Today I am finally optimistic for I finally have a reason to be. Earlier today we were contacted by the people studying my case at the NIH their trials haven’t begun yet with the medications I would need however due to my mother’s relentless emailing campaign with the head nurse on my case it seems we have some light at the end of this tunnel finally. Why you ask? Well today we await a phone call that will change my life, the date I am going to Johns Hopkins to be fully evaluated by their head specialists in neuromuscular and vasculitis departments.
I don’t know what exactly this means, what type of testing or procedures we might revisit but it turns out the NIH was never ignoring us the head of the vasculitis unit who it turns out would’ve sent me somewhere a while ago had he ever seen my case finally got back and is coordinating my care plan as we speak. Essentially they’re finally briefing a large team about me at Johns Hopkins and they will all know my case well by the time I arrive, when it will be I do not know unfortunately. I may miss events I’d bought my travel to such as the Cluster Buster Conference in Nashville,TN but then again who cares at this point I need to stop simply surviving each day and get back to living finally. That said it’ll be slightly disappointing but not depressing if this Johns Hopkins treatment should get in the way of any life events or holidays for me. At this point I’d gladly spend my Birthday in October at Johns Hopkins being examined and my case interpreted by an entire team of doctors. If I don’t have Churg Strauss Syndrome even better but then what do I have and lets begin treating it properly, if it is CSS let’s start clinical trials now.
Well folks I really don’t have much more information about it I just woke up to hear this information from my mother. This will likely force me to put my business and advocacy on hold at some point but I’ll stay as active as I can whilst at Johns Hopkins! I promise if I cannot type I will give health updates via a youtube video daily and perhaps talk about different hospital scenarios you might find yourself in and how to remain calm and entertained. I am actually ecstatic at this news I just don’t know how to handle it. My mom said she’d made an appointment for Johns Hopkins on October 8th but that we may be going sooner due to the head of the NIH vasculitis unit pushing my collaborative care date up to a sooner appointment which he apparently mentioned he’d do to my mother. So now I basically am waiting to hear back as to what I should do with my flight and hotel plans for the conference. I just hope we remembered to book travel insurance on the flights just in case!
I know this is quite a short article but once I know more about the situation I am heading into I’ll type up more on the situation. At the moment we don’t know how we’re getting there, when we’re going, or who is coming with us so things are quite confusing. What I do know and am VERY excited about is that their director of Vasculitis Dr. Philip Seo will be overseeing my case! Luckily my mother has an intermittent work leave for me so she can take off whenever is medically necessary to drive or fly to Maryland with me. I just hope my fiance can come out if I am stuck there for a while and that family will visit, perhaps my Grandma and Grandpa or my father and brother would make the trip out to come and see me if I’m there for several weeks or even months. I have absolutely no idea how long my stay would be I just hope that they can fix me! A huge thank you to the good people over at Johns Hopkins for accepting my case to their vasculitis unit and rekindling my hope to live again.