Start at "Day 1. Drugs and Boobas" or you're going to be very confused.
Got an email response from Andy Barwick today. I stumbled across his website www.andybarwick.com last week when I was on the ABDA's (American Behcet's Disease Association) Facebook. He has an aggressive form of Behcet's and posted some information about the National Institute of Health on ABDA's Facebook. They are accepting patients for Behcet's Protocol. He is a patient there and is undergoing an experimental form of treatment.
I have been in correspondence with 3 other people with Behcet's, besides Andy. They all have the Behcet's symptoms, genital and oral ulcers, aching joints, uveitis, rash, fatigue etc. These things are horrible and painful. My pulmonary symptom is painless but potentially fatal. I haven't continued much discussion with the 3 people I talked to before because I don't want to scare them and I can't relate to them. This is wrong of me, I'm being a coward. Andy is much sicker then I am and he responded to me with a fighting hope. It's all the same nasty disease just in a different fashion. He has given his body over to the NIH in order to help me and others like me. This makes him my new Hero. Thank you Andy!
Today:
Got my films in the mail. Went rollerblading this morning but I'm feeling like I might get sick if I don't take it easy for a couple days so no more exercising till Yoga on Thursday. Haven't heard from my dr's office so I'm guessing that my liver is happy. I'm looking forward to my Pulmonary apt on Friday. Per Andy's advice I will be talking with a therapist on a regular basis too.
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Hey Annie. I'm glad your taking care of yourself. Your an awesome friend
ReplyDeleteThanks, you're a good friend too. Missing you lately...we'll do lunch next week!
ReplyDeleteI am currently in limbo diagnosis of neuro behcet's. They know I have it now I'm just waiting to find out the severity and current damages. Its so hard because my doctors know little about common behcet's let alone neuro. I recently have been having episodes of heart rythum like a humming bird. So I saw this post and was curious as to the danger lingering in my future. Any comments would be very appreciated. I'm only 34 and I am a mother to two children who need me to be here as long as I can. Thanks in advance.
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