Wednesday, June 18, 2014

Drugs? New Drugs? New Diagnosis?

I wrote another blog post today which seems to be my pattern lately.  I finish at least one blog post and then decide I would like to communicate something else and it has happened again today.  I wrote a nice blog post about how shitty things were for me on a daily basis, kind of a day in the life kind of thing.  I wake up and things are shitty blah, blah, blah.  My thought process was I still have not talked about sarcoidosis lately and given and update on the drugs I am taking/have taken and the general course of the disease as of late.  You know that whole trying to help your fellow man by sharing your experience.

Today that did not feel right.  As I have discussed in the past, besides the damage my brain has taken from sarcoidosis and the drugs that I take for said sarcoidosis I also am emotionally not the smartest cookie.  I had an emotionally stunted childhood, I mean I wasn't raised in a Skinner box but in some ways that might have been preferable but anywho that is for another post.  Hopefully I have painted a picture that I am not sharpest crayon in the box when it comes to understanding people.

I have started taking a new drug (new to me) from a new rheumatologist (new to me) and it has been kicking my ass in several ways.  My brain has gone from firing on all 8 cylinders to barely coughing by on 4 (is that realistic, would an old V8 run on 4 cylinders?  I think I have done it by my brain is mush and I do not remember).  Next I feel as though instead of experiencing life on this earth under the normal gravitational force it has been tripled.  Everything has slowed down and not in good Matrix kind of way like I can dodge bullets but more in a I am animal that chews its cud and can not process data quickly enough to respond to my enviroment kind of way.


The first day I took this new drug I slept for twenty hours and now that I have been on it for a little while I am finally able to stay awake for a little while with of course the continued aid of my narcolepsy drugs that I have been taking for the past few months.  Now at this point you might be saying after four years of being sick why are you even trying a new drug?  The answer is simple, the new Doc thinks that sarcoidosis has triggered fibromyalgia and the new drug is for fibromyalgia.  For the record I think she is wrong and I think that my sarcoidosis specialist and neurologist were correct in diagnosing small fiber neuropathy with some idiopathic length dependent polyneuropathy just for kicks.
Now in true Talking Heads fashion you may be asking yourself, how did I get here or maybe more to my point why am I taking a drug for disease I do not think I have?  Desperation?  A little bit, yes I can admit that I am a little desperate.  After four years of being sick combined with the overall negative trajectory of the illness, yes I am a little desperate.  Of course you know I will bounce back and my faith in God will kick into overdrive and I will regret having sworn but not enough to go back and change the blog post but in the meantime things have been rough.

My sister just got out of the hospital, pain has been my alarm clock, and sometimes it is hard to see the horizon when you are down in a valley.  Some more stuff to make you feel sorry for me, my mom is old and lives in another state and I worry about her and I feel helpless that I can do so little to help my sister that just got out of the hospital and I have said it before but it bares saying again, I would give almost anything to give my wife a moment of peace.  I wont go on and on about my wife but she certainly has a hard row to hoe.

I have always said do not hope for anything, just do your best to enjoy what each day brings but let me just take this moment to say...I would not mind if my ass would stop sweating.  Had central AC installed and it turns out I am not hot I am loosing control of my autonomic nerves, seriously when you have goosebumps because of how cold it is but you still have swamp ass, that is no bueno.  I could use a little break.