Guess what?

Hi Family and Friends!

Celia and I recently got back from what may be my final embolization to treat this avm!  What?  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.  So 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!

 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 not 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!

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.

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.

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.

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 loud it sounded!  Then I realized I could hear!  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.

 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!

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!

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)!

 

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, ever getting back together, like ever"! Ha, ha!

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!

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!

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!!

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!

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!

 

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!

 

I do thank you for going with me on this journey and all your love, prayer and support!  I will keep you posted!!!

Love,

Cyndi

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! 

 

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!

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 @: dulce@grandecom.net or schumancynthia@gmail.com

 

 

 

 

Did you know ....

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 ....
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!
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!

  Gregs older brother Mike Fossum is an Astronaut! 

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!

 

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!

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!

 

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.

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.

 

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!

 

 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!

 

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!!

Love,

Cyndi

dulce@grandecom.net

schumancynthia@gmail.com

 

 

January 2013 Embolization

Hi!  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!

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.

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!

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!

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.
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!

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!

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!

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!

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. 

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.

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!
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!

I told Kelly she looks like one of the actresses on the show Criminal Minds!

See all my wires from the heart monitor?  I was wearing my own jammies!

Dave Labadie and Elizabeth - both excellent and fun!

Jill is my Twilight buddy!  Super sweet and beautiful!

Here's what I look like right after the procedure!

 

 

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!

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?

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!

 

Here's some exciting news - my beautiful sister-in-law Diane is getting married next month!  We are so happy for her!

 

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!

 

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!

 

I still have people asking, "So, is the doctor in CO really helping you"?  YES!!!  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,

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!

 

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. 

 

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!

 

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!

 

Cyndi

 

As always, I welcome any questions and comments and can be reached @:

dulce@grandecom.net or schumancynthia@gmail.com  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!

Ok, I'm adding more photos just for fun!

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!

Here's Mom and Vicente laughing about something being said - during Christmas time!

Hanz, Mark and Bella!

My nephew Mark texted this photo to me the other day!  Reminded me of our Hanz!

My Mommy's home, My Mommy's home!  Bella greeting me as I get home from work!

Playing Farkle @ Mom's!

Dr. Yakes and anesthesiologist Dr. Quinn visiting w/me before I go under!

I thought this was cute!

 

 

Christmas 2012 Blog

Merry Christmas Everyone!  How are you?  We're doing ok.  Unfortunately, lately, we've been under the weather, but we might be on the upswing!
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!

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!

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!
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.
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!

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!

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!
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!
Love,

Cyndi

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!

As always, I welcome any questions or comments!  You can reach me @ dulce@grandecom.net or schumancynthia@gmail.com