Happy New Year Everyone! Please be safe this holiday and even if you don't drink, be looking out for those who do!
This blog is dedicated to someone very special to me - the Birthday Boy himself ... my husband Mark, a/k/a St. Francis of Assissi! I never used to like New Years Eve, because there was always the pressure of having a date! Wouldn't you know that the man I married was born on New Years Eve?! Now, I have the best date ever!
I know I go on and on about how wonderful Mark is, but he really is amazing! I used to wonder when I would get married and to whom. I kept waiting, and hoping for the right guy to come along. He sure was worth the wait!
Before Mark and I got engaged, we sat down to have a talk. I told him about my health issues, but little did we know what we were really in for! We had no way of knowing things were going to get to this point! I've just got to highlight a little of what makes Mark the love of my life! Not only does he do lots of little romantic things on a daily basis, but when we have been faced with this crisis (the avm) he could have given up, but instead his faith gives him the strength to look after me! Mark assures me we will get through this together and he is not going anywhere!
When I'm in pain, Mark reaches out to me and takes my hand and says, "give me your pain honey"!
When I was in the hospital a few weeks ago, he got up extra early, fixed me a cappucino and surprised me with it by bringing it into the hospital room before he had to go to work! That meant so much! It was delicious too! He spent all his time that he wasn't @ work or asleep, with me in the hospital.
When I have these "bleeds" and my nightgown is covered in blood, Mark soaks my gown and puts Spray & Wash and that gown looks like new again!
When I'm having a bad day, Mark is right there for me with one of his wonderful hugs and it's all I need to feel better right away!
Marks company is all I need to feel like I'm @ the best party ever and we're the only two people invited!
No matter how bad I look or feel - Mark makes me feel so special and loved!
Mark is my Prince, so that must make me a Princess! Wow! Once this avm business is over with, I'll certainly feel like one! Here are a couple of photos of my darling husband! That cat is our youngest cat - Giovanni, named after an older gentleman that is a waiter @ the hotel we stay @ in Englewood, CO for my proedures! The other photo is Mark w/the newest member of our family - a little Brussels Griffon, 3-4 months old and he has no name yet! Can't decide on one!
Along with Dec. 31st being Marks 49th birthday - it is also my Uncle Luis and Aunt Betty's 49th wedding anniversary! Congratulations y'all!
Happy Holidays to everyone and again, thank you so much for all your love and support!
P.S. Don't forget! We head out for procedure #31 next week!
Tuesday, December 30, 2008
Posted by Dulce at 9:30 PM
Saturday, December 20, 2008
I am finally getting around to finishing the final "chapter" of my last embolization trip to Denver in November! That was the trip Celia went w/me on and it turned out to be a week hospital stay instead of the usual over night! I've come to learn that 95% of Dr. Yakes patients get sent home the same day as their embolization - but since my avm is facial and extensive, it's best that I'm kept overnight! That week in the hospital took a lot of my time I might have been holiday shopping! To boot, I ended up having to go back into the hospital those 4 days here locally, so there went more time I could have been shopping or enjoying the holiday season! Darn! Oh well.
Here is the photo we've all been waiting for! The sister photo! My sister Celia had been trying to "edit" the photo, as she thought it was too dark.
Also, I want to include a photo of my two bears, Saba and Rulon! Saba goes with me to work every day and to all my doctors appt.s! I get so many comments on them both, so they are a nice distraction from my avm! I have fun dressing them differently - they make me happy, so I enjoy having them around!
Oh! I want to send a "shout out" to Dr. Zane, my ENT here locally! He is very supportive of avmers - I had given him Shalon's web site address once and he looked it up and had liked her site! I recently had an appt. to see him and know he was going to try and check my blog out!
Well, I am heading out to my next embolization Jan. 6,7 & 8th - and this time Mark will be coming with me! With any luck, we'll have a few minutes to spend with Shalon and her husband Josh while we are up there!
We hope everyone is having a great holiday season! I will certainly try to blog again sooner this time - as Marks birthday is New Years Eve! Catch up w/all of you soon!
Mark & Cyndi
Posted by Dulce at 10:37 PM
Friday, December 12, 2008
Thanks for tuning in! I need all of you so much and appreciate your love, prayers and support - that gives me the strength to go on! I'm thinking of you especially David Miller! Lets see ... where did this latest adventure start ..., Oh yeah, last week I was having a hard time keeping my pain level under control. I knew I needed to get in to see the doctor, and the soonest I was given an appt. was the following Tuesday with Tammy, Dr. Boyntons Phys. Asst. Tammy is great and she loves seeing my little Saba when I have an appt. Come Monday I was desperate to get in to see the doctor and called the office and was lucky Dr. Boynton had a work in that morning. I didn't know whether the small amount of puffiness under my left eye and the pain in my ear area (that little "flap" above the earlobe was soooo tender - ouch!!!) was being caused by a stubborn infection that wouldn't go away or what! All I knew was I needed help and relief immediately! Dr. Boynton gave me a choice of starting w/oral antibiotics or admitting me to the hospital and getting IV antibiotics which of course would be the quickest way to get things going! Mom had come with me to this appt. and I had my two bears, Saba and Rulon and I have to say say that Tammy stopped by the exam room I was in just to see Saba and she had not met Rulon yet! Most of the doctors staff commented on my darling furry kids! Anyway, back to my story! Mom and I had lunch and I went home, took a shower and packed a bag and headed to Dr.'s Regional to be admitted. Mom had gone home to get her crocheting and stayed with me until Mark was able to get to the hospital after work. So of course the fun began with IV's and blood work - the nurses and lab tech were good - just one try with no problems! Mark stayed w/me very late and finally went home. I was sleeping when I felt something on my neck and I could not believe I was having a bleed! I had not had a bleed since being back from Denver! I immediately pushed the call button for the nurse that got to me right away and I know the amount of blood she saw must have freaked her out. In seconds my entire nightgown was covered in blood and I kept telling her I needed a mirror to pull the dressing off so I could see where the blood was coming from and put pressure right on the area. Normally when I have a bleed, I go get a mirror, take the dressing off and put pressure where I'm bleeding. Unfortunately, I was hooked up to the IV and could not get up and away from the bed to help myself! The nurse called for help and I called Mark - we live a few blocks from the hospital so he was there right away! The nurse kept putting pressure on the area with a towel and that was almost getting that blood in my eye! I finally got the nurses to listen to me and get the mirror I had in my wound care bag. I removed the dressing and a big flow of blood was coming from the top part of the wound. Usually when I have a "bleed" the arterial flow is a thin stream of blood, like the size of the end of a pin. This time it was a thick flow and we know that area had some puss (probably due to the infection, and the area was painful) so since it was a weak spot .... therefore the bleed. Anyway - I held pressure on my face w/a towel until Mark got there and got everything under control. I know the nurses were looking out for my best interest, but one nurse said she wanted Mark to spend the night and move me to ICU where I could be watched better. Well, unfortunately of course, if I'm in ICU there is no where that Mark could sleep - so instead it was decided that I would stay in my room and a nurse was called in to sit next to the bed and watch me all night to make sure I didn't bleed again! By the time all that happened, it was already almost 2am and we all agreed Mark just needed to go home. I know I woke up about 3am and was talking to the nurse (it was a nice male nurse) and I slept some. Every morning Dr. Boynton would check in on me and I kept asking whether the blood test were showing an infection and it just seemed I never really got a definite answer! Mom stayed with me all day and she kept telling me to just rest, I kept yawning and my eyes were tearing from needing sleep, but I kept figeting and felt like crawling out of my skin! The nurse finally had to give me some Xanex, and one dose didn't help - a few hours later she gave me more and I finally slept some. It was decided that after that major bleed (the only one worse has been the one I had in San Antonio over the summer) I needed a transfusion again - 2 units. Of course that meant another IV in the other hand!
I thought of you again David, and how you eased my fear of having my first transfusion! All along this time, I had to keep asking for pain medication because it was just not being controlled! When I was in Colorado during that week I was @ Swedish, I had asked Justin (male nurse) how he was keeping me pain free so I could follow a similar schedule. He was nice enough to write it out completely, along w/drawing a chart and all. I gave a copy of that to the nurse here ... but oh well. The nurses were very nice and I know I'm just a rare case that baffles most medical staff.
Speaking of medical staff, I would periodically call up to CO to ask questions and seek help/answers! Dr. Yakes nurse Julie called and was very sorry to hear I was having a set back. I asked her if this would ever really, really be over for me one day, because I was just not believing it @ this time! I wanted to know whether she felt Dr. Yakes would be able to completely get rid of this AVM! She assured me that Dr. Yakes would be able to help and that he was very pleased with my progress ... and are you ready for this?!? Julie went on to say, that Dr. Yakes felt we were 8O% done! WOW! Now I'm not going to hold him to it - but just hearing a ball park figure of where we're at was wonderful to hear!!! Course once Dr. Yakes is done w/me, then Dr. Snively (Plastic Surgeon) will do his part and I have no idea how many reconstructive surgeries I'll need with him! Going back to Julie though - she felt I should not have had that embolization while I was in CO since I had already gone through so much w/the infection.
Then Rhonda (Dr. Yakes Phy. Asst.) called and we talked about all I had been going through. She felt like I did need to have that embolization, even after having the infection, because it's very important that we keep ahead of this avm and not let it get ahead of us! In all reality, Dr. Yakes would like to see me every 4 weeks (Shalon goes once a month!), but I'm doing good to get there every six weeks because that is when that darned avm reminds me, "I'm Here"! Rhonda agreed that since I was on steroids most of the time I was in the hospital this past time - the combination of the steroids and antibiotics is probably what I needed now. So, she was concerned about stepping on Dr. Boynton's toes, but I assured her he is a fantastic person and I felt he just wanted whatever is best for his patient! When Dr. Boynton wrote the prescription for the steroids, he gave me 10 mg. but I need the wompa steroids @ 20 mgs! Rhonda had already told me she would not be available the next day due to a class or something she needed to take, but she would have Eric, Dr. Yakes other Phy. Asst. call me. Eric is super nice and he did call and he too was concerned about overstepping on Dr. Boynton, but I assured him I felt Dr. Boynton would appreciate their input. Eric ended up calling in the steroids I needed. Dr. Boynton wanted to keep me one more day, but I pleaded to be able to go home! I had already been on the required 3 days of IV antibiotics, so knowing I had steroids too - I was anxious to have IV's and needles out of my arms!!! The lab tech came to take blood @ least 4 times if not more! I kept telling them it's no wonder I need a transfusion, y'all keep taking more of my blood!
Oh! I almost forgot! Wed. after work, Mark had gone to HEB grocery store to get a couple things I had asked for and ran into our friend Pauline Foegelle! She said we had been on her mind and Mark filled her in on where I was. She had invited Mark over for dinner, but Mark thanked her and told Pauline that most of his time was spent w/me in the hospital. When she got home, she told her husband Keith about running into Mark and he too said we had been on his mind. Keith calls me @ the hospital and asked if it was ok to come by and bring us dinner! Wow! Talk about nice! It was a cold night out and I kept telling them it wasn't necessary - but they wouldn't take no for an answer and we are so glad too! It was great seeing them and hearing about how their daughter Mary is doing! I always know how old she is, because she is in our wedding video in a baby carrier a few months old! So, on December 19th we celebrate 16 years of marriage and I want to say Marys birthday is in August or September when she turned 16! Not only did they bring dinner, but cookies, candy and the cutest little stuffed dog in a Santa Suit that plays (or barks) "We Wish You a Merry Christmas"! They really cheered us up just chatting about what all everyone had been doing lately!
Markie Poo Hoo came by to see me - brought a pretty arrangement of carnations in a Christmas sleigh! I told him his hug and kiss was the best medicine ever! He's a doll and right now he is having his own surgery for a deviated septum. Poor kid, can't breathe through his nose! Davis is on his way home from College Station today, so some time this weekend I hope to see both of them! Mom wouldn't let me go to see Markie before surgery since I just got out of the hospital myself.
Celia & Gregs friends The Satoris' sent a vase of white carnations with pine and fir. Mom brought me a beautiful and fragrant red rose from her garden, and Greg just stopped by with some goodies for me from the girls @ the office! I got some chocolates and munchies and Saba got 2 outfits and Rulon got one too! Mom & Vicente's friends came by while I was in the hospital, Pam and Gene - Jim knows Gene! Also Helen and Joe Lee also came by with a lovely get well card for me - they are dear friends of the Morins that all spend time playing Mexican Train and just enjoying each others company! Mom Schuman called this afternoon to see how I was doing - that was so sweet! They were heading out to Dianes to see her son Matthews girlfriend graduate from college! I told Mom Schuman maybe she could send a photo or two our way from the event and she was glad I reminded her to take the camera!
So I was finally sprung from Dr.'s Regional by 4pm Thursday - yesterday! Once I got home, I waited for Mark to get home from work - poor guy, he had to go 2 different places to pick up prescriptions, plus the medical supply place I get my wound care supplies since we needed some Tegaderm! I took a shower once he was home and put on some comfy jammies while Mark made a big pot of chili and cornbread to go with it! Unfortunately I couldn't eat too much of it - I have some discomfort on the inside left part of my mouth that hurts with that chili sauce. Darn! Luckily chili freezes well! Both Mom and Celia had brought me good books to read, so last night I felt like I was in heaven ... sleeping in our wonderfully comfortable bed w/my husband next to me, something good to read and NO IV's ANYWHERE! Whew! Am I long winded or what? Well I want y'all to feel like you are right there with me and I love to write! You know before getting that transfusion, I was just dragging and telling Mom that I didn't know how much more I could take! I know when most of you see me I'm upbeat, but I do have my down times and this last hospital visit was definitely one of those times I just felt like it was too hard to be cheerful! That's the reason you won't see but probably one photo (Mark only took 2) and he hasn't had time to download them on to the computer from the camera!
So there's my story folks! I'm feeling better - still not sure why my eye was puffy - I know the avm is blocking my inner ear where maybe the puffiness is coming from fluid build up - even though I have a t-tube in my ear to help w/drainage. I don't know - I just want to be able to keep my pain under control and not have a bleed!!! I really think that bleed was just due to that area being too moist and that avm has a mind of it's own! I do know how blessed I am that not only do I have my immediate family here in town doing all they can for me, but also my brother-in-law Jim and his wife Shelley have been very supportive and concerned. They sent me a lovely Get Well card in the mail! My in-laws Doris and George have been praying, along with Schumans and friends up in Ohio and Indiana and all over the U.S.! Lots of Fossums (my brother-in-law Greg) are also very concerned, his brothers Mike and Terry and their mom, Pat and some of his family in South Dakota! My moms family in Oregon and Washington and of course all our wonderful friends here! If it weren't for all of you and our faith to give us strength - Mark and I could not do this on our own! We need all your prayers and the combination of medical teams here and in Colorado! Let's look forward to the end of this avm business, ok?
Oh! As always - if you have a moment, please keep up with my new BFF Shalon! She has so much interesting information on other AVM-ers, plus all her own adventures! You can get to her web site from mine, or go to http://sites.google.com/site/shalonsavm/Home - you can read about all her trips to CO and she puts great medical information on there! Plus, as an added bonus - you must visit her new blog site - that is where she has information on other people that have avms and Shalon just always has cute stuff on herself on there. She, like me, also has an amazing husband that is extremely supportive and loves her so much! Joshua is super nice! You know one of the nurses was telling me that Mark looked so tired when he came in one day and they asked him if he wasn't getting enough rest. He responded with, "I can't sleep alone without my wife"! That's why I wanted Dr. Boynton to release me and not keep me that extra day - I needed to get home to my wonderful husband that I missed so much! Ok! I've gone on long enough! Thank you everyone! We love you all!
Mark and Cyndi Schuman
I'll try and post a photo later tonight!
Posted by Dulce at 11:10 AM
Thursday, November 27, 2008
Happy Thanksgiving everyone! Wow - we made it home for the holiday! Our family here kept worrying about whether we would make it home in time for Thanksgiving - we kept telling the PA's and nurses @ Swedish to set extra places @ the table for us! I still can't believe I'm home! Can't kiss Mark - since my bottom lip is extremely swollen!
The great news is - I think I finally stopped oozing, so I don't have to keep dabbing that area anymore. You cannot imagine what a relief that is - that was getting old, keeping an eye on that to make sure it didn't create another wound! Whew!
Thought you might enjoy some more photos of our confinment @ Swedish! Take Care!
P.S. Justin was absolutely the best nurse I had on the 4th Floor! He is one of those people that love their job and do it well! Celia still has a couple photos that I would like to share - but we'll do that later! Courtney was also a great nurse - she was very easygoing! Then of course once I was moved to the 6th Floor, (Monday) I got to see Saba! She always asks for Mark! I also had another excellent nurse on this floor that I had had before - Dave! He was on my "dream team" my first emboization - sorry didn't get a photo!
Posted by Dulce at 8:52 AM
Wednesday, November 26, 2008
Greetings to everyone!
As some of you know, I was scheduled for an embolization last week @ Swedish Medical Center in CO and that Celia would make the trip with me! I was excited about our trip because I knew we would get to see Shalon and Celia had been wanting to meet her! Shalon also sees Dr. Yakes and Dr. Reed for her facial AVM! We arrive in Denver in the morning, got our car rental and then shopped and had lunch. Normally I see Dr. Reed the day I arrive, but for whatever reason, he was not able to see me.
We finally go check in @ the hotel and found the room was very hot inside! We called the front desk to have someone check it out. Anyway, all night, I felt like my ear "drained" some and I was just not feeling my best! Celia tried to hurry the next morning to get ready so we could get to the hospital as soon as possible! I have a high pain tolerance, but turns out that I had a fever as well and I was just miserable! The ladies in Admissions were shocked to see me crying when I walked in, as I'm always upbeat! Anyway, I get an IV put in once I'm in Ambulatory Care and "wait" to see what is going to happen. I felt so rotten, I didn't even want to hold Saba or anything. Turns out since I had a fever - that my procedure was canceled! That was fine by me - I was very anxious about finding out why my left eye gets puffy! After being admitted, Dr. Yakes ordered me having an ultrasound and a CT Scan of my avm area.
Dr. Reed - Head of Voice & Swallow Inst. (that I didn't get to see @ his office the day before) came by my hospital room the next morning and did an exam. Yeah, that long scope up my nose (twice!), so I told him, "I don't like you anymore Dr. Reed"! So @ this point, we know I won't have a procedure, and the doctors have not agreed on what is causing my puffy left eye! I was put on some IV Antibiotics and was told I would not be let go without first finding out what the problem was. Which is just as well - no one here ever wants to touch me here in town because of the AVM!
Celia was glad to know that @ least I was in the right place to find out what the heck was going on! Our plans changed so completely - but there was nothing for us to do but listen to the doctors! We of course had to give up our return flight for Thursday evening. I kept thinking of more days w/the car rental and hotel too!
Since two days of IV antibiotics were not improving my look, Dr. Yakes group decided to send in the big guns. The doctor for Infectious Disease and Control came in and checked out the situation. He suggested a different and much stronger antibiotic and said we would have to stay another few days! I just burst into tears - I wanted to go home! Celia and I knew I had to be there - but that sure didn't make it easy to hear it! We missed our families! Meanwhile, the lab came by to draw blood on @ least 4 occasions because of the wompa antibiotics I was on - making sure they weren't hurting my liver or something! Do you know the whole trip I had 11 needle sticks? Five of those were IV's! Yikes! Oh! Mark reminded me - that with the groin stick for the angiogram - that would bring the needle sticks to a dozen during this trip!
Finally, we were seeing an improvement in my puffy eye and at least had some answers, but not the one we wanted - when can we go home!
Poor Celia, stuck watching me getting stuck w/needles was no fun for her either! She never once complained - she brought in almost every meal - as the hospital food was terrible! Celia had to get us some essential items @ Wal-mart since we had only packed for an overnight trip and this turned into a complete week in the hospital! She really cheered me up by putting up a poster of "Edward" from the movie TWILIGHT on the wall of my room! We were going to see the movie when it was released, but no one was releasing us from the hospital! We kept getting comments on it - most of the nurses had either read the book or had seen the movie! Celia got us some Rook cards, so I taught her to play Hand and Foot. Once we knew we were stuck for a few days, we made the best of it! See photos! She bought me a pink nightgown and even some cute clothes for my bears!
Did I mention that on some mornings it was 27 degrees and Celia had to scrape ice off the windshield - that is not the norm for us in S. Texas! I never left the room once I got in the hospital, so I didn't share in some of the "fun" she was having! There is a Greek restaurant that she brought in food from - also from Ricos Pizzeria - yum! Whole Foods Mart also became a frequent stop for food - it's not far from the hotel.
Ok, back to the miserable part were were experiencing. I wanted my dressing changed on my face because I had been wearing the same one already a few days. I could just tell that some of the nurses would not know what to do, so I got them to page the wound care therapist @ Swedish that has helped me before. Well, I had a bleed while she was trying to change it out! I was sooo disappointed in how that was done! One of the nurses got scared when she saw all the blood on a towel that the therapist was using to stop the flow of blood. By the following day, I told Celia that between she and I we would change my dressing better on our own. We were eating lunch, when ... you guessed it! Another bleed! The nurse on duty that day was impressed @ how quickly I got it stopped. We got all my supplies and got it redressed! Whew! I had been put on the Cardiac Floor as that is the only room that was available! Last time I had an embo - I stayed in recovery because there was no room! I had asked if a room came open I wanted to be moved to where more of the nurses had experience w/Dr. Yakes patients!
I knew Shalon was in the area - she was arriving the day I was to be discharged. I called her on her cell phone and she said she would stop by w/her sister Taryn before going to see Dr. Reed! Well, right before she stopped by, is when I had that bleed! See photo of Shalon and myself!
I want to say it was that night, that Dr. Yakes P.A., Rhonda came by and said since I was doing so much better as far as the puffy eye and no more fever - to get more "bang for my buck" I should go ahead and have a procedure in the morning! We opted to go for it - because if I hadn't, then I would let the avm get ahead and we're the ones that need to keep ahead of it!
Monday morning, I was moved to a room on the 6th floor, so my tech got to be Saba! See photo of Saba w/namesake! I would be taken to OR right from my room and then brought back there after the embolization. Rhonda said she would suggest to Dr. Yakes that he go easy on me due to my trauma I just had w/the puffy eye. No, he goes there and hits me with 22 cc's of alcohol! I heard I lost 10 cc's of blood during the procedure. I remember being in recovery and Dr. Yakes stopped by my bed and asked how I was, saying I was his sweetheart. Dr. Yakes was telling this to Rick (my favorite Recovery Room Nurse) who also claimed I was his sweetheart. Ok guys, I know what you're doing! One hits w/the ammunition and the other has to soften the blow! I could not have endured this much alcohol after what I'd already been through, if Rick hadn't been right there for me! He is very conscientious of my comfort level, thirst and pain level! Thanks so much Rick - you are awesome!
So ... back to the room and I still couldn't believe how much alcohol Dr. Yakes used! My eye was completely swollen shut (here I had just gotten it open from the trauma I had just got through w/the skin infection)! Did I forget to tell you that Dr. Yakes also did an angiogram - he usually does that every 3rd visit, but I just had it done last time! That means haveing to lay still in bed w/out bending my leg @ all until they tell me I can get up!
So, since I'm usually kept overnight for observation, I knew we could leave in the morning! Celia goes back to the hotel for the night. In the morning, she repacks everything, gets my prescription(s) filled and then comes to pick me up! We head out to return the car rental and catch their shuttle to the airport. We had just gotten off the shuttle when it took off w/my carry on bag! Yikes! Celia was able to get it back - so we went inside and started trying to get through security! We were flagged because our tickets had been purchased so quickly and only one way. We were dying to just get on the plane and get home - not having to have all these special screenings! My face is oozing some alcohol from an injection site, and if I don't keep dabbing it, it will burn a new wound in the area! With all that to worry about, and Celia making sure I'm ok while she carrys 2 totes from Whole Foods, my carry on and her purse, plus my eye shut - I just wanted to stop the insanity! So... finally, finally we have landed in Houston, where by the way we had to switch airlines, so we got them to ride us around in one of those carts - otherwise there was no way to make it w/all our junk! Had to go through security once more! Not too bad this time. Couldn't believe when we actually landed and had arrived in Corpus Christi! As we deplaned, I bumped my chest into the seat in front of me or something, and one of the lenses popped out of my glasses! Never did find it, so now I have to go get some new frames! I just wanted to be home with my husband for some love and comfort after our ordeal! I was happy to see all the Fossums be there for my sister Celia! It was great to see her boys and of course Greg! Mom and Vicente made it to the airport w/my Mark as well!
I remember laughing w/a co-worker a while back, about those items @ the store, about items that said, "My sister, my friend" - and wondered whether I would one day be @ that place, feeling that way about Celia. Well, I can honestly that day finally arrived after so many years. I told Greg never to underestimate his wife - she was a real trouper for me when I was so miserable and kept everything together! That was one tough procedure we didn't anticipate, but we made it! The longest week of our lives it seemed - but we did it! Thanks to all of you with your prayer, love and support and of course the Grace of God - we made it!
Happy Thanksgiving to everyone! I have a lot to be grateful for so .... goodnight!
Posted by Dulce at 3:43 PM
Sunday, November 16, 2008
Hi Family and Friends!
How is everyone? I'm almost ready to leave again for Colorado! This time, Celia will accompany me! In fact, we will try to hook up with Shalon and her sister Taryn! Shalon arrives the day we leave - but we'll have time to see each other for a bit! We'll definitely take pictures and share them with all of you!
Celia and I leave early on Tuesday morning and arrive in CO mid morning. I can't wait to get there - I have been in a lot of pain lately and the area under my left eye is back to being puffy again! My favorite part of the trip is being wheeled in to surgery and being put "under" - that way I feel no pain and just get some good rest! Next thing I know I'm waking up in recovery and hoping I see my nurse buddy Rick! If he's there - I've got it made in the shade! He will go above and beyond to make sure I am comfy, cozy and pain free!
I usually see Dr. Reed (the head/neck doctor)the day we arrive, but for whatever reason, my appt. w/him was canceled! My procedure will be the following day - Wednesday, @ Swedish Medical Center of course. I get booted out of the hospital the following morning - Thursday! About the time I'm being ousted from the hospital, is when Shalon will be arriving - so we're hoping to meet for lunch somewhere - before we have to return the car rental and head for the airport! Our flight leaves @ 5pm, but we need to be there @ least 2 hours before our flight leaves! I'm already missing Mark and I haven't even left yet! Sniff, sniff, boo hoo! I'll be talking both the kids with me, Saba and Rulon! Between Celia, the kids and a good book, I should survive missing Mark so much! Never mind the needles, alcohol and whatever Dr. Yakes has in store for me, huh? I love the whole group up there in CO - so I know I'm in good hands! Thank you everyone, for all your prayers and support! Love and hugs to Lupe from choir! I just spoke w/her this evening, she is a dear friend that keeps us in her daily prayer, as do so many of you! All of you should be proud to say you are a big part of a very special journey! Just think how wonderful it will be when it's all over and we can all say we did it together! Much love to all!
P.S. I'm putting in a photo of my little Saba - she is such a doll and I get so many compliments on her!
Posted by Dulce at 8:29 PM
Tuesday, November 11, 2008
Hi Folks! I can tell you now that this won't be a humorous blog, just a boring, factual one! Late Saturday night I had a bleed. Nothing major, because the surgicel stopped it. Enough though to get blood on my neck and around the neckline of my night shirt! Had a long day @ work on Monday - came home, got comfortable and in bed to get some rest! As usual, if I sit still too long, I'll fall asleep (due to so many meds that make me drowsy), so I woke up @ 745pm to the phone ringing. It was Mark and he was @ the grocery store wanting to know if I needed anything. He got home and I ended up watching TV in the living room, trying to catch up w/some shows on the dvr, and fell asleep! By this time, Mark was in the bedroom, and I woke up and felt that my neck was damp. I could feel the back of my hair was a little sticky, so I knew what that meant! I went to look in the bathroom mirror and sure enough - I could see on my wound dressing that I was having a bleed! UGH! I went to get Mark, we got the wound care bag and got the dressing taken off. Yup - a stream of blood was coming out! I was trying to put pressure on the area, but not before I got blood all over the front of my nightgown! Mark put some surgicel on the area that was bleeding and got it stopped! Got myself cleaned up and my nightgown soaking and Mark redressed the wound. Each day the area below my left eye is getting puffier too. If I can just get through the week, it's almost time for another procedure next week! I'm really hoping I won't have a bleed @ work or on the plane en route to Denver, like what happened during our last trip! This trip I will be accompanied by Celia! As always, all your prayers and well wishes are appreciated!
Posted by Dulce at 7:12 PM
Thursday, October 30, 2008
Hi Everyone! Happy Halloween! Be safe, whatever you decide to do tomorrow! A couple days ago I didn't think I would have anything to blog about, but of course now, I've got plenty! My Uncle Jesse is here, visiting from Oregon and my Uncle Luis and Aunt Betty are here visiting from Nebraska! Since my sister Celia and I lost our dad when we were very young, we always loved and respected our uncles so much! You know what makes me feel great? Both my uncles have taken the time to tell Mark how much they appreciate him taking such wonderful care of their niece! Here is a fun fact - Uncle Luis and Aunt Betty got married the same day/year that Mark was born! So, come December 31, Mark will turn 49 and they will have been married 49 years! We have laughed so much and had a great time visiting with everyone! (see photos!)
Went to Moms on Monday night because Vicente turned 77! Vicente is the best! He is so supportive of me and our entire family! He always welcomes us over and we always have so much fun! He makes sure to remind mom to call Cinderella (me)! We wish him many, many more birthdays!! Saba wore her "little black dress", and Mark made Vicente a delicious German chocolate cake! Mark included some Heath chips in there, along w/drizzling some chocolate and white chocolate over the top! We had picked up pizza @ Pizza State and the Fossums joined us as well! Minus Davis of course - boo hoo! Everyone loooved the cake - outstanding job Mark!
So Tuesday after work, I was sooo sleepy, I decided to take a nap! Mark woke me up later telling me dinner was ready (my friend Olgas favorite - Brauts w/Sauerkraut and German Potato Salad). He had just walked away when I sat up and felt that my neck was wet. You guessed it! Dang your good! A BLEED! What? I had been doing so well! I should have known it was coming - see photo of puffy eye! That's usually what that means - I get a puffy eye around the time I'm due to go back to Colorado, but this is early! After a few days of sporting the puffy eye, I could tell it wasn't going to get better, so I called Rhonda in Colorado. I described the eye and she felt some steroids were in order to get rid of that! Meanwhile, she also suggested I have a bone density test, as I've been on steroids periodically now for 4 years. Are we having fun yet? Yeah, poor Mark - I was just covered in blood, so Mark had to take the allergen cover off all my pillows (since I sleep almost sitting up) and my nightgown all had to be soaked and washed.
I'm having fun w/my little Saba! I take her everywhere, and the few times I don't, they ask for her! I took Rulon to work one day and Saba was missed - the clerks @ HEB ask for her too!
Wednesday, our dear friend Terry Schneider had a Mass for our intention, so we went to ST. Pauls that evening. Thank goodness Celia called Mark on his cellphone - we had both fallen asleep and ended up being late for Mass! I was happy that Celia made it out there too - Terry includes the Fossum family in the Mass intentions as well! Rev. James Stembler always has time to talk to us for a few minutes after the Mass and offers more blessings!
So, that has been our last week or so of adventures! As always, I couldn't get through w/out my darling husband Mark! He makes me so happy and takes such great care of me! If I'm not feeling my best, he picks up my slack around here, so not only does he make dinner, but sometimes cleans up afterwards too! Woke up from a nap today (the Neuontrin makes me ridiculously drowsy) and found Mark had gone to the store, picked up my prescription and made dinner!
I thank all of you for all your prayers and well wishes - I sure need them!! Thank you Terry Schneider for all the Masses you have for our healing intentions! This is a hard journey and sometimes I don't handle this well. Last week seems everyone I saw was staring @ me or asking what happened to my face! For some reason, EVERY time there is something on the Health channel w/someone w/a huge tumor or something on their face, people feel they must tell me about it! I really don't want to hear about it - I just want to forget about mine unless I'm in pain or bleeding! I thank all of you that treat me normally and so many of the people I work with are so nice and helpful! This means you ladies in the Tax Assessors Office, Martha Sanchez in Risk Management and Connie Morgan in IT! I've mentioned them before, but they are just the best! There is another lady in the Auditors office that us super sweet, her name is Ida and she always has a kind word for me and asks how I'm doing!
If I could ask for a teeny favor of you - It would mean so much to me if you included my e-mail friend from Holland in your prayers! Marijn is going through so much - he just had his avm surgically removed and lost lots of blood! He is having embolizations now and also the hyperbaric oxygen treatment! Shalon had told me about the latter treatment and I had told Marijn. This has been very helpful to him, so thanks very much Shalon! Shalon just got back from her 9th procedure in Denver - please do keep up w/her blog and website! It's interesting how both she and I have avms on our face, yet there are different ways to medically treat us @ different stages of our avm! This past time, Shalon just got all coils (yikes!) and no alcohol! She has inspired me so much and helped me set up this blog so I can keep in touch w/all of you! Please pray for her as well - that all avm-ers will heal! Thank you for visiting with me and being part of my journey!
Love to all!
P.S. Don't forget Daylight Savings Time on Sunday (or Sat. night)!!
Posted by Dulce at 9:36 PM
Wednesday, October 15, 2008
Hello to all who stop by for a visit! I really hope your world is going just the way you want it! Take time to appreciate and enjoy feeling well if you do feel good today! Don't take those days for granted! Ok! Here we go!
This morning, I am sore from that fall I took yesterday! Aches and pains I didn't count on having this morning! Let me also reach back to late last night when I was trying to fill my prescription for the oxychodone extended release for pain. Originally, that prescription was given to me in CO. Well, HEB here did not want to honor it, so I had dropped it off @ my primary care physician Tuesday so he could rewrite it for me! No problem there - Mark picked up the written prescription that afternoon. Well, by the time we took a nap, got dinner, etc. - we were heading to the 24 hour Walgreens near our home to get that filled about 9pm! I had taken my last oxychodone that evening too! Turns out, they don't have but a few pills, so we were sent across town to the other 24 hour Walgreens, and by now it's almost midnight! Once we get there - the pharmacist says, she can't fill it until they fax my primary care physician a form that he needs to sign. My insurance had approved Dr. Yakes giving me this medicine, but NOT my PCP! Great! I have NO PAIN MEDS! Ok - I thought I could get by with taking the Hydromorphone for breakthrough pain to get me through while I worked, until the pharmacy could get my doctors signature and approval. So ... I went to work, took my "weak pain meds" and proceeded with my day. Lets add the fact that it will rain all day today into the mix! If anyone knows what that means around here - let me spell it out for those of you who don't! H-U-M-I-D-I-T-Y!!!! So the morning is not so bad, my friend Diana had asked me to join her for lunch and Mark would be joining us as well! So, when it's time for us to leave - I knew it was raining and I grabbed my purse and umbrella - completely forgetting my wound care bag! Soon as we stepped out of the building, it felt like a sauna out! The heat and humidity was almost too much! We head to the restaurant, Mark is already there and we place our order. We hadn't been there 10 minutes, when Diana gets all excited and starts pointing to me - right away I suspect the worst! Of course! I'm bleeding! I grab a napkin and put it to my wound area and get Marks attention to help! Of course we know that I left my wound care bag under my desk @ the office! Let's also add that my left ear is hurting and the tube in there is clogged and all I can hear is the muffled sound of my pulse constantly. I know there are people with bigger problems - but this is just something I'm going through right now and I really have no right to complain - but I will anyway because this is my blog! Come on! I have to add some humor, ok?
So, luckily, this is not a major bleed. Diana gets up and finds us more napkins while I'm putting pressure on my face w/one hand and eating enchiladas with the other! Got the bleeding stopped soon enough - finished our lunch and we headed back to the office where Mark redressed the wound area! At this point I'm debating - should I go across town and try and get my pain meds that are finally approved and ready? Oh no - Cyndi thinks she is superwoman and can get by the next few hours just taking another dose of the hydromorphone because I don't want to have to ask my supervisor if I can leave! I don't want my employers to think I'm a hassle because of this avm! So I let another hour go by, and I've taken a Neuontrin thinking I'll be ok! Meanwhile, my hair is a big frizzy mess, so I'm feeling ugly! My co-workers can tell I'm irritable and ask me what is wrong. Bless them for even approaching me in the state I was in! Carlie and Roland laughed when I walked in their area and hissed and made a face over my pain. They are the best - they make me feel better and I appreciate their humor! I really, really, really want to try to hold out and be good and NOT disappoint my supervisor by asking to leave for the day - but I could NOT HOLD OUT ANY LONGER! There was just no way - so ... as soon as my co-worker returned from her lunch hour - I stepped into Mr. Rios office and explained my situation. He is extremely supportive and told me not to worry about what anyone else thinks, and realizes my situation and approved my leaving for the day! He added that after my fall and bleed yesterday, probably 95% of the people would have left if that had happened to them, but I stuck it out! I just wanted Mr. Rios to know that I really tried my best to make it through the day and send him a shout out for being so great about my having to leave! By the time I made it all the way across town to get my meds, I didn't get home until 3:30pm and couldn't take an oxychodone until 5pm! I took a nap when Mark got home and Mark made some wonderful comfort food for dinner! Fried chicken, mashed potatoes and gravy and brussles sprouts! Mark is the only thing that makes me feel good (ok, besides the oxy)! Mark also picks up the slack for me when I'm feeling rotten, like today! When I'm hurting, the last thing I feel like worrying about is cleaning the kitchen or doing anything I absolutely don't have to do! To boot, it's bosses day tomorrow and Mark is making cookies to take to the office! He made choc. chip, oatmeal and peanut butter cookies!
I can't say I'm pain free right now, but hopefully by tomorrow I'll be back on track! It's the worst thing letting my pain get out of control because I couldn't get my meds! The pharmacist said I could have the meds if I paid cash - $184.00! UGH! By the time we got home after trying to get my meds - we didn't get to bed until almost 2 a.m.!
I'm including a photo of my angel Mark that gets me through these rough times! This was taken @ the Mother Cabrini Shrine in Golden, CO! When I get discouraged, Marks got the encouraging words that keep me going! All of you help me get by with your prayers that give me strength and hope! We've come a long way together and have just a little longer to go! Please stay with me on this journey and let us see the end of it successfully together!
Love to all!
Tomorrow is my very last steroid after this procedure! Boo hoo!!! Oh! How could I forget to add this! I went downstairs to get the mail while I was @ work and saw my friend Felice's dad that works in Maintenance. He saw me and came over to ask how I was doing, because he heard about what happened yesterday! Yikes! What on earth is being said? I'm sure I freaked people out with the bloody mess I made after my fall - darn it all! Tomorrow has to be a better day!
Posted by Dulce at 10:10 PM
Tuesday, October 14, 2008
Greetings to all this evening!
How is everyone? Well, I've had quite a day I thought I would share! I still can't believe what happened myself! So, it all started this morning right after I got to work! My co-worker Kathy had been out last week, just as I had, and wasn't in yet this morning - and our Supervisor Mr. Jay Rios was about to leave for a meeting @ the main office - so I needed to go down the hall and leave the phones @ my desk while I did what I needed to. I was rushing, so I could get back, when I tripped over my own shoes, just for being in a hurry! I fell forward and kept hoping I could catch myself before doing too much damage! No such luck! I'm guessing when I fell forward or from the stumble, my right big toe jammed to the end of my shoe and is now hurting! I ended up bumping into the wall, then falling backwards where I hit my knee and then landed on my behind and then on my back! Luckily, @ this time of the morning, many of my co-workers were going about their morning routines and saw what had happened to me! I know there was a man down the hall that asked if I was ok, and I remember saying, "I don't know"! and moaning in pain (and shock)! The next person I remember seeing was Connie Morgan from the IT department! I know she had a very concerned look on her face and ran to grab a handful of paper towels after telling me I was bleeding! I had a feeling that would be happening! From the impact of the fall, I started bleeding from the wound on my face. For those of you new to my blog - I have an AVM (arterial venous malformation)that I have to constantly be looking after! PLEASE VISIT MY FRIEND SHALON WHITGOBS WEB SITE FOR LOTS OF GREAT MEDICAL INFORMATION ON AVMS! YOU CAN GET TO HER SITE FROM MINE, OR GO TO: http://sites.google.com/site/shalonsavm/Home. I remember my co-worker Roland asking whether I needed help getting up off the floor. People were asking me what they could do to help - I said to no one in particular, that I needed my medical bag that was in my desk area. Immediately, my co-worker Gina McMillan ran to my desk and got my 2 totebags. I got up, took the totebags and told everyone I would be ok - I just needed to get the bleeding under control by putting pressure on the wound site. I met Martha Sanchez from Risk Management that is a sweetheart! She told me not to be concerned @ all about the bloody mess on the floor - she was calling housekeeping or someone to come clean up! I want to make sure you know that the bleeding came from the impact of my fall, but not because I actually hit the area of my face or anything. I knew when I hit the floor that hard, that I would probably have a bleed from the wound area.
My co-worker Ray Rodela was very concerned and kept asking what he could do to help. He's always told me if I ever need him to cover the phones while I need to go down the hall, he is more than willing to help! Another co-worker, Kim Escamilla came to the bathroom to check on me, and make sure I didn't need any help getting the bleeding stopped. Grace Garcia, my co-worker kept asking whether I was dizzy or needed to go home. Even the tall, young man that works down the hall came to the bathroom door to ask if I was ok! Gina took over answering the phones until I could get back to my desk, thanks so much! We have a great team of people @ Court Services Supervised by Mr. Jay Rios!
I just wanted to take this time to thank all of you for being so great in my time of need! I know now that I have nothing to worry about should this have been an actual emergency! I think it was Connie Morgan that asked if I needed her to call 911. She came in to my department later in the day to check on me. Martha Sanchez really made me feel better talking to me about some of the things going on in her life medical wise. Of course I filled out a workmans comp. form for my protection - but I think I'll be fine! Thank you so much everyone on the 3rd floor that came to my rescue - I am very impressed with how everyone came together to help!!! Normally when I have a "bleed" @ work, my friend and co-worker Diana Arredondo helps me redress the area, but she was @ the main office @ a meeting, so I was on my own this morning. I probably could have put something together from my wound care bag to cover the area, but I called my husband Mark to come help! After that darned fall, I really needed some TLC and the best one for that job is my amazing husband! He was over right away and got my wound area redressed! After a couple great hugs, I was good to go! I usually keep an extra t-shirt in the bag which I needed to change into after bleeding all over what I was wearing earlier!
A few years back I fell down @ work while I was working @ the main office, and I still have one of those walking casts (boots) - I'm wearing it now and think I'll wear it a while! At least it will slow me down some! Wish I had a photo to include of my co-workers, but I'll see what I can post for now! Thanks again everyone!
Oh! I happened to have taken Rulon w/me to work today, but already I'm being asked where Saba is! For those of you who don't know - Saba is my Therapy Build a Bear! She is named after one of the techs @ the Swedish Medical Center where I have my procedures for my avm! The real Saba is from Eastern Ethiopia and a doll!
P.S. The photo I've included, was taken outside the Whole Foods Mart in Englewood, CO! My sister Celia and I had gone for one of my treatments around this time last year and it was snowing!
Posted by Dulce at 9:50 PM
Friday, October 10, 2008
Hi again Family and Friends!
Well, last night we were sleeping soundly - then about 2:30 am my moisture sensor alarm went off! I immediately sat up in bed and was touching my neck area to see if I was bleeding! It's like a firedrill when the alarm goes off! I immediately get out of bed and run to the kitchen sink, while Mark goes to get my wound care bag! Mark is the one that realized it was a FALSE ALARM! We thanked the Lord for that one! It's the heavy duty steroids I'm on right now for the swelling that causes me to sweat a bit! It just turned out that the neckline where the alarm is attached was damp from my sweat and set the alarm off! At least we know it's working, huh?
Here is another photo from our trip! This is nurse Amy and she was taking care of me in Post Op!
Just thought I'd let you know the little things that happen around here during the AVM world we live in right now! Mark went off to work this morning and is doing better w/that cold he had! My left eye is still swollen, but I can see w/it a bit! I'm sure by tomorrow it will look alot better - but see in the photo how my eye was already swelling and the left side of my top lip is swollen too!
Take Care everyone and as always, we'll keep you posted on our adventures! I plan on going to moms today to hang out and help her w/some computer stuff and she'll be happy to see Saba and Rulon!
Posted by Dulce at 9:49 AM
Thursday, October 9, 2008
Well, our adventure for our recent procedure started when we boarded the plane in Corpus Christi - before reaching our destination (Dallas) I had a bleed! Yikes! As always before one of these trips, we are going on 3 hours sleep, so I had just bumped the coffee on my tray and spilled it on us and right after that the bleed happened. Mark was able to get it all taken care of right where we sat - I told him to call the Stewardess to help! Once she saw what was happening, she took the coffee cup away from Mark and came back w/extra paper towels and wet naps!
We arrived in Denver mid-morning, picked up the car rental and headed to the hotel to change out of our clothing that had blood on it. We then took my two Build a Bears to one of their workshops for a tune-up! One of Sabas arms needed more stuffing in it, and we were changing the "recording" Celia had put in when she bought her bear originally. We decided he'll be a boy bear, but we haven't named him yet! Since he also got more stuffing (at my request), he's a big guy! So I thought of calling him Bruiser (sp?) or Rulon, after the US Wrestler that upset the Olympic Russian that had won three gold medals prior to this Olympics in Australia in 2000!
(see photo of Saba and Rulon getting some stitches open to put more stuffing in)! They both looked so great and you can't tell that they were ever opened up! Of course this service is free!
After leaving Build a Bear, we headed to Dr. Reeds Office where he makes sure my air passages are clear for that breathing tube that I need to have during the embolization! Don't forget - be looking for Dr. Reed on HGTV starting Oct. 13th @ 9pm, as they renovate Dr. Reeds Denver cottage! Dr. Reed was pleased w/how the inside of my throat passages look - so no troubles there! See photo of Shannon doing the endoscopy. Mark took a photo of us on Dr. Reeds office balcony when we first arrived.!
We picked up something for dinner @ Whole Foods and then went back to the hotel to rest! We needed to be @ Swedish Medial Center by 8am where we eventually end up in Ambulatory care to start processing me before having the embolization! Here I am w/one of the nurses in Ambul. Care - Boston, a/k/a Mary! She is always in a good mood and is always eager to help! Sue is our absolute favorite - she is hilarious and in the photo her arms are a blur! I had to get a photo in of Rick - he is the BEST Recovery Room nurse in all my hospital years! Even this time when I was put in recovery, Rick wasn't in charge of taking care of me, but came over to say hello and made sure I didn't need anything - but I needed something for pain and he got on it immediately. He is so great @ what he does and is funny too! He started telling me something that Shalon told him she would be doing on the day of my embolization. They apparently communicate on Face Book (I don't know what that is), but I asked Rick what he was talking about. I had no idea what on earth his response would be, but he said, "Oh Shalon said she is drinking a Starbucks in your honor"! Cool! Mark always brings me a Starbucks White Choc. Mocha the morning after a procedure!
Oh, to boot - there was no room @ the Inn, so I was given a choice. I could go back to the hotel, or I could stay, but would have to spend the night in Ambulatory Care! There were some poor people stuck in ICU and had to sleep there because there were no more rooms available! I was opting for going back to the hotel, but Mark was concerned that I may not be getting enough oxygen on my own and sure enough, after watching me a bit longer - Rhonda, Dr. Yakes P.A. felt I should stay overnight where they could provide the oxygen I needed. It wasn't really as bad as I thought, the only drawback being not being able to shower and get the blood out of my hair! UGH! I know I looked terrible too - my left eye was swollen shut and the left side of my upper lip was huge!
Well, I hear that Dr. Yakes used 12 cc's of alcohol during the embo - and I didn't bleed during the procedure like I did the last time. Dr. Yakes told Mark that he felt we were finally out of the Pacific Ocean and into the Great Lakes as far as my procedures go!
So Dr. Yakes came by to see me in the morning before Mark arrived, and gave me a big hug and told me he was very happy w/what he is seeing! I had an angiogram done (groin stick - eeek!), so that really shows him what 's going on w/the avm! After he left, I went over to Dr. Yakes nurse, Julie and asked if Dr. Yakes really meant what he said about seeing the light @ the end of the tunnel! She said absolutely - he was very pleased with what he saw and it wouldn't be too much longer before Dr. Yakes could do some debulking of the avm! WOW! That is great news! I don't want to get my hopes up, but it would be fantastic to get some of the mass taken out! After the debulking, is when I would have the reconstructive surgery to help me look as normal as possible! We asked about Joanna from Portugal and were told that she has already had a couple of her reconstructive surgery and is looking very well! Can't wait until I can say that about myself as well!
On this trip, Mark has been sick w/lots of coughing, so it really took it's toll on Mark! After leaving the hospital, we headed back to the hotel, I got cleaned up and then Mark wanted to change the dressing on my wound. Well, when he did that, I had a bleed! We had to wait a while to get that stopped, but so far so good @ this point! We were just happy to get home w/out any more incidents!
Oh! I had to include a photo of this nurse in Ambulatory Care named Jill - she reminds us of Rhonda Ganz, a former choir member and neighbor to Celia out on the island! The final photo will be of Saba on the plane on our way home! She got her own seat in fact, so we were all comfortable!
We thank all of you for all your love, support and prayers! I have loved writing on my blog to keep all of you updated on all our adventures in Denver on our journey to getting rid of this AVM!
Mark & Cyndi
Posted by Dulce at 8:55 PM
Thursday, October 2, 2008
This will definitely be a happier blog than last time! The dark side of the avm has passed for now ... the steroids took effect, and as you can see from the photos, no more puffiness under my left eye! We all went out to celebrate Marks 21st birthday @ Red Lobster on Sunday! Had fun visiting with Mark and we all went to Mom and Vicente house later to play one of our favorite games - Mexican Train! I finally learned how to play and we all enjoyed having some ice cream and just visiting w/each other! We had so much fun - all this helps give me strength, knowing our family bond is so great! Vicente is always so welcoming and supportive!
I've been doing fairly well - avm wise. Had a very minor bleed here and there, and the main thing has been keeping the pain under control! Guess what time it is too? Time for us to head out to CO! We will leave on Monday and return home Thursday in the early afternoon!
We still have some loose ends to wrap up before the trip - looking forward to going and getting this darned avm stabilized some more! I want the wound area to heal already! Speaking of "wounds" - I'm thinking Saba may be having a little procedure of her own! I think she needs to be "fluffed and stuffed" a little bit - her left arm tends to hang a little looser than her right! I will call the Build a Bear place(s) in CO to see who can get her worked on when we arrive on Monday! Saba must be in her best condition - she gets compliments wherever she goes! I couldn't shake this one little girl on Monday while I was @ Wal-mart! She told me how pretty Saba was and then she had to round up her whole family to point Saba out to them! What can I say, Saba takes after me! Ha, ha, ha! Ok, I'm bobble heading over here, so I need to wrap this up!
Thanks to all who come by for a visit - we'll update this on our return from CO!
Mark & Cyndi
P.S. I must also point out that even though these trips are considered "medical", it's sooo nice to get out of Corpus Christi! Mark has been working overtime lately and of course besides his regular day job, he has the full time job of taking care of me! He's an excellent wound care therapist and especially an all around support for me! This past week we lost a dear choir friend, Smitty Leonard. He and his wife Mary Ella served 18 years in choir and Mary Ella plans to continue her choir ministry. While @ the Rosary, the people in the pew in front of us turned to tell Mark what a beautiful voice he has. Mark replied by telling them he served 21 years in choir, but that @ the moment, taking care of his wife is his ministry! Is he a Godsend or what? Couldn't do this whole AVM thing without all of you out there too! Don't ever doubt what a big part all of you play in my AVM Journey!
Posted by Dulce at 6:31 PM
Wednesday, September 24, 2008
Hi Family and Friends!
Hoping all of you are doing better than I am right now! You know, most of the time when all of you see me, I'm happy (or try to be!) and making the best of my situation. Today is not one of those days! I'm not the brave person you think I am - I'm the person that is tired, very tired of dealing w/this avm! I was hoping by now the steroids I got would kick in and really make me feel better, but no ... not yet! My left eye is a little less puffy, but I have a piercing pain in my ear and the whole left side of my face hurts. I have spurts where I'm ok - but gosh, this evening I'm in pain! I had my little "I'm feeling sorry for myself cry" with Mark tonight and I called to talk to Celia. Celia can't talk right now - her voice has left her what w/her allergies and all! She is preserving her voice for an important funeral she needs to sing at soon! So, Greg and answered the phone and made me laugh - even though I did cry with him a bit. I told him, "Poor guy, first the wife and now the sister"! I felt better sharing some laughs with him ... and now I'm hoping that my feeling bad will mean that Mark will clean the kitchen tonight so I won't have to! Tee Hee! (That is the evil part of the avm talking)! Where does all our time go? Seems all I have time for now is washing my face and ironing the clothes I'll wear tomorrow!
I enjoyed the Stephenie Meyers books so much, I'm starting Twilight again, and enjoying it just as much!
Hey! Saba and I both did our good deeds today! Well, earlier, one of my co-workers came by (well she works on our floor) and was asking for donations for the Diabetes Walk that was going on soon. So I gave her some money and got a chance to invite her to view my blog and Shalons when she has a chance! She said she sees me often @ HEB! I'm hoping she'll look us up and hopefully learn more about avms! Also, on my way to have lunch with Mark, I had debated on taking Saba with me ... and opted to bring her and as I walked down the hall, one of her shoes fell off! As I bent down to pick it up, I said out loud, "Oh! My kid lost her shoe"! There was an older lady in the hallway and she looked up and said, "Oh what a pretty bear"! She asked where I got her, etc. and I told her that Saba was my therapy bear! I explained that having her around makes me feel better, so I bring her to work and other places! She said her daughter was recuperating from a hysterectomy and had not had children. I told her I was never much for having kids, but that my cats and Saba are all I need (besides Mark of course!)! She thought that the bear was a great idea and wanted to get one for her daughter! I told the lady that Saba was a nice distraction and that I had fun dressing her. She wears the preemie size from Wal-Marts baby department! See! I'm feeling better already! Just knowing that Saba and I are inspiring people!
You know, when I was talking to Greg, he was telling me that by Saturday, Davis would be able to go to Galveston and maybe look @ his stuff. From what they hear, there is mold everywhere! Greg was saying that his brother Mike Fossum had been helping his son, along with the Scouts, to get houses cleaned in Houston that had been damaged from Hurricane Ike. Mike had told him that they had gone to help one guy that had already been back living in his house a week or so and it had a LOT of bad mold everywhere! That could have been us! Bless these poor people and let us keep praying for them to recover from the damages of the hurricane!
We hear that Davis is in a nice apt. w/his roommate from Galveston and two other guys already in College Station! He started classes today, and will probably be @ College Station for the rest of the semester! Davis said his girlfriend Mackenzie will take him shopping for things for the apartment because he didn't even have sheets for the bed! Davis wasn't sure what kind of set up he would have when he got up to College Station, so he didn't know what to take! He is so well adjusted!
Ok folks! Thanks for letting me vent! I know there are a lot of people worse off than I am, so I need to pull myself out of the mood I'm in! I hear rumors that my Uncle Louie and Aunt Betty might be coming for Thanksgiving, so that makes us here all very happy! I also heard Gregs younger brother Terry will also be here! Wow, the holidays are around the corner! Happy Fall, Y'all!
P.S. Ok, ok! I can't blog and not include a photo! So here goes! I have to include a photo of my fabulous brother-in-law Greg, since he made me laugh tonight! I'm including a photo of him wearing a Farkle necklace that the winner of the game Farkle gets to wear! And ... since he doesn't win often.... just kidding! We have a running joke with Greg - he gets exasperated w/the dice when he rolls them and doesn't get the points he wants, he'll say, "Piece of junk", "I hate this game"! Course that just makes all of us laugh! I think we put aside the dice that Greg used one night that he won a game of Farkle with in a baggie w/a slip of paper that had his score and we wrote "Gregs big win" on there, showing his winning score!
The other photo is the Awesome Mark Fossum - that will be turning 21 on September 28th! I still remember the day he was born! He is holding our fat cat Midori that Markie Poo Hoo (as Aunt Cyndi has been calling him since he was a toddler) has nicknamed "the ottoman"! Midori is a walking block of fur and Markie thought she'd make a nice ottoman! Hijole! I just had to add another photo of MPH - one where you can see his beautiful face! We were @ the Fossums - probably that same night we took that other photo of Greg when we played Farkle! For those of you who may not know ... to enlarge any of these photos, just click on it for a better and larger view!
Posted by Dulce at 9:19 PM
Tuesday, September 23, 2008
Well, lets see what's new ... mmmmm, well we've been visiting w/Davis, since he is home from college since Ike had all the kids evacuating from A&M Galveston! Uncle Mark and I went to the Fossums on Friday as Mark had lost a crown and wanted Greg to resecure it! Mark took everything needed to make a couple of his delicious chicken pot pies for dinner, so we all enjoyed that! Everyone had second helpings! Mark worked on Saturday w/his City job, while I did tons of laundry and cleaned the kitchen. Mom called and wanted us to "hang out" and we ended up going out to the island again, as she wanted to give Davis some of Grandmas chicken soup! Man do these kids rate or what? Mom even took masa to make tortillas for him! Markie Poo Hoo was in San Antonio visiting friends, so we didn't see him over the weekend!
As far as avm news : the area under my left eye is very swollen and puffy! That seems to happen a couple of weeks before I go back to CO and that sometimes means I'll have a bleed! Sure enough, on Monday night I was watching TV in the living room and felt something on my neck. Got up to look in the mirror and noticed blood on my hand where I had wiped my neck. Not much - but only because Mark had previously put surgicel on the wound area and that was helping keep the bleed from being really bad! Pulled off the tegaderm and everything covering up the wound and found where the bleed was coming from! Put another piece of surgicel on there and waited a bit before wrapping the wound up. (See photo Mark took before he wrapped up the wound. The white piece on the wound is the surgicel)! I've been having a bit of a hard time controlling the pain lately, so I've been calling Rhonda Sharp (Dr. Yakes P.A.) to prescribe some steroids to help w/the swelling and pain! She didn't return my call yesterday - she had Dr. Yakes nurse, Julie write me an e-mail that she would call me today.
Well, today I had an appt. w/another wound care place @ Spohn Hospital to get a second opinion on whether the Hyperbaric Oxygen Treatment would benefit my wound. I'm lucky my Supervisor, Mr. Rios is very understanding about my avm situation and my having to go to all these appts.! Met w/Dr. Larkin and her nurse removed my wound bandages to take a look @ the wound. Dr. Larkin seemed to feel that the HBOT would not benefit my wound, but probably hurt it in the long run! Fine by me - I saw the tube they would put me in for the treatment and since I'm a bit claustrophobic, I was not looking forward to that @ all! I was just exploring my options and looking for something that might heal the wound area quicker! Dr. Larkin decided to use some different wound supplies - so instead of using ointment, and Aquacel Ag and non-adherant dressing, then mepilex and then the tegaderm: she wants to use XCell - Antimicrobial and that also has the silver like the Aquacel Ag, then the mepilex and then seal it w/the tegaderm! Dr. Larkin seems to feel this way I can change the dressing every 48 hours instead of every 24 hours like we have been doing! I have an appt. w/her Friday afternoon to look @ the wound area and see how it's doing! Mom was nice enough to pick me up @ work and go with me to my appt.! Also along for the ride was Saba! I told the Dr. that I like to bring my peeps on my appts!
Oh! Last night I finished reading Breaking Dawn! Wow! Can't wait for the movie Twilight (the first book of the Stephenie Meyers Series) to open on Nov. 21st!
Did anyone watch Dancing With The Stars last night? I was a bit disappointed! I was looking out for Kim Kardashian as I enjoy her Reality Show and thought she was ok. Susan Lucci is waaaay too thin! Yikes! She looks frail! Cloris Leechman looked healthier than Lucci! I don't have a super favorite person like in the past years when I was rooting for Kristi Yamaguchi or Apollo Ohno, so I may not tune in this season! Takes up too much time anyway!
Ok, we're heading to the grocery store now and hopefully my steroids will already be in! So, I'll be bouncing off the walls soon and lets see if my left eye gets back to normal!
Thanks for tuning in and coming in for a visit! Love to all!
Posted by Dulce at 6:34 PM
Tuesday, September 16, 2008
Wow! It seems like forever since I last blogged! I already heard about that from Shalon! She e-mailed me telling me I was MIA after the storm and I hadn't blogged either! So, even though I should iron my clothes for tomorrow ... or I would love to be in bed reading ... I love blogging even more!
Last week our family was discussing the possibility that Ike may be heading toward Corpus Christi! Mark works for the City of Corpus Christi, so he has to stay, no matter what! Mom wanted to evacuate, as did the Fossums of course because they live out on the island! Meanwhile, Davis and his roommate James evacuated Galveston probably Thursday of last week! As did my friend Dorinda from Pasadena (or as she calls it, "Stink-a-dina")! I work @ the courthouse and had told my supervisor that my family wanted to evacuate, so I put in a leave form to take Thursday off! We had heard that our office may be closed Thur./Friday - but no ... when it was all said and done, our office closed @ noon Thursday and all of Friday! Luckily (for us) Ike didn't come our way, so I had Thur., Fri., Sat. and Sunday off!
I finished my book Eclipse, and am already on page 300 or so of Breaking Dawn (see photo)! Mark calls me bobble-head, because I can't put the book down and I get so sleepy due to the meds, and my head just bobbles and I drop the book occasionally, but I don't want to stop reading it! Mark tried to slowly move the book from my hands, as I had fallen asleep w/it, but it woke me up! Had to read a bit more!
I hadn't really had much to blog about - but I know I had mentioned that Saba had a playdate weekend w/Ryan the monkey! Ryan belongs to a co-worker, Grace that will be getting married later this week! Now, Saba has a sister named Lucia! She is the Build a Bear my sister Celia made in CO - but then kinda just left Lucia behind @ Grandmas. I thought Lucia might enjoy living in our home w/another bear! Lucia was named after Josh Groban's violinist! Anyway - see photos of the furry kids! I take Saba w/me to work - she's my therapy bear and makes me feel good to have her around!
I've been doing so great w/no bleeds! Until .... yesterday, while @ work, I was feeling around my left ear area and some of the scab came off! (Spock isn't the only one w/weird ears - @ least my left one is)! Of course I soon saw that blood was also coming along - luckily I caught it before it even touched my polo shirt! My co-worker/friend Diana came to help me put some surgicel on the area since I couldn't see that myself too well!
Three weeks until we go to Colorado again! I always look forward to going on these trips - it means I'm one step closer to being done w/my embolizations! The other day one of the defendants that came in had a bandage over her throat area, so I was asking her about having a trache, since there is a possibility that I'll have to have one. She immediately said it was very manageable and not @ all a problem! Good to know!
Today during my work hours, I took the department deposit to the Tax Assessors Office and I hadn't been there in a while, so I was looking forward to saying hello to all the ladies who work in the area! They are all so friendly - so I'm sending a shout out to the bookkeepers @ the Tax Assessors that inquire after my health and issues! Let's congratulate Kathy who just got married in Vegas! Her new husbands name is Mark! Thanks ladies - you are part of my avm journey by keeping me in your prayers and always smiling @ me - making me feel normal!
Ok - lets hope all will remain in order w/out too many incidents/issues before I head back to see Dr. Yakes and the gang @ Swedish! Please keep my new friend Marijn from Holland in your prayers! He has an avm on his side and has been having bleeds, so he is hospitalized @ the moment! Marijn will be having surgery soon to remove the rest of his avm! Yikes!
We also pray for all the people that live in or near Galveston! Davis (see photo)(he is soooo handsome!) will have to finish his first semester @ College Station, since his college in Galveston will not be ready after all the damage from hurricane Ike!
Love to all!
Posted by Dulce at 11:44 PM
Saturday, September 6, 2008
Hi Family & Friends!
Let me begin w/something fun! I've been taking Saba in to work w/me all this week! Well, I had taken some time off, so it was really only Wed.-Friday! She makes me feel better (my therapy bear) so I like taking her to work! Anyway, Grace, one of my co-workers, has a monkey from the Build a Bear collection and she had been telling me she would bring him in for a play date w/Saba! So, Friday, Ryan the monkey came in, so he and Saba spent the day together! (see photo) Grace would tell me that if Ryan didn't behave to let her know! Her fiance Raul is one of the courts baliffs, so when I saw him in the hall, he asked how Ryan was doing? I told him Ryan was in love! Right before the end of the day, I picked Ryan up and hugged him and she asked if I would like to take him for the weekend! "Oh yes"! I was so excited that she trusted me to take care of her furry kid for the weekend! Grace and her fiance Raul had put Ryan together and dressed him so cute in some khaki shorts and polo shirt! He's wearing an Astros baseball cap, but no shoes! That's ok - Saba lent him a pair of her brown sandals!
Got up this morning w/every intention of running some errands and meeting mom for lunch. As I mentioned before, I have been hacking w/the crud that is going around. I was ironing the shorts and t-shirt I would wear on my outing, and I could just hear the wheezing in my chest. I told Mark I just had to cough that gross phlegm out and I wanted to do that while I was @ home - just in case I had a bleed. So, I hacked and was trying to get that darned crud out and I could barely breathe, so I really coughed to get it out and sure enough - I started gushing blood! In seconds the front of my tank top was covered in blood and it ran down my arm and down my body! It's as if someone threw a bucket of blood @ me - I headed to the kitchen sink w/Mark following close behind! I immediately grabbed a mirror and started taking the dressing off as Mark was grabbing a paper towel and wetting it so I would be able to put it over the area that was bleeding and apply pressure! We can't get this done fast enough it seems! Mark helped me take that wet tank top off as I kept holding pressure on the wound site. Mark tossed the tank top in the washer and soaked it. I checked my wound area a couple times, until we found it had finally stopped bleeding. Got myself cleaned up and we headed to the area where I sit and Mark redressed the wound area. So that took a chunk of time out of our morning.
Meanwhile, Mark gets a call from his supervisor @ work telling him there was an emergency and he needed to come in! Apparently the Memorial Colliseum had been broken into and since it's City property - Mark needed to go in and take care of the problem!
Mom called shortly afterward saying she was ready to run errands and go to lunch!
I met her @ JoAnns as she is buying yarn to crochet the boys each a throw! After that, we headed to Red Lobster and it was super crowded! Mom called Markie Poo Hoo to see if he wanted to join us, but got his voicemail and mom left a message. Before hanging up, she added, "if you join us for lunch, I'll buy you crab legs"! Is that a bribe or what? It worked! Markie called a few minutes later and asked whether he had time for a shower before joining us. We had a 25 minute wait, so no problemo! We were so glad Markie could join us - he is hilarious and wonderful company! He had us laughing - so quick w/the wit!
During our lunch, a couple of the wait staff came over to compliment the furry kids that were sitting on booster seats next to me! As we enjoyed our lunch, we started to hear singing coming from a nearby table full of ladies - it was the Sweet Adelines! It was so cool and they got a big round of applause from everyone in the restaurant! They were celebrating a birthday from someone in their group!
Went to moms house for a bit, Vicente was heading out to his daughter Margarets house, so mom and I had time to visit. I went over some computer stuff w/mom and not long after, Vicente was home again. I was missing Mark and decided to head home myself, so here I am!
When I write about the bleeds - it's mainly to give y'all a chance to know something about the life we are living right now. I feel bad that we don't always have time to visit w/friends, or always answer e-mails, but these bleeds take a lot out of us sometimes! We've learned how to handle these situations, but it also interrupts what might have been a typical day. I just live for the weekend when I can relax @ home w/my wonderful husband and feel "safe" knowing if anything comes up w/my avm, I can deal w/it so much easier than when something happens @ work! Ok, I know I'm selfish, because when I'm home, I love, love, love to read and that's what takes up time too! I think I mentioned that the other day I called Rhonda Sharp (PA in CO) and asked whether we could cut back on the Neurontin - the med. that was making me so drowsy! I was staggering 4 of those capsules a day, so Rhonda told me to go back to taking 2 a day for the next couple of weeks. I'm telling you this because now that I'm not so darned drowsy, I've had a chance to complete New Moon and just started reading Eclipse from the Stephenie Meyer Twilight Series! (see photo)! It's reading and relaxing that help me deal w/all the avm crap (excuse my french)! Of course I couldn't do any of this w/out the most amazing husband in the world! Mark patiently helps clean me up, cleans the wound area and redresses it better than any wound care therapist ever could! He never complains, just gives me lots of hugs and reassurance! He took the photos of Saba and Ryan and put it on the computer so I could include it in my blog! I am really blessed to have so many prayers and friends and family that care - Thank You so much!
Please include my new e-mail buddy Marijn from Holland. He is going through a lot w/his avm and will be having surgery soon. Don't want to disclose much since I don't have his permission, but prayers would be so much appreciated!
P.S. I want to thank my Aunts - Josie Sanchez and Sister J. (and my sister Celia) for all signing Shalons guestbook on her website! Thank you, it means a lot to her and to myself as well!
Posted by Dulce at 5:24 PM