Hey Y'all! How are you? I want so much for everyone to know about the avm world and what part all of you play in it - so that is what this blog entry is about! I'll try and keep it simple, ok? This avm is hard enough for me to understand and I'm living it - I can't expect you to "get it", although many of you really do! Mark lives it every day with me and I know my sister Celia really gets it too! As you know, "bleeds" can result in what looks like a CSI crime scene sometimes. Keep in mind that other avm patients may be having a different experience depending on the severity of their avm.
I was @ Wal-Greens the other day, filling a prescription, when a boy of about 9 years old came around the corner, saw me and went, "Eewwww"!!!!! I could tell he thought my appearance was maybe a Halloween thing. I heard his mom call out his name and I told him it was not polite to stare! This isn't the first time I've experienced this - several years ago, another kid @ a Halloween carnival looked @ me and I could tell he thought my face was not what I really looked like everyday - he thought it was part of my "costume". Mark and I ran into one of my lovely co-workers, Griselda several weeks ago @ Petsmart and she was with her son, about the same age as the two boys I had just told you about. Her son never flinched, hid behind his mom or stared - very well mannered and excited to tell us about a school project he was working on! Kuddos to parents that are raising well adjusted kids! You should see Griselda too - she would have every reason to be vain - has long straight hair, very pretty and dresses well - she is the classic example of beauty is as beauty does - she is very down to earth and is always willing to listen and to help in any way she can! Sadly, I've had adults blurt out, "what happened to your face"?! Yikes! I'd never ask someone, "hey, how'd you get stuck in the wheelchair, or how'd you lose the limb"? I don't want people feeling sorry for me either - just treat avm-ers as you would anyone else! I've been impressed every morning as I get to the front door @ work @ the Nueces County Probation Office, that one of the defendants in the lobby stands up to hold the door open for me as I pull along my "what if" bag as Mark calls it. It's a cart full of anything that will make me more comfortable while I'm @ work. From meds, to snacks and books, magazines, etc.
I've had discussions with some cancer survivors (co-workers) that truly are grateful and appreciative of their lives - puts things in perspective and they have a very positive outlook after what they've been through! On the flip side, I am shocked to know someone having suffered a medical setback and appear not to have learned from their experience! Same arrogance, false appearances and superficiality. Wow. Guess we all handle things differently.
As many bleeds as I've had, you'd think I'd get a handle on it. Seems to throw me off physically, psychologically for a few days. Takes a while for me to process the experience before being able to relax a bit. I can't help but feel sad and upset several days after a bleed. Can't help but feel like there is impending doom - just waiting for the next bleed. I'm afraid to go anywhere, I want to stay home where I have what I need to try and stop the bleed. I worry about what I can eat - although a bleed can happen @ any time whether I'm eating or not. I can't eat just anything either, due to some dental problems - it's easier for me to have something fairly soft and not something really crunchy or hard to chew. I want this overwith already!!!!
Mark is so great @ soaking my clothes and getting all the blood off of them. I never can get them as clean as he does! Celia has insisted my embolizations be no more than 5 weeks apart, as this is the only way this nightmare will be over - is to keep after it until we beat this!
I give so much credit to our maternal grandparents that set a foundation for our family of faith, love and prayer - otherwise I would not be able to deal with this hardship. Family and friends I appreciate your prayer and love! My Primary Care Physician, Dr. G. Boynton - I sure keep him busy as I've needed many blood transfusions. A doctor can go his whole practice and not see anyone like me w/an avm. Wound care techs, patient coordinators and nurses - you are awesome and so appreciated by me! Keep up your fantastic outlook - you are in the right line of work! If you are out there with an avm - you need to see Dr. Yakes! He has a fantastic bedside manner and knows how to help you! All Dr. Yakes P.A.'s, Kelly, Mandi and Andie are always so caring and professional! Putting the patient first and always there for us! I started with P.A. Dave, Rhonda and Eric and nurse Julie Labadie - all so fabulous!!!
Thank you Lord for surrounding me with the angels that help me get through each day and for giving me the strength to handle what I wish you wouldn't trust me so much with! I love my life with Mark and our two furry kids Hanz and Bella! They love me unconditionally and keep my spirits up! I need to deal with knowing that spontaneous bleeds will be inevitable until there is no trace of the avm left! I'll do my best not to whine about it and throw myself into the things I love most that make me happy! Love reading, Twilight, the #1 comedy The Big Bang Theory, country music and hearing from friends! Thank you! My co-workers go above and beyond always offering their help and treat me so well - especially my friend Diana - she's brave enough to venture out to have lunch with me knowing I could have a bleed (and have) while I'm out w/her!
Our families help us get to Denver and to maintain our home! Their generosity is enormous and they help us function in a somewhat normal manner! From helping us move out of storage rooms to fixing a broken window. Celia has come over with her cleaning lady and dusted, cleaned out our fridge and swept and cleaned the kitchen! My angel of a brother-in-law Greg (DDS) will get me back on track, along with my nephew Mark that makes beautiful porcelain crowns/teeth that I'll need replaced eventually! As I've mentioned before, Celia is a dental hygenist and does her best to maintain my teeth for now! Because of the avm, I'm limited to how wide I can open my mouth, so It's hard to get in there to brush and I worry about my breath and my teeth rotting! UGH!
I want to mention my brother-in-law Jim and his wife Shelley again - they support us during this time and help Mark keep his spirits up too! Jim comes into town often from Rockport and takes Mark out for lunch and keeps in touch often over the phone! My in-laws Doris and George and other family members keep me in their prayers and this helps so much!
I've had a trache for a couple of years now so that I can be intubated for my procedures and I'll have that until the avm is completely gone. Unfortunately I have some partial paralysis on the left side of my face. Hopefully there won't be any more before this is all over!
I'm always being asked whether Dr. Yakes is really helping me and are these treatments really working? Celia found Dr. Yakes on the internet and I would be bleeding out of control without his help! Since my avm is facial, it is extremely complicated and time consuming! Patients with an avm on their arm or leg can have 2 treatments each visit to Swedish, but I can only have one. Healing varies as well - some patients experience swelling, some cracking skin, etc. My stubborn pseudomonous infection took months to recover from - which meant being on an IV antibiotic several times a day for a couple of months and that just zapped my strength! My family almost literally had to carry me to my doctor appts. and wound care during that time!
I miss being the kind of friend I like to be, that sends gifts and cards and shows her friends how much she cares. I miss you Dorinda, Felice, Patty and Sylvia! I just can't function like I used to right now, but I have hope that my life will return to normal in a few years! I miss being a woman in love that enjoyed Mark-a-ritas and wish I could roll on the grass with Hanz and Bella! I miss my hobbies of rubber stamping, calligraphy and cross stitching - I just don't feel up to doing much of anything. Don't know whether my left ear hearing loss is permanent and for now I sleep in a hospital bed so I can be propped up to help the facial swelling and every night I sleep with a humidifier on my trache. I also sleep with a "bed wetting alarm" that I pin on my nightshirt in case I have a bleed during the night - the alarm will vibrate and make a loud noise to wake me up!
I know all of this will be over one day. I just wanted all of you to know that it is a huge team effort that allows me to be able to function! Team Cyndi! Thank you for helping me get through this and being part of Team Cyndi!
I welcome your questions or comments any time!
Love
Cyndi
P.S. By the way, Celia and I are Team Edward. Haven't seen the new Twilight movie yet - too many people out and I don't need to be having a bleed in the middle of it all! I'll probably wait a week or so and see it w/my sister Celia and my husband Mark! He is such a great sport about my Twilight obsession! We rarely take in a movie - we'll venture out to see The Hobbit as well, but that'll be it for this year! I'll try and come back and put some photos in here, ok?
dulce@grandecom.net
schumancynthia@gmail.com
