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-   -   Fairly new, hi guys! (http://birthmark.org/board/showthread.php?t=2738)

Cuety83 01-16-2008 06:40 PM

Fairly new, hi guys!
 
Hello all,
I am kind of new to this site, well I was a member faithfully for about 2 years about 5 years ago. Hank, I remember when you first became a member, wow you are such a wonderful person and offer so much support for those in need.
To all who don't know me or remember me.
I am 24 years old and was born with CVM on the right side of my body. It goes from the top of my back to my entire right leg. It's considered in the category as a port wine stain. It was first thought by doctors to be a hemagioma, then arterio venous, until the pregnancy with my son I was rightfully diagnosed with Capilary malformation, which only affects most of the superficial veins. I have to admit, there have been some tough times for me growing up, not onlt socially, but the physical pain that I have been to. During my pregnancy was when I was in pain the most. Since this affects my entire right leg, it was so painful to walk. After the pregnancy it seemed that the syptoms of pain and the random scabbing went away. Until last summer, I felt a lump on my leg, and then another one right beside it. At first, it was painful to touch, then the pain was so umbearable that It hurt to walk, it felt like my leg had so much pressure that it was going to blow up. Doctor after doctor told me thatthere was nothing they could do. I has superficial phlebitis from the vericosities in my leg. As I am getting older all these veins are starting to blow out, and they are not working anymore, causing irregular blood flow and LOTS of pain. I was so discouraged, it took three months for the blood clots to go away, and the strong woman that I am, I continued to work, limping and ALL! I am a nursing assistant, so I run back and forth A LOT. Which is probably why all this has continued to worsen over the years, I love my job, even if I had one leg, I would find a way to do it. My job is part of my life, helping people is part of my life, and without that, I am not whole. So now here I am with A port wine stain, that used to be pink, and npw the entire leg has turned purple, with vericous veins everywhere. I went to the doctors, and I said "I've had it!" Find me someone! Find anyone who can do this just make the pain go away. For all the social things I have gone through, being scared of what people would think of me, and make fun of me, this was worse, this pain was so much worse. April will be a year of the blood clots and guess what? Im having surgery!!!! ;D I am having a vein stripping sone to all of the veins that don't work anymore, and hopefully after all the healing, which is the worst part cause it doesn't heal the same I will be okay. PAIN FREE!! Now that is more important to me now than how people stared and pointed and questioned and laughed at me. I am a beautiful woman, inside and out, and im caring, giving sharing and I have a very very BIG heart. being older now has taught me a lot. Would I prefer to live without CVM? Yes, but would I be the same me? I don't know. I can relate to everyone in here about pain and rough times and social problems. People are ignorant now adays, but you know what I wear my sexy bikini on the beach and hold my head up high, because I know I am better than that. There might be more surgeries to come, im thinking I might need another one for my back. growing up, my leg was 2 1/2 inches longer than the other, even though I had surgery to fix it from getting long and evening out, Im still left with scoliosis and my hip hurts from time to time from walking, possibly they are still uneven. Well, good luck to all, you will be seeing more of me, and remember, we are special people and god made us this way for a reason, he knows we can hadle it.

hankbartenbach 02-09-2008 06:01 PM

Hi Cuety,

It has been a while.

I am sorry you are still having problems with your leg. I hope the surgery will at least make the pain go away. Congrats on having a child.
I can not wait to have kids, but I can wait until my fiancee graduates from college. That is our plan anyways. We are getting married in June 2009.

I hope everything else is going good for you, and hope to talk to you soon.

Hank


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