Let me first say wow what a long time it has been since I've signed into my account. I guess it's a sign that I was doing better, now not so much.
Humira quit working and I am on nothing right now, due to my "birthmark" or what we thought was a birthmark. My ruemy just now noticed my oddly shaped and colored right leg. To me it has always been normal but when he thought it was something different I began to worry.
I was referred to a dermatologist to diagnose my leg. He said a lot of stuff I didn't understand, but luckily my mother was there to rephrase it all also I am not 18 yet so the joys of not being an adult.
I finally got to understand that he said I have a Vascular malformation, basically more blood vessels in my leg than my body needs. He said it wasn't cancerous but referred me to a doc that does laser removal. Crazy thing is, I don't want it removed if it isn't dangerous.
When I was 8 I wanted it removed because I was different and it looked weird, now I'm scared to lose it because it's been know as my body thermometer. (It changes colors based on the temp, purple, white and red in the cold, and white and red in the hot).
So this new information is what I got for my 17 birthday this year. Now I wait for relief.
Not so great to hear that Humira stopped working and that you may be facing the laser procedure. If vascular malformation is 100% not dangerous, is there any chance that you could wait, go back on a different biologic and then consider having the laser treatment later, when & if you're ready?
Your description of the colouration as your body thermometer made me smile because it sounds as if you've almost become quite fond of it! I have to say it doesn't look ugly to me, just different.
I hope you find a way forward that suits you very soon.
He wants to wait to see if I feel any different being off the Humira. He didn't want to start anything new until he found out what my leg was because if it had anything to do with my psa then he was going to change what meds I went on next. If the doctors don't think it absolutely needs to be removed then I won't. If they prefer it be removed I will, but it will be sad.
Sybil said:
Hi Fighter, great to hear from you again!
Not so great to hear that Humira stopped working and that you may be facing the laser procedure. If vascular malformation is 100% not dangerous, is there any chance that you could wait, go back on a different biologic and then consider having the laser treatment later, when & if you're ready?
Your description of the colouration as your body thermometer made me smile because it sounds as if you've almost become quite fond of it! I have to say it doesn't look ugly to me, just different.
I hope you find a way forward that suits you very soon.
So nice to hear from you again, Fighter, even if you’re going through some rough times. Bummer about the Humira, but I’m sure when they get this whole “birthmark” thing sorted out, you’ll be heading in the direction of feeling better.
I agree with you when you say that if the docs don’t insist, you will leave it alone. That’s a good approach, I think. But I would be asking straight up what the risks are of leaving it. You’re approaching this in the same sensible and thoughtful way that you approached your PsA treatment. Attagirl!
So what else has been happening in your life? Did the school year go OK? One thing I’ve wondered about was your London decision; did you go or give it a miss this time?
I’ve actually decided to go on the London trip. My aunt is going with me and we leave in less than a year. We also extended it from 7 days to 10.
I applied to be an early grad from high school and I graduate in December! I’m about to sign my scholarship package and room assignments for lindenwood university for the spring. Yes I will be a 17 1/2 year old college student so it’s a bit frightening but I’m working through the nervousness.
I also flew across the country all myself to see a friend, boy was that an adventure, although I hope for a more comfortable plane to London because those seats killed my back. So for the most part everything else in life is going the right direction.
Fighter, please join avmsurvivors to learn more about your vascular malformation. Laser removal may not be appropriate if it is a venous malformation or AVM. It is very important you and your parents research this condition before undergoing any kind of treatment, as improper treatment can cause chronic problems. My son had a malformation on his forehead. He is doing fine now, because we got to a great doctor with the right expertise. Dermatologists do not have sufficient expertise with these, in most cases.
