- CASE FILE
Life altering, painfully debilitating, unsightly, and uncontrollable symptoms causing over 50 hospitalizations since 2011.Desperate for help
ABOUT THIS CASE FILE
• I am a 35 year old single mom who can barely take care of myself let alone my son. Although I look like a hideous leper who is forced to wear long sleeves even in the summer and endure strangers staring and making comments, the physical appearance of myself is the least of my concerns. As noted before, my skin is changing and not for the better. It’s becoming more painful and limiting my ability to perform certain tasks, including ones needed for daily living. My flares are becoming longer and spreading farther on my body. Sadly, because my case is so complex I have experienced many doctors brushing me off and not wanting to try to truly help me. They don't want to put in any additional work or time to do research on what might be going on. They're so trained to diagnose and treat common diseases that they "look for the horse instead of the unicorn". Plus being a woman in my late 20's early 30's has also negatively impacted my care because many medical professionals assume that when a diagnostic test doesn't give them any answers then it must be "all in my head" or that I'm drug seeking. I have seen multiple doctors in multiple specialties. They concluded that I had Behcet’s Disease. However doctors currently aren’t convinced that is what I indeed have since they can’t get my flares under control. We have tried multiple medicines, along with changing the dose and combination to no avail. The only things that some what help is monthly IVIG infusions, high dose IV steroids, IV Benadryl (IV pain control as well, but that’s secondary). Since January 2019 I have been hospitalized 6 times (each time for at least 5 days) and since the start of this all in 2011 I have hospitalized well over 50 times. I am currently on 20 pills a day along with monthly infusions, every 6 month infusions, daily injection, and as need medications. Between toxic medications, side effects of the medications(I have multiple complications from being on steroids for over 8 years at varying doses, but never off of them), the progressive severity, and the unknown, I am very afraid that this will lead me to an early grave. I would love MY life back, but at this point I just want A life. There’s a line in a song by Vampire Weekend that sums it up perfectly…”I don’t want to live like this, but I don’t want to die". Please help me. You’re help would be better than winning the lotto in my opinion.