I feel like I’m being treated like an experiment or an animal to be tested with all sorts of hair care products. Why do you day? Well this is a life a treatment update mainly on the National INstitutes of Health reaction to my case. I feel so damn disgraced like someone literally spit in my face. Before I go into a rant let me calmly explain what happened,
We’ve been in contact with a Nurse Researcher and the head of Vasculitis at the NIH for a while now. THey’d been putting us off for weeks now until finally yesterday my mother called the doctor twice and he finally called us back. He said the NIH is a more clinical facility and that since they d clinical trials they cannot help me. Again I wondered why not right he is the head of Vasculitic research I said to myself. Then he dropped a bomb I wasn’t prepared for nor do I think was appropriate to do over the phone. The manner in which doctor’s deliver news really matters and a patient like me ought to be examined by this doctor I’ve never seen before he says that he doubt my diagnosis of Churg Strauss Syndrome by one of the most respected rheumatologists in New York, not to mention he practiced with Churg and Strauss himself so he’s likely seen more cases of CSS than this other Dr at the NIH considering it’s such a rare disease. His issues were my eosinophils didn’t increase dramatically when I failed chemo(because I was on 80mg prednisone to suppress that which my mother who had the phone explained) and then his problem was my vomiting. Now I know neurological stigma is bad but you know it’s really bad when the head of the NIH refuses to believe you’ve had such extensive GI workups with no findings and that you believe the vasculitis exacerbated the migraines and cluster headaches leading to intractable vomiting which has come back the past week or about 9 days.
My biggest issue here is why can me, my rheumatologist, and my headache specialist put all these pieces together but not this young fellow at the NIH is it his huge ego getting in the way as is the case for some doctors in prestigious positions it seems their heads swell up. I wish that weren’t so because as I’ve told you readers I need a clinical trial. And as for this not being Churg Strauss I mean come on I fit 5 out of 6 criteria the last of which only 40% of us get which is a positive skin biopsy of our lesions. Now we all know I have some form of vasculitis but why would I ever wish it was CSS? I don’t I merely am facing the facts here and from what I’ve read, seen on support groups, and from the responses I’ve gotten after showing my active rashes on CSS support groups I know it has to be CSS. Why would someone wish for that? I wouldn’t I just want to face the facts and those are if I don’t find a successful clinical trial within 15 years I face organ failure and certain death.
The other big point I want to drive home with this article is physicians and future doctors reading this remember it’s very very important as to the time and setting you tell patients news like this. He called at 11am to give me this news leaving me depressed with suicidal thoughts all day yesterday. Today I am totally fine and reflecting on that horrible experience. It’s almost as bad as the Rheumatology resident in the hospital who came to my room and told me I’d failed chemo and there was nothing more that could be done for me. He should have NEVER said that especially when it isn’t true and he did so right before bedtime in the hospital. He could’ve looked up clinical trials and quickly seems that 2-3 experimental drugs are being worked on for Churg Strauss Syndrome but they also work for epilepsy and a plethora of other disorders.I just wish these doctors that get so many years of education would act human instead of like robots sometimes. I mean my headache specialist and primary care doctor treat me well, but the other treat me exactly like a test subject and then its on to the next walking dollar sign.
I just hope this all changes soon and I think it’s really damn sad that now in my condition I have to drive or fly if I’m even cleared to all the way to Bethesda Maryland to prove I have CSS. Since I’m on drugs to suppress it he won’t find eosinophils out of range or anything and will likely conclude this is a different illness altogether. I think this is really wrong me having to re-prove 3 years of constant blood work, procedures, and testing. I told my mom they’ll have to shackle me to the chair because if he says that I’ll leap over the desk and choke him til he has been as close to death as I have. Maybe then when I let go his breathing will fell like mine on a daily basis and I can tell him there ya go that’s what just part of CSS feels like without the pain you pansy. As my Mother literally told this doctor over the phone “I though the NIH was about helping rare cases but if you’re about clinical trials you just want the right patients for the best outcomes it doesn’t matter who really needs it and who doesn’t” I could hear the doctor stumbling over his words to try and make a reply but whatever he eventually said was sadly drowned out by the truth my mother had spoken. The NIH belongs to the pharmaceutical industry and when they do happen to help a patient that needs it it’s only because you fit a list of criteria to be seen.