fine! I tell you, Kim Kardashian has nothing on me when I'm @ Swedish, I'm quite the popular patient! Even have the papparazzi hounding me! That's what the guy transporting me to OR called Celia as she was shooting photos of me with her camera for my blog!<br />
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Dr. Yakes used 15 cc's of alcohol this time - it doesn't sound like a lot, but I had so much swelling! My left eye was completely closed and the area under my chin was very swollen too!</div>
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I was admitted under Dr. Pinsinski's name, since Dr. Yakes was leaving the country right after my procedure. Heading to Telaviv and Cairo I believe! He won't be back for a while, so I had to wait an extra 2 weeks later than my usual appt. time for my next procedure! Going back to Dr. Pinsinski - he has an awesome bedside manner and we have a good rapport! Turns out his first career choice had been to be an Astronaut, so he was pretty psyched to find out Celia's brother-in-law is Astronaut Mike Fossum! Gotta hook up Dr. Pinsinski w/some space stuff when we return in January!</div>
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I am very happy with how the entire procedure went this time! No problems or set backs! I was anxious to get home to my furry kids and to be home with Mark!</div>
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As always, my sister is very generous and treated me to a new phone case @ the Denver airport from Anthony! I had purchased a phone cover from him before (it broke @ Celia's on Thanksgiving when I dropped it) and he remembered me and said he had checked out my blog! So here's Anthony! I ended up getting a fuschia blinged out phone cover and Celia got a light pink blinged out one! We had plenty of time to visit as Celia spent time with me in the hospital as she worked on some needlepoint! I had a couple of books on my Nook to read, so between that and the great staff @ Swedish, I had a very good experience! Would you believe the hospital food is great too? Every night for dinner I had the salmon with pinne pasta w/alfredo sauce and cheescake! Yum! Actually, soon as we picked up the car rental on arrival to Denver, we headed to Sams Dinner (that has been featured in "Diners, Drive-ins and Dives") for some down home cooking! Had some delicious meatloaf, mashed potatoes with gravy and veggies!</div>
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Guess I'll wrap up this entry! Speaking of wrapping, is everyone ready for the holidays? I'd like to send out some cards, but we'll see how far I get on that! For now, I'm taking it slow as I recover from this procedure. Back to work today and loving it! Take care everyone, and as always, thank you for all your love and support! Mark and I couldn't do it without you!<br />
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Cyndi<br />
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P.S. Had turned in for the night when I felt a trickle of fluid coming out of my mouth. Sure enough - had a minior bleed. Just had to get up and rinse my mouth out - didn't even pack it w/gauze! Whew!<br />
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P.P.S. Got a couple more photos from Celia, so wanted to add these on! I'm glad she took the pix of me right after getting to the room and sent it to Mark. Right away he told her I shouldn't have that purple tube on my trache. I kept feeling the area, looking to cover the opening in order to be able to speak, but of course being out of it, I wasn't able to figure out what the heck was around my neck! I didn't have my usual anesthesiologist (Wendy or Quinn), so I hadn't gone over what I expect to wake up to w/the anesthesiologist that was on duty. No biggie - just happy I didn't struggle or feel like I had to sit up right away. Which I probably actually did - Dr. Yakes does an angiogram each time to "see" what's going on and this is the first time I have a lot of really dark purple bruising in the groin area from the angiogram. Not painful or dangerous, so no problem. The other photo is just me having fun w/the dry eraser board!<br />
Oh! Found out too that doc won't be going out of the country after all, so I'll get to see him in 5 weeks as I have been doing, instead of having to wait the extra few weeks putting me almost @ the end of January - which was kinda scary, since I always tend to have problems right before my scheduled embolization. Whew!<br />
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Ok, I just had to throw this in! Aren't the pups just precious?!!<br />
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Dulcehttp://www.blogger.com/profile/06600161748075718477noreply@blogger.com0tag:blogger.com,1999:blog-1012218600192528012.post-19837953119009096502012-11-17T10:28:00.000-06:002012-11-24T11:58:14.714-06:00Team CyndiHey Y'all! How are you? I want so much for everyone to know about the avm world and what part all of you play in it - so that is what this blog entry is about! I'll try and keep it simple, ok? This avm is hard enough for me to understand and I'm <u>living</u> it - I can't expect you to "get it", although many of you really do! Mark lives it every day with me and I know my sister Celia really gets it too! As you know, "bleeds" can result in what looks like a CSI crime scene sometimes. Keep in mind that other avm patients may be having a different experience depending on the severity of their avm.<br />
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I was @ Wal-Greens the other day, filling a prescription, when a boy of about 9 years old came around the corner, saw me and went, "Eewwww"!!!!! I could tell he thought my appearance was maybe a Halloween thing. I heard his mom call out his name and I told him it was not polite to stare! This isn't the first time I've experienced this - several years ago, another kid @ a Halloween carnival looked @ me and I could tell he thought my face was not what I really looked like everyday - he thought it was part of my "costume". Mark and I ran into one of my lovely co-workers, Griselda several weeks ago @ Petsmart and she was with her son, about the same age as the two boys I had just told you about. Her son never flinched, hid behind his mom or stared - very well mannered and excited to tell us about a school project he was working on! Kuddos to parents that are raising well adjusted kids! You should see Griselda too - she would have every reason to be vain - has long straight hair, very pretty and dresses well - she is the classic example of beauty is as beauty does - she is very down to earth and is always willing to listen and to help in any way she can! Sadly, I've had adults blurt out, "what happened to your face"?! Yikes! I'd never ask someone, "hey, how'd you get stuck in the wheelchair, or how'd you lose the limb"? I don't want people feeling sorry for me either - just treat avm-ers as you would anyone else! I've been impressed every morning as I get to the front door @ work @ the Nueces County Probation Office, that one of the defendants in the lobby stands up to hold the door open for me as I pull along my "what if" bag as Mark calls it. It's a cart full of anything that will make me more comfortable while I'm @ work. From meds, to snacks and books, magazines, etc.<br />
I've had discussions with some cancer survivors (co-workers) that truly are grateful and appreciative of their lives - puts things in perspective and they have a very positive outlook after what they've been through! On the flip side, I am shocked to know someone having suffered a medical setback and appear not to have learned from their experience! Same arrogance, false appearances and superficiality. Wow. Guess we all handle things differently.<br />
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As many bleeds as I've had, you'd think I'd get a handle on it. Seems to throw me off physically, psychologically for a few days. Takes a while for me to process the experience before being able to relax a bit. I can't help but feel sad and upset several days after a bleed. Can't help but feel like there is impending doom - just waiting for the next bleed. I'm afraid to go anywhere, I want to stay home where I have what I need to try and stop the bleed. I worry about what I can eat - although a bleed can happen @ any time whether I'm eating or not. I can't eat just anything either, due to some dental problems - it's easier for me to have something fairly soft and not something really crunchy or hard to chew. I want this overwith already!!!!<br />
Mark is so great @ soaking my clothes and getting all the blood off of them. I never can get them as clean as he does! Celia has insisted my embolizations be no more than 5 weeks apart, as this is the only way this nightmare will be over - is to keep after it until we beat this!<br />
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I give so much credit to our maternal grandparents that set a foundation for our family of faith, love and prayer - otherwise I would not be able to deal with this hardship. Family and friends I appreciate your prayer and love! My Primary Care Physician, Dr. G. Boynton - I sure keep him busy as I've needed many blood transfusions. A doctor can go his whole practice and not see anyone like me w/an avm. Wound care techs, patient coordinators and nurses - you are awesome and so appreciated by me! Keep up your fantastic outlook - you are in the right line of work! If you are out there with an avm - you need to see Dr. Yakes! He has a fantastic bedside manner and knows how to help you! All Dr. Yakes P.A.'s, Kelly, Mandi and Andie are always so caring and professional! Putting the patient first and always there for us! I started with P.A. Dave, Rhonda and Eric and nurse Julie Labadie - all so fabulous!!! <br />
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Thank you Lord for surrounding me with the angels that help me get through each day and for giving me the strength to handle what I wish you wouldn't trust me so much with! I love my life with Mark and our two furry kids Hanz and Bella! They love me unconditionally and keep my spirits up! I need to deal with knowing that spontaneous bleeds will be inevitable until there is no trace of the avm left! I'll do my best not to whine about it and throw myself into the things I love most that make me happy! Love reading, Twilight, the #1 comedy The Big Bang Theory, country music and hearing from friends! Thank you! My co-workers go above and beyond always offering their help and treat me so well - especially my friend Diana - she's brave enough to venture out to have lunch with me knowing I could have a bleed (and have) while I'm out w/her!<br />
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Our families help us get to Denver and to maintain our home! Their <strong>generosity is enormous</strong> and they help us function in a somewhat normal manner! From helping us move out of storage rooms to fixing a broken window. Celia has come over with her cleaning lady and dusted, cleaned out our fridge and swept and cleaned the kitchen! My angel of a brother-in-law Greg (DDS) will get me back on track, along with my nephew Mark that makes beautiful porcelain crowns/teeth that I'll need replaced eventually! As I've mentioned before, Celia is a dental hygenist and does her best to maintain my teeth for now! Because of the avm, I'm limited to how wide I can open my mouth, so It's hard to get in there to brush and I worry about my breath and my teeth rotting! UGH!<br />
I want to mention my brother-in-law Jim and his wife Shelley again - they support us during this time and help Mark keep his spirits up too! Jim comes into town often from Rockport and takes Mark out for lunch and keeps in touch often over the phone! My in-laws Doris and George and other family members keep me in their prayers and this helps so much!<br />
I've had a trache for a couple of years now so that I can be intubated for my procedures and I'll have that until the avm is completely gone. Unfortunately I have some partial paralysis on the left side of my face. Hopefully there won't be any more before this is all over!<br />
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I'm always being asked whether Dr. Yakes is really helping me and are these treatments really working? Celia found Dr. Yakes on the internet and I would be bleeding out of control without his help! Since my avm is facial, it is extremely complicated and <strong>time consuming</strong>! Patients with an avm on their arm or leg can have 2 treatments each visit to Swedish, but I can only have one. Healing varies as well - some patients experience swelling, some cracking skin, etc. My stubborn pseudomonous infection took months to recover from - which meant being on an IV antibiotic several times a day for a couple of months and that just zapped my strength! My family almost literally had to carry me to my doctor appts. and wound care during that time!<br />
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I miss being the kind of friend I like to be, that sends gifts and cards and shows her friends how much she cares. I miss you Dorinda, Felice, Patty and Sylvia! I just can't function like I used to right now, but I have hope that my life will return to normal in a few years! I miss being a woman in love that enjoyed Mark-a-ritas and wish I could roll on the grass with Hanz and Bella! I miss my hobbies of rubber stamping, calligraphy and cross stitching - I just don't feel up to doing much of anything. Don't know whether my left ear hearing loss is permanent and for now I sleep in a hospital bed so I can be propped up to help the facial swelling and every night I sleep with a humidifier on my trache. I also sleep with a "bed wetting alarm" that I pin on my nightshirt in case I have a bleed during the night - the alarm will vibrate and make a loud noise to wake me up!<br />
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I know all of this will be over one day. I just wanted all of you to know that it is a <strong>huge</strong> team effort that allows me to be able to function! Team Cyndi! Thank you for helping me get through this and being part of Team Cyndi!<br />
I welcome your questions or comments any time!<br />
Love<br />
Cyndi<br />
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P.S. By the way, Celia and I are Team Edward. Haven't seen the new Twilight movie yet - too many people out and I don't need to be having a bleed in the middle of it all! I'll probably wait a week or so and see it w/my sister Celia and my husband Mark! He is such a great sport about my Twilight obsession! We rarely take in a movie - we'll venture out to see The Hobbit as well, but that'll be it for this year! I'll try and come back and put some photos in here, ok?<br />
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<a href="mailto:dulce@grandecom.net">dulce@grandecom.net</a><br />
<a href="mailto:schumancynthia@gmail.com">schumancynthia@gmail.com</a><br />
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Here is my handsome husband Mark holding 2 year old Bella and 4 year old Hanz! Dulcehttp://www.blogger.com/profile/06600161748075718477noreply@blogger.com0tag:blogger.com,1999:blog-1012218600192528012.post-84721319304312083432012-11-04T23:12:00.002-06:002012-11-06T00:25:40.344-06:00October 2012-DenverHi again! <br />
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How are you? Celia and I just got back last night from another trip to CO! We learn something new each time we go for me to have a treatment. I had some questions and was not necessarily happy w/the answers. I wondered if other avm patients Dr. Yakes has, have as much trouble w/bleeding as I do. Yes. I also had wondered and hoped that the closer I would get to finishing treatments (embolizations) that maybe I would be less likely to have a spontaneous bleed. The answer was, as long as there is a trace of avm, then there is a chance of a bleed. So, from now on until this avm is completely gone, I can have a spontaneous bleed - ugh! I can't help but think about whether this will really all be over one day. The answer I got was one I pretty much knew the answer to - after Dr. Yakes declares the avm is taken care of, he'll have the patient come back w/in 6 months to have an MRI done, to <strong>make sure </strong>he didn't miss an area, or that there has been any regrowth. If there is, then there will be more embolization done (usually very mininmal) and then another 6 month wait and another MRI done to see if all is clear. I'm thinking once a year has gone by, then the reconstructive surgery begins. I hope not to have any more facial paralysis or chipped teeth or losing crowns! As time goes on, I can wait a year and then longer to have the avm checked out and we make sure it won't come back!<br />
Some of my favorite nurses - Jill, Judi and Laura came to say a special hello, as did Jason and of course Alex (a/k/a "Jacob Black") was on duty, so I enjoyed talking to him! Burgess must have been off, because I didn't see her, and Saba has gone to nursing school from what I understand, so I don't get to see her as a tech to come in and take my vital signs anymore! Each night I was there, Jack was my nurse and he came in the room one time to find me nearly tipped off the bed to the right! He made sure an extra hand rail went up so I wouldn't fall off the bed! I always enjoy talking to Victoria - she is in housekeeping and is from Africa! Always in a good mood and assures me I will recover completely as she has seen many patients do so! She keeps me in her prayers and that is very much appreciated! <br />
The day before being released from the hospital, one of the nurses came by to ask if she could have my blog address to give to another Dr. Yakes patients that was in a room down the hall! Of course - always nice to hear from a fellow avm-er! I went down to the nurses station later and asked about the patient, hoping to meet her, but she had company @ the moment. We left the following day, so I never did get to meet this patient! I will always be grateful for all Shalon has done for me regarding having an avm and relating to someone pretty much in the same situation!<br />
The weather was decent - no snow during the time we were there! I think Celia said the lowest it got might have been in the 50's. I was pretty much stuck indoors @ Swedish the entire trip! We did get a chance to hit Wally World, so Celia treated me to some cute jammies and a nice jacket! Got a t-shirt from the space store @ the Houston Airport as well! We enjoy talking books - her with her I-pad and me with my Nook! These trips help us catch up - we're all so busy during the week but we always do make time to touch base w/one another @ least once a day by texting or calling each other!<br />
All in all it turned out to be a pleasant enough trip. I tell everyone @ Swedish that I tell people here how much they make their patients feel well cared for! Had fun talking to one of Dr. Yakes fairly new patient coordinators - JoAnn! She's got us hooked on drinking some Chi Tea from the coffee shop downstairs! I believe Becky is the other patient coordiator and she was telling us what she likes ordering @ Starbucks, so we got some good tips! Andie was the P.A. we dealt with most this trip - did see Mandi as well, but didn't get a chance to see Kelly!<br />
For the most part, I have been able to deal with having to go through this medical crisis, and sometimes I even forget about it until someone stares, I feel rotten or I have a bleed! I know there is no way Mark and I could get through this without our faith, love, prayer and support of our families! It's great to be home after Mark had been gone 4 days to OH. Then I was in the hospital a couple of days here, then Celia and I left for Denver! Hanz and Bella are probably wondering what's going on w/their folks coming and going all the time! I know when Mark was gone, they missed him terribly!<br />
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My sister Celia and husband Greg go above and beyond in helping us through this difficult time! From expenses to emotional support and lots of prayer! Marks brother Jim and his wife Shelley in Rockport give us so much support as well! They are both there for us if we need <strong>anything </strong>and never hesitate to let us know how much they care! If I didn't have all that, I would be a lot worse off! My darling husband is amazing - he often has to clean the bloody mess my avm bleeds leave behind since I can't bend down to do it myself! Mark knows exactly how to make my favorite comfort food, so even if I can't always eat what I want, @ least what I do get to eat is delicious! Mark puts in a full day of work - (sometimes working out in the hot, humid, Texas heat and that can really drain you)! He'll rest a bit and then make sure I'm well taken care of. Makes our dinner, takes care of the dogs if they need bathing, grooming, feeding - plus he picks up the chores I can no longer do depending on how I'm feeling! All I really do around here is the wash and that's not much, but all I can handle @ the moment!<br />
Here are some photos of our trip - Fall in Denver, leaves changing colors, something we don't see down here! Being transported to OR talking to Mark and then waiting in OR to be set up for procedure. The bulletin board on the 7th floor feature my peeps that take care of me while I'm thier patient! Then of course, that's me in front of the hospital sign - my home away from home!<br />
So onward we go ... hoping and praying for mininmal bleeds until all of this is behind me one day! Thank you for coming on this journey with me! Every single one of you matter and are a part of my recovery from what we are going through right now!<br />
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Mom always slips us some money to help w/expenses on these trips and I know she does a lot of praying! Her husband Vicente just celebrated 81 years @ the end of October and he is extremely supportive of what we're going through and makes sure mom is there for me!<br />
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Love to all! Mark & Cyndi Schuman</div>
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Feel free to write w/any questions any time! </div>
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Dulcehttp://www.blogger.com/profile/06600161748075718477noreply@blogger.com0tag:blogger.com,1999:blog-1012218600192528012.post-7131371281198687962012-10-29T22:06:00.003-05:002012-11-04T22:58:27.251-06:00Latest fun - yeah right!Well hi everybody! How are you? I sure hope better than I am, because I'm not @ my best right now. I had been doing sooo well for a couple of weeks! I was so happy, had gotten rid of the pseudomonous infection, feeling good, work was great ... so I was feeling ok about Mark going out of town for a few days to enjoy the celebration of his parents Doris and George's 60th Anniversary party! I would have loved to have gone, but there is just no way in the physical condition I'm in right now. Very high maintenance and I would have hated to have a bleeding incident in the middle of it all. Besides, it would have really tired me out too! This way, Mark could enjoy himself w/out having to worry about me. Can I just add that I really like the dress my mother-in-law Doris is wearing in the photo! She has excellent taste, her make-up and hair always immaculate - very stylish! Of course I can see how Mark will keep getting more handsome with age, since he looks so much like his dad George!<br />
Mark was due home Monday night of last week, and I woke up @ 6:00 a.m. that morning feeling wetness on my chest. Sure enough, blood! I got up quickly to go to the bathroom and spit out several large blood clots. GROSS! Picked Mark up @ the airport that evening - glad he was able to get home, as his take off flight was delayed a couple of hours due to thunderstorms in the area! Since I don't cook, I had been dying for Mark to get home so I could have some delicious meals again - wouldn't you know it though - soon as we were about to have dinner Tues. night I had a bleed. Called out to Mark to come help, so his dinner had to wait. Of course there was no way I could eat either! Got it stopped finally after packing my mouth with gauze for a while and both of us fell asleep in front of the tv. Woke up about 1:45 a.m. and told Mark I was going to remove the packing in my mouth. It was ok - but of course I had to pull @ the blood clots (gag!) toward the back of the left side of my mouth and the blood just started shooting out again! It was lasting a while and I was going through lots of gauze and running out, so I knew I'd better get to the emergency room! By this time it's almost 3:00 a.m. Luckily we live a few blocks from the hospital - so I grabbed a plastic bucket, some paper towels and headed out! Mark waited w/me in ER a couple of hours then decided to go home and rest. It wasn't until about 7:30 a.m. that I was finally admitted and put in a room, and my sister Celia showed up right then and stayed w/me most of the day! Mom came by as well - and Mark brought me a few things I needed later. I needed 3 units of blood to get my level up, so I stayed overnight. I always miss my kiddos so much and Mark had just gotten home too! Darn it!<br />
Course I was on a liquid diet, then soft diet. I'm still starving from Mark being out of town and then this happens! Course I'm afraid to eat and cause any more bleeding! My "meals" were juice and cream of wheat. Was released the next day - Mom picked me up and took me to get a decent meal @ Town and Country restaurant. Didn't eat much and she drove me home, knowing Mark would be home in about an hour from work! I was so happy to see my kiddos Hanz and Bella!<br />
Went to work the next day - can't just stay home alone in case I had another bleed, and @ least going to work keeps my mind occupied and am surrounded by people than can help if I have any problems!<br />
Took the kids to Petco and Petsmart Saturday, but that tired me out, so we came home after that. I had wanted to take them to a local Halloween event for pets, but there was just no way I could be out any more.<br />
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I feel so lost - I don't even know who I am sometimes. I can't just live in fear of another bleed, but how can I not after the terrible experience I just had?! It always takes a few days after having a bleed to feel I can relax a bit. So far, I haven't gotten there yet. I've been experiencing anxiety, hard time sleeping and afraid to eat anything but very soft food! I often wonder how much more I can take of this! If it weren't for the phenomenal group of people that surround me, I could not make it! My husband is incredible, I have the 2 cutest dogs in the world that love me, my family is awesome and always there for me and I have the best friends ever that pray for me and accept me as I am! My co-workers are always looking out for my best interest, telling me to take it easy, opening doors, offering a chair for me to sit and get comfortable ... I feel very blessed in that regard! I can't deny though that when I have a bleed, it totally messes with my head and I feel like this nightmare will never end! The only thing keeping me sane, is knowing that 2 fellow avm-ers (I know I've mentioned this before) have completed their procedures. I just want to be a woman in love, enjoying her husband and enjoying Mark-a-ritas and eating anything I want! For the most part, as long as I'm not bleeding or in pain - I can deal with my avm issues - it's having a bleed that throws me off! Mom wants me to keep going to church, but in order to "function" I need to take a pain killer and a steroid to get going. Well, the pain killer makes me drowsy, so last Sunday, Mark had to nudge me like 4 times during Mass because I started snoring!<br />
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I got a nice surprise from one of my "besties" like Amy Farrah Fowler says on Big Bang Theory! My bud Felice that lives in Dallas sent me a book in the mail (More letters from Pemberly) that I can take w/me to read in CO! Plus, she even included a gift card for Petsmart for our kiddos Hanz and Bella! WOW! I have such sweet friends that always think of me and keep me in their prayers and surprise me with things to get my mind off this horrible avm!<br />
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I'd better get packing - our flight leaves in 8 hours, which means I have to leave the house @ 4 a.m. and have Mark take me where Celia will pick me up and we'll head out to the airport so we can get there by 5:00 a.m! <br />
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I'll try and put in some photos later! Thanks always for all your love and support!!!!<br />
<br />
Cyndi<br />
<a href="mailto:dulce@grandecom.net">dulce@grandecom.net</a><br />
<a href="mailto:schumancynthia@gmail.com">schumancynthia@gmail.com</a> <br />
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P.S. Thought you might like to see a few photos from my in-laws Doris and George Schuman's 60th wedding anniversary! Thought Mark looked very handsome in this photo too! Then of course the photo featuring the family!Dulcehttp://www.blogger.com/profile/06600161748075718477noreply@blogger.com0tag:blogger.com,1999:blog-1012218600192528012.post-66656995968131756542012-10-06T08:31:00.002-05:002013-10-12T17:27:05.463-05:00Late Sept. EmboHi Everyone! We're home again! Sorry it's taken me a bit to write, but I needed to get my bearings after the trip, dealt w/a little bleeding and wanted to spend time w/Hanzarella before I sit a while @ the computer! Mark and I had a pretty uneventful trip - started with Mom showing up an hour early to take us to the airport!<br />
Luckily the flight from Corpus to Houston is short, because the old guy in front of me leaned his seat back - we barely have room as it is! Guess he was all comfy cozy, so he ordered a beer! It's barely 10 am sir!<br />
There were two lovely ladies to my right named Diane and Ruth on the stretch between Houston/CO! They are sisters and their husbands were horseback riding on a dude ranch in CO! I had to say, "like in City Slickers"? I believe Diane said something about thier husbands were sending a limo for them to the hotel to take them out to the ranch - cool! We "talked dog" since Ruth's daughter has a couple Jack Russells! They asked about my Nook and they really helped make my flight more enjoyable. Usually that last hour on the plane has me figety with anxiety and claustrophobia!<br />
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Soon as we landed - headed to my ENT appt. with Dr. Andre Reed - head of Voice and Swallow in CO. I had not see him in years - but every third visit I see an ENT to check my airways before an embolization is done by Dr. Yakes! It was great seeing him - he's lost some weight!<br />
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Went to dinner @ Mimi's Cafe in the Lone Tree area and then to a petstore to enjoy some pups! Finally headed to Swedish where Mark dropped me off in the lobby w/all our luggage as he parked the car. Right away I see one of my favorite nurses wheeling out a patient. Rick Smith is the best post op nurse I've ever had - he thought I was on my way out, but I assured him we had just arrived! Checked in @ the 7th floor nurses station to be greeted by lots of friendly faces, smiles and hugs! Jill (my Twilight buddy) was there, Dave Labadie (original dream team from first embolization) and Alex, one of the new techs (a/k/a Taylor Lautner)! During my stay I enjoyed being taken care of by more of my faves, Judi, Laura and Burgess! Didn't get to sleep until 4:30 a.m., but I would be the last one going in to OR the next day, so no problem!<br />
Lately, since I have been checking in the day before the embolization, I was under the impression that I no longer went to post op. Wrong! Apparently, I just wasn't waking up until I was in my room - except for this time. I woke up and guess I was feeling like I wasn't getting enough oxygen, so my instinct was to sit up from the flat position I was laying in so I could breathe better! Well, more often than not, Dr. Yakes does an arteriogram and that means a groin stick and I have to lay flat several hours afterwards otherwise I'll bleed all over the place from that stick! Course as I'm coming out of the anesthesia and all, so I'm just going with my instinct - but I remember the anesthesiologist Wendy and another nurse trying to tackle me back down to a flat position! I started praying Hail Mary's to calm myself down and knew I needed to relax as hard as that was! Aaak!<br />
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In case you didn't recognize Mark a few photos up, that's him still in the operarating room with me right before the embolization! Dr. Yakes unded up using 31 coils and 10 cc's of alcohol to stabalize or neutralize the arteries! Dr. Yakes P.A., Kelly tells us the coils are in deep - I had coils a few years ago that ended up being exposed as the wound was healing and had some bad bleeding issues. I keep holding on to the thought that all of this will be over one day - this is where a lot of your prayer comes in - please give me the strength to endure what is in store for me/us! My hospital stay worked out well - since I didn't have much of an appetite, I'd have Mark order what he wanted for meals, as long as I had some cream of wheat! Mark takes such great care of me - well, everyone does really! I tell people that I am sooo blessed to be surrounded by so many angels that help throughout my day. Everyone @ work is awesome and always helping in anyway possible! Always asking if they can help w/any task I'm doing or opening doors for me as I come through with what Mark calls my "what if" cart! I drag that hobby cart w/me to work and back every day and get asked alot what's in it. In case you don't already know .... it is soooo uncomfortable to "be me" that I bring whatever I can with me to make my day more enjoyable! From my meds, to snacks, my Nook, an extra cd. I have a couple new job duties that are working well. Since some of us @ work are having some free down time, I now sort the mail in a very nice mailroom! I get a good cd, something to drink and am able to go at my own pace and get my work done! Sorting through faxes, UA results and placing them in the right boxes for officers or departments! I also sort through offense reports in a file cabinet that an officer might need to complete a report and get that put in their mailbox. By the time that's done, I usually have a pile of files waiting for me on my desk that need to be taken care of!<br />
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Back to Swedish, after the embolization, it's pretty much just "hurry up and wait" until I am released. After showering I walked down to the gift shop and saw a cute stuffed toy that reminded me of Hanz I just had to have! My last night @ Swedish reminded me of when I got my trache - @ that time I was doing the same thing, talking and gesturing in my sleep! I am given steroids for the swelling after an embolization and that makes me warm. The little pockets under my tongue were swollen, so I couldn't even drink from a straw! I turned toward the right of my bed, since @ home I have a little fan on my nightstand - of course it wasn't there, because I was @ Swedish! I remember looking in the opposite direction hoping to see Mark since he would be to my left in our home bedroom, but he wasn't there. All this time you have to realize I'm medicated and more alseep than awake! I even patted the mattress a few times and called out to Hanz to jump up and be with me! I sure miss our kiddos while we are in CO!<br />
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We left Swedish Saturday morning by 8:00 a.m., returned the car rental and headed to the airport! Got home and Mom and Vicente were already there to pick us up! I stepped outside w/the Morins as Mark waited for our luggage and look what I saw! It was too good a photo op to pass up! I thought these guys were dressed up to pick up a kid, but no - it was Captain America that greeted his girlfriend with a kiss!<br />
So happy to get home to our babies! Our neighbor Shauna takes really great care of them while we are in CO! Rested all day Sunday and back to work on Monday! Mark had called that he would be working late, so I was home alone when I had a bleed that afternoon - darn! Ugh! That was bound to happen.<br />
Got some very discouraging news from fellow AVM-er Shalon on Facebook! I don't know the detaiils right now, but I do know that she has already been given the "we are done" twice, and had to have a little more embolization after a 6 month MRI follow up - but she just expereinced a massive bleed! Oh no! I was hoping the closer we got toward the end of the treatments, the lesser chance of bleeding! Apparently it's just not going to completely stop bleeding untill the avm is entirely shut down! :( Well, on the bright side - my pseudomonous infection IS done and I'll be back in CO with Celia @ the end of the month!<br />
Thank you everyone for keeping up with us! Enough drama! Talk to you soon!<br />
Love,<br />
Mark, Cyndi, Hanz and Bella!<br />
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I always hear people saying they can't leave a comment on my blog: you can always write to me @ <a href="mailto:schumancynthia@gmail.com">schumancynthia@gmail.com</a> or <a href="mailto:dulce@grandecom.net">dulce@grandecom.net</a> I would love hearing from anyone that has any questions about anything I'm going through - thanks! Have a blessed day!Dulcehttp://www.blogger.com/profile/06600161748075718477noreply@blogger.com0tag:blogger.com,1999:blog-1012218600192528012.post-70329329105492273302012-09-25T22:36:00.001-05:002012-09-25T22:36:43.951-05:00Late Sept. 2012Hi Everyone! How are you? I've been doing well, considering the circumstances! For me, as long as there is no spontaneous bleeding, I'm good! Haven't had much of an appetite lately - probably all the meds I'm always on messes w/my stomach. Poor Mark is always trying to prepare me something good to eat!<br />
This will be a quick entry, as I want to spend as much time as I can with our furry kids before we leave on another trip to CO! I always look forward to going, as I know I'm in the best care possible @ Swedish! Plus, I love everyone up there - they are so awesome! That is so important for a patient to feel safe, comfortable and well cared for! It gives Mark a little bit of a break from having to take care of me all the time too! I just found out last visit that Swedish has free WiFi - yay!<br />
Shalon was recently in CO - she went for her 6 month check up and needed a little more embolization - the she'll return in another 6 months for another MRI to see if she is finally AVM free!<br />
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Our babies just celebrated a birthday! Prince Hanz is now 4 and Princess Bella is 2! For dinner, they got one of those Ceasars Gourmet Dinners in Filet mignon (the ones w/the white Westie on it)! They are so funny and we love them so much! Last time we took them to Petsmart, a little girl kept telling her dad, "I want to pet the blonde one"! Hanz is always good about performing his tricks - dancing on his hind legs, sitting, laying down and giving Mark a left handed high five! Bella used to lick everyone, but lately she's been acting shy around people! Too cute! Big sister Midori helped celebrate the occasion too w/her own party hat!<br />
Recently, Celia took time out from her busy schedule to clean my teeth! Most of you know she is a dental hygenist and her husband Greg a dentist! My teeth are suffering as I go through my avm treatments - not too badly though. I'll deal with it.<br />
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Oh! I just finished reading a free nook book called All Roads lead to Austen - a Yearlong Journey with Jane by Amy Elizabeth Smith. I remember seeing it @ the Safeway in CO and wanting to get it. There were 2 free friday books this past week - one being Reader and Educator Guide to The Hobbit and Lord of the Rings. I'm only on Chapter 2 of The Hobbit - I'm taking it w/me to CO so I cn read it this time!<br />
If you ever have a chance, check out the Brussels Griffon Fan Page on Facebook - one of the breeders Brussels just had puppies! So precious! Oh, that is Bella taking a nap!<br />
Thank you all for your love, prayer and support. The journey continues ...<br />
Much love to all of you!<br />
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Cyndi, Mark, Hanz and Bella!Dulcehttp://www.blogger.com/profile/06600161748075718477noreply@blogger.com0tag:blogger.com,1999:blog-1012218600192528012.post-20137685398655985522012-09-08T08:09:00.005-05:002012-09-12T07:10:04.288-05:00Hi again!<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh9sWgoS4ifbdJ_LGgAOY3Leu7K5ZkPNmJKynlra7JxCjHGRDLTxUA-4_FS7tjYafrd9Kx9kgKAhIkU5N-y6dtqP_1P45y_bDjiPeiOi0R5SapoCzz8LyGYCl1VaULBPe4dO7s1ag6_0vDc/s1600/Mom%252C+Mark+and+Hanz.jpg"><img style="margin: 0px 10px 10px 0px; width: 259px; height: 320px; float: left; cursor: pointer;" id="BLOGGER_PHOTO_ID_5785796553455447602" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh9sWgoS4ifbdJ_LGgAOY3Leu7K5ZkPNmJKynlra7JxCjHGRDLTxUA-4_FS7tjYafrd9Kx9kgKAhIkU5N-y6dtqP_1P45y_bDjiPeiOi0R5SapoCzz8LyGYCl1VaULBPe4dO7s1ag6_0vDc/s320/Mom%252C+Mark+and+Hanz.jpg" /></a><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgmMKeci4-VU4viqqjUgxiasnbze1nO2VLZgSoshghhdyxgZ6Zz_EnN4fTBoaWEyCrYykCmLJYaVLrhKxMK9GUNFBfzNHhvwdGo3jWWpFQJxKONK1wO6az7Gco2kfoRWUc67X_GdMVMf6eS/s1600/Mickey+belonging+to+Terry+Rowe+Amore.jpg"><img style="margin: 0px 10px 10px 0px; width: 320px; height: 240px; float: left; cursor: pointer;" id="BLOGGER_PHOTO_ID_5785796542990850722" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgmMKeci4-VU4viqqjUgxiasnbze1nO2VLZgSoshghhdyxgZ6Zz_EnN4fTBoaWEyCrYykCmLJYaVLrhKxMK9GUNFBfzNHhvwdGo3jWWpFQJxKONK1wO6az7Gco2kfoRWUc67X_GdMVMf6eS/s320/Mickey+belonging+to+Terry+Rowe+Amore.jpg" /></a><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEip_Bza1BlsB-XyfJx1xz81o0NExq3N3e-FdwB7ur9ob3-0lyHNhPOshdRel0pdT5hRT36p6UfnN7AOO8s1KqTA8rBVJrzU6rc0TspCTVZ1GQa9BdC32M3qN5XckBfbkLcpiQe-pAz8rTQZ/s1600/Debbie+and+I.jpg"><img style="margin: 0px 10px 10px 0px; width: 221px; height: 166px; float: left; cursor: pointer;" id="BLOGGER_PHOTO_ID_5785796010496873522" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEip_Bza1BlsB-XyfJx1xz81o0NExq3N3e-FdwB7ur9ob3-0lyHNhPOshdRel0pdT5hRT36p6UfnN7AOO8s1KqTA8rBVJrzU6rc0TspCTVZ1GQa9BdC32M3qN5XckBfbkLcpiQe-pAz8rTQZ/s320/Debbie+and+I.jpg" /></a><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi24NkOodpJyS_dWpo14LI8NKZ0ThlGsXaEAv8M1z_YP93ODBb9H4H0l7M29dTnl2eSTcWKu-t0W6n6c7t_i71KWaawEFTzppf5vCKFtMY9JYjWd6_RNS4uK-22IJM-aK19iMmBYdtnFgZH/s1600/Mommy+with+Hanz.jpg"><img style="margin: 0px 10px 10px 0px; width: 221px; height: 166px; float: left; cursor: pointer;" id="BLOGGER_PHOTO_ID_5785796004245145858" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi24NkOodpJyS_dWpo14LI8NKZ0ThlGsXaEAv8M1z_YP93ODBb9H4H0l7M29dTnl2eSTcWKu-t0W6n6c7t_i71KWaawEFTzppf5vCKFtMY9JYjWd6_RNS4uK-22IJM-aK19iMmBYdtnFgZH/s320/Mommy+with+Hanz.jpg" /></a><br /><div>Hi everyone! How are you? I've been doing really great this past week! No bleeds - yay! Well, my place of employment changed insurances and it totally discobumerated some of my medical stuff! According to the insurance and our HR person @ work - nothing had changed, the benefits were all the same, but there was still some changes that had to be made. Had to say goodbye to Nurses on Wheels and find a new home health place! Really didn't want to see them go, Alma, Carlie, Melissa and Robert all took very good care of me! Alma came by to remove the needle in my mediport as that was always done every friday. My insurance e-mailed me the names of all the home health places in the network and I started with the one that had the name of Christ in it! I called Christus Spohn home health and spoke with a lady named Karen that was able to help me right away! I faxed her my insurance cards and before I knew it - I received a call from Debbie, one of their RN's! See photo of Debbie and I. She came by our home to put in a new needle in my mediport and access it so that Mark can give me the IV antibiotics! Unfortunately I'll have to do my own IV during my work day - I tend to be a little dingy and not retain information, so I'll have to write the instructions down step by step to make sure I'm doing it correctly! Debbie even brought an extension for my mediport so that would make it easier for me to handle! Well, just wanted to fill you in on the latest. Got a nice e-mail from a lady that has a 3 year old son w/an avm - she has been following my blog since January. I'm happy people out there are getting some information and I love hearing from anyone wanting to write! Actually, I thought there was room for a comment @ the end of each blog entry - but in case there is a problem I can be reached @ either: <a href="mailto:schumancynthia@gmail.com">schumancynthia@gmail.com</a> and I can access that from my phone or home computer. Or @ <a href="mailto:dulce@grandecom.net">dulce@grandecom.net</a> and I can only access that from my home computer. Here is another photo of Hanz and I - had just gotten home from work and he likes to come sit on my lap! Thanks everyone! I'm really excited about meeting Debbie - she is right around our age and very nice! Take care!</div><div>Cyndi</div><div>Ok, I'm also including a photo from the Brussels Griffon fan page of Mickey that belongs to Terry Rowe Amore. She looks a lot like our Bella! Also came across this photo of Mark, Mom and Hanz shortly after we had first gotten Hanz! Hanz turns 4 this month and Bella will be 2!</div></div></div></div><br />Dulcehttp://www.blogger.com/profile/06600161748075718477noreply@blogger.com0tag:blogger.com,1999:blog-1012218600192528012.post-41783630685313113042012-09-03T06:53:00.011-05:002012-09-03T17:48:16.866-05:00September<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgo6wASRHea1OrCo_xz2QkWgZL8b0p-QL7_-XcLTkMVWZr5_hw6y6txzOHZVaSqCQPk9mUoox8n-4OosYozQpczfjpLRq8pvHisxGSEvgfwGy8VJerZ-NEBqv1uZdpkVXFL5B9-ZrgCnuz2/s1600/Pets+in+a+Pickle.jpg"><img style="margin: 0px 10px 10px 0px; width: 211px; height: 320px; float: left; cursor: pointer;" id="BLOGGER_PHOTO_ID_5784085965713249762" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgo6wASRHea1OrCo_xz2QkWgZL8b0p-QL7_-XcLTkMVWZr5_hw6y6txzOHZVaSqCQPk9mUoox8n-4OosYozQpczfjpLRq8pvHisxGSEvgfwGy8VJerZ-NEBqv1uZdpkVXFL5B9-ZrgCnuz2/s320/Pets+in+a+Pickle.jpg" /></a><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiUgwZ8rsxODWFKVlBGY1GEItxMQDuCwo7gxZjWuNxrSGlr_AUqqXwUcfL80rYptsOLzt476qbSQFuQHtzVd0sCOjdjZ9FGhApOA5zxNdsKHxOc03RrcXIOFbJNEHXYkb3tQK29bzj3KvPt/s1600/doghouse+cartoon.jpg"><img style="margin: 0px 10px 10px 0px; width: 242px; height: 320px; float: left; cursor: pointer;" id="BLOGGER_PHOTO_ID_5783929983765234450" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiUgwZ8rsxODWFKVlBGY1GEItxMQDuCwo7gxZjWuNxrSGlr_AUqqXwUcfL80rYptsOLzt476qbSQFuQHtzVd0sCOjdjZ9FGhApOA5zxNdsKHxOc03RrcXIOFbJNEHXYkb3tQK29bzj3KvPt/s320/doghouse+cartoon.jpg" /></a><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh1LNy59_OugBtil23J_9nzcdOwnTtRX1i5G2fs4qUvPSuXlejAYI9EWBdImAx6NLg89eMwDzWS-4w90JWELnxjpUV842djkhWt3hvD-_bYGKFT2ijypf00meFlfGcyt2IXBA9uWapIt636/s1600/Nose+ring.jpg"><img style="margin: 0px 10px 10px 0px; width: 281px; height: 320px; float: left; cursor: pointer;" id="BLOGGER_PHOTO_ID_5783929974228366706" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh1LNy59_OugBtil23J_9nzcdOwnTtRX1i5G2fs4qUvPSuXlejAYI9EWBdImAx6NLg89eMwDzWS-4w90JWELnxjpUV842djkhWt3hvD-_bYGKFT2ijypf00meFlfGcyt2IXBA9uWapIt636/s320/Nose+ring.jpg" /></a><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhD4Y0Ff6wIJuOjhkI_7GK8xG59LB8YOfMR2MHd_DY7_7q204TCgI0rnH9C2R41JnYZw_56-AYheUI3l10KIDuO53YLIV_OUHZ9eiXL1g1NIgjL7QoHNCYXFNNE3fEHguGhv_SKTVVmoMm6/s1600/Dog+Olympic+cartoon.jpg"><img style="margin: 0px 10px 10px 0px; width: 320px; height: 318px; float: left; cursor: pointer;" id="BLOGGER_PHOTO_ID_5783928042153672818" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhD4Y0Ff6wIJuOjhkI_7GK8xG59LB8YOfMR2MHd_DY7_7q204TCgI0rnH9C2R41JnYZw_56-AYheUI3l10KIDuO53YLIV_OUHZ9eiXL1g1NIgjL7QoHNCYXFNNE3fEHguGhv_SKTVVmoMm6/s320/Dog+Olympic+cartoon.jpg" /></a><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgvmwuJnP-FWon8fqXh4txKGSFBL_h1eq99Cyvc4Do62l-njSaeHQV_djNSBiz8ZBDsuM_2P5VxM63EG7wOZXQ4BHgXB-wx16Z8JGvxJlGYAwvY_xaL2d0VOqv6GqM0CgnWC-QcYKjTIkA-/s1600/Big+Bang+Theory.jpg"><img style="margin: 0px 10px 10px 0px; width: 320px; height: 134px; float: left; cursor: pointer;" id="BLOGGER_PHOTO_ID_5783928010717062386" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgvmwuJnP-FWon8fqXh4txKGSFBL_h1eq99Cyvc4Do62l-njSaeHQV_djNSBiz8ZBDsuM_2P5VxM63EG7wOZXQ4BHgXB-wx16Z8JGvxJlGYAwvY_xaL2d0VOqv6GqM0CgnWC-QcYKjTIkA-/s320/Big+Bang+Theory.jpg" /></a><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj0u1Z2wB5Mdb0ixvr1XTEVl262qx64y4GutFhbHdtZoRVnlk_F5nzDnZ_DecXPfzCqzpUMkNKBskW89w6jgu8qXmY2ZwbkYmPc36jnaQKPWOMENkGWUxsTvqtKxPACOrYGxOm5Y9ZykH-Z/s1600/Hanz+Aug.+2012-3.jpg"><img style="margin: 0px 10px 10px 0px; width: 320px; height: 240px; float: left; cursor: pointer;" id="BLOGGER_PHOTO_ID_5783927171207948962" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj0u1Z2wB5Mdb0ixvr1XTEVl262qx64y4GutFhbHdtZoRVnlk_F5nzDnZ_DecXPfzCqzpUMkNKBskW89w6jgu8qXmY2ZwbkYmPc36jnaQKPWOMENkGWUxsTvqtKxPACOrYGxOm5Y9ZykH-Z/s320/Hanz+Aug.+2012-3.jpg" /></a><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjKC2YTAAzQIgZPwr9eJYvrLcnHeWuz5pey-gOeaB6te8gPnxHPKPf9O2ykV733I23tLYuFKAU653FJyUpyE_zELxom6s6EPJ01wIFonGJebfkxVL6C8G0dXK-HVkeLORYq1hKhreXX6CJF/s1600/kids+Aug.+2012.+Hanz-3+Bella-1.jpg"><img style="margin: 0px 10px 10px 0px; width: 320px; height: 240px; float: left; cursor: pointer;" id="BLOGGER_PHOTO_ID_5783927161056084546" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjKC2YTAAzQIgZPwr9eJYvrLcnHeWuz5pey-gOeaB6te8gPnxHPKPf9O2ykV733I23tLYuFKAU653FJyUpyE_zELxom6s6EPJ01wIFonGJebfkxVL6C8G0dXK-HVkeLORYq1hKhreXX6CJF/s320/kids+Aug.+2012.+Hanz-3+Bella-1.jpg" /></a><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjHaq0jZjy6C9JUiuHA4XBvinviRaaAYOeEHpE1KyVqsciT-itLH3SJKX0YxiINrbT7LIh2ozuhzxUcOfnYjrWF_iXSRMAW0iT0pBGGuDTjIO6cjOIQA56AlB1_kU4nWdCR16l7KRuONdzh/s1600/world+dogs.jpg"><img style="margin: 0px 10px 10px 0px; width: 320px; height: 320px; float: left; cursor: pointer;" id="BLOGGER_PHOTO_ID_5783926691747075682" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjHaq0jZjy6C9JUiuHA4XBvinviRaaAYOeEHpE1KyVqsciT-itLH3SJKX0YxiINrbT7LIh2ozuhzxUcOfnYjrWF_iXSRMAW0iT0pBGGuDTjIO6cjOIQA56AlB1_kU4nWdCR16l7KRuONdzh/s320/world+dogs.jpg" /></a><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgNUcbTQ6O2sT4JJWaUWp0tw_3NH5hpR_KSncllC_mmgzPZwVncD0Aao1nBLdWVcNNhBzIoKtkBe8lPD5rzVcMztBbGVTU6f2V5Yzag33djXnVVx20qkkDYtRVCrLlHCExlUhuPZxC0Wqfd/s1600/Hanz+%2526+Mommy.jpg"><img style="margin: 0px 10px 10px 0px; width: 240px; height: 320px; float: left; cursor: pointer;" id="BLOGGER_PHOTO_ID_5783926684620152626" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgNUcbTQ6O2sT4JJWaUWp0tw_3NH5hpR_KSncllC_mmgzPZwVncD0Aao1nBLdWVcNNhBzIoKtkBe8lPD5rzVcMztBbGVTU6f2V5Yzag33djXnVVx20qkkDYtRVCrLlHCExlUhuPZxC0Wqfd/s320/Hanz+%2526+Mommy.jpg" /></a><br /><div><div>Hello! How is everyone? I hope you are enjoying this long weekend we are having! I am soooo grateful to have this extra day - to recover from what has not been too great so far, darn! Yeah, I didn't want you to think I'm over here having any fun. Sigh. I feel like I'm a prisoner in my own home. Started having bleeding issues again. Missed this past Thursday @ work due to that. Then started bleeding as I began to eat my dinner Friday night. So that had to be put on hold a couple of hours - I ate it cold later, I didn't care, I was hungry! Being on steroids after an embolization increases my appetite! Was hacking a bit Saturday in the early hours of the morning and that started a bleed. UGH! I had really wanted to try and go to Mass, and be able to visit w/one of my sister's friends that is in town! Last time I saw her was @ our wedding! Whenever I have a bleed, I just feel I can't go anywhere, so I can be near a sink and the supplies I need to pack my mouth and try to stop it!</div><div>I spent Sunday sitting on the couch reading or watching TV. Didn't even eat/drink anything until about 3pm for fear of bleeding. Had some clear Ensure then and later, Mark made me some scrambled eggs. Dinner was mashed potatos and broccoli and cheese! So delicious! Then, I'm afraid to brush my teeth and start a bleed, as that has happened before, so I am anxious about that! It is now Monday morning and am soooo happy for the luxury of being able to brush my teeth w/no problems! Wow! It's the little things .... You know, this avm reminds me of a dragon wanting to come out of a cave - it attacks then goes back into the cave to wait until the next time the victim is unsuspecting. Yes, I need to read The Hobbit!! Mom had been wanting to take us to dinner to give Chef Mark a break in the kitchen, and we finally hooked up for breakfast Sat. morning! We took the kiddos to the Vet. for a quick check up and then met her @ Cracker Barrel! I'm telling you this because as I eat, I have to set up a mirror where I can keep an eye on whether I see any blood trickling down my chin. I'm lucky I get a trickle, sometimes the bleeds in the early hours of the morning come quicker as my mouth spontaneously fills up with blood and I run to the bathroom sink to spit out clots! UGH!!!! To give you an idea of how the steroids increase my appetite, I had: 2 scrambled eggs, hash browns, 2 small bowls of grits, a pancake and 2 pieces of cornbread w/apple butter!</div><div>The weekend hasn't been all a disaster - yet! I'm hoping I might still get to see Celia's friend Liz today! I had hoped we could take the kiddos to Petsmart as there are sales going on and it's an outing for them and I really need to get to Wal-Greens and pick up more meds and gauze to pack my mouth when it bleeds! I didn't even want to do that yesterday!</div><div> </div><div>On the bright side, I got on my Nook website and downloaded 21 free books! Yay! I love to read! Mom, Celia, Davis and I are all big readers! Greg likes audio books! I had been telling mom how I want to go back and read some of the classics, like "Grapes of Wrath" or "Wuthering Heights". Mom was @ Half Price Books the other day taking a bunch of her old books and picked up "The Grapes of Wrath" and is really enjoying it! I just love how some authors are so descriptive, you feel you are there or you are that character! I am Bella Swan Cullen! Ha, ha, ha! No, I'm not losing my mind (although the avm has me right on the edge @ times - the P.A.'s in Colorado swear they haven't sent anyone to the mental ward that is going through embolizations!), just wanted you to know my sense of humor is still in tact! As always, Nurse Mark is infusing my IV antibiotics 3 times a day over the weekend, as we keep fighting this pseudomonous infection! Oh! Great news - my brother-in-law Jim told Mark about a full size bed someone in his church had, so we're all finally sleeping in one room again! Yay! The kids are so happy! Thanks Jim! I had hoped to be able to visit w/Jim and Shelley over the weekend too - we'll see what this avm has in mind for me!</div><div> Bella hesitated to jump from my twin size hospital bed (I need to sleep propped up because of the avm) and Marks full size bed - Hanz mastered it right away! You would think they'd sleep where they had more room - nope! Woke up w/both furry kids with me on my bed! I love my babies - they are great therapy to get us through these rough times! The Olympic dog cartoon is Hanz - our nephew Mark calls him "little seizures" (instead of Little Ceasar's) because whenever we have anyone over, Hanz continuously wags his butt!!! </div><div> As always - we thank you for keeping up with us!</div><div>Love,</div><div>Mark, Cyndi, Hanz and Bella! </div><div>P.S. I added a cartoon and a photo of my favorite show The Big Bang Theory! Those guys are hilarious! Course I shouldn't just say guys, "Penny, Bernadette and Amy Farrah Fowler" are pretty funny too! Did you know that the actress that plays Bernadette doesn't actually speak in that pitch? It's weird to hear her in a "normal" voice! Also the guys that play Sheldon and Howard are each accomplished pianists and the actor that plays Raj married like the Miss Universe of his country not too long ago! "That's right, that's how we roll in the Shire" - Leonard dressed as Frodo!</div><div> I'd better go see what the kids are getting into! I may watch New Moon, as I just watched Twilight last weekend! Oh, and I am currently reading Pets in a Pickle on my nook! </div></div></div></div></div></div></div></div></div></div><br />Dulcehttp://www.blogger.com/profile/06600161748075718477noreply@blogger.com0tag:blogger.com,1999:blog-1012218600192528012.post-79403778210985847412012-08-31T07:02:00.002-05:002012-08-31T07:12:47.402-05:00Greetings Everyone! Hoping y'all are planning something special for the long weekend! I had a little setback yesterday, so I stayed home from work. Woke up @ 2am because I could feel the inside of my mouth was filling up with blood - ugh! Rushed to the bathroom sink to spit out blood clots and was able to control it within a few minutes. Slept w/my mouth packed in gauze - so disappointing! With as much alcohol as Dr. Yakes used, I really hoped I would be having a major turnaround and could finally rest from having these bleeds! Of course when I removed the gauze and brushed my teeth in the morning, I had a little more bleeding, so I decided to stay home from work. Just did not want to have to deal with having an episode @ work!<br />My sister Celia and her son (my gorgeous nephew) Mark came by to see me and brought me lunch! They are so generous with their time, love and support in every way and we are so grateful! My brother-in-law Greg will be celebrating his birthday Sept. 1st - he is the rock in our family! My father-in-law George celebrates his birthday a few days later too! Mark will be traveling to see his parents soon as they celebrate 60 years of marriage! Wow! Such role models in so many ways - very blessed to have their strong foundation in our lives!<br />I continue my IV antibiotics, since that pseudomonous infection had reached the bone and is hard to get rid of. Got a call from one of Dr. Yakes P.A.'s yesterday, checking up on my recovery. I am amazed that I have no pain and minimal swelling! Anxious to get to work today and function normally - let's pray the bleeding goes away! Thank you all for keeping my spirits up - I was telling the P.A. how awesome I think everyone @ Swedish is as well! Have a safe, happy weekend!! I'm hoping to clean house and enjoy Hanz and Bella! Ciao!<br />Cyndi<br />Dulcehttp://www.blogger.com/profile/06600161748075718477noreply@blogger.com0