I guess I have become a person who feels as though when going to the source of whatever you are looking for, that source should have definitive answers that are both helpful and get you past your situation that led you to them in the first place. When the sink is clogged and Liquid Plumber have failed along with Uncle Anthony's help, you call in a plumber and you expect him to have the knowledge and tools to clear the pipe. Imagine you had to have five different plumbers coming to the house each one with a different view on the issue, all valid points of interest but not one leads to the release of the clog. Frustrating right?
You go to have your car worked on at the dealer expecting they have the most qualified person there to handle any situation that could ever plague your car, however after three visits and that frigging check engine light still popping on, you now have a team of qualified technicians, managers and even a zone representative involved all taking educated guess, no resolution all on your time of course, and you are still no further along. Again, frustrating?
Now lets step into perspective, over 10 years you have been seen by 38 different doctors, have had every concievable test imaginable with the exception of the autopsy, which they still havent figured out how to do one and have the patient still be able to go home after the procedure is complete, you find yourself with the answer as to what the problem is but the people that are trained to deal with it can not figure out how to deal with it. Now you've entered my world. I have already been discharged by my Neurologist once he realized he was dealing with ANS/NCS, he knew right away that required him to have to actually get his hands dirty and be a doctor for a change. No more throwing perscriptions at me and stating in my chart "Depression based symptoms, psychoscematic condition very possible", now do you think he went back and dictated "Fucked up, guy was spot on, really had issues, I feel like a douchebag for allowing him to suffer and additional year under my care". So my "team" of doctors now lie with three and one leading the way. My Internal Medicine doctor is the one who overall has the final say on where and when, with the Rheumatologist and Electrophysiologist just making recommendations for review. Overall however, still no definitive answer as to what I am actually dealing with in its entirety. The RA doctor had stated that with the interference of the ANS, his findings could be a false finding and treating me for AS without actually having it is damaging to the system. So hes puzzled as to what to do and has never in his practice ever had such a severe case of ANS manipulate blood values and major organs the way that mine has so he is extremely confident a high level EDS is to blame. OH GOODY! EDS for Christmas, exactly what I wanted.
So now I have three perscriptions for blood draws, all different crap which is amazing there is no overlap and again I go to be drained of numerous viles to press forward in this almost endless journey of ANS. I try to do as much research on line as I can to see if perhaps I can lend a hand seeing as we are all guessing now, why not let me take a few shots at it? So I came across the most remote condition imaginable and if I have this bastard, I am going to crap purple guppies. There are only like 200 cases ever reported in the US because its so rare but because of where I have been exposure wise, we now have to rule it out. Its part of the autoimmune issue which lies dormant in your bone marrow. Oddly enough I had found it prior to realizing that its more common in patients that test positive for HLA-B27 so that was for sure a red flag. I was in location to contract and I had the genetic failure, so we'll see if thats hiding in there somewhere.
So being OCD and one who believes in being rather organized (which is contestable by the appearance of my room and desk) I decided to go casket shopping. Morbid you would think right? Not really when it breaks right down to it. Dysautonomia in its most mild fashion is still considered a potential risk depending on its efforts to control certain functions of the body. When it becomes progressive, or should you be lucky enough to be able to check off almost 90% of the symptoms as having had or having (still looking into menstrual craps) you will find that most of the information all leads to the fact that its a "sudden death syndrome". Now I am already NCS which based on my tilt test the doctor has indicated that due to the oddities of my system, I could easily test POTS next go around just by seeing some of the variations in my report prior to passing out. So given the fact that my parents are in their late 60's and live 1300 miles away, for them to have to deal with having to arrange a funeral god forbid, while in the state of emotion they would be in, lets face it, makes sense to start looking around. Although when I got the 17K estimate for a "fair" send off, I began to think, is it possible to be buried at sea? "I'm sorry, did you say 17K"? Yep, not a typo. So that was all good news my first stop was already more than I wanted to spend, yippie. I am considering donating my body to science and afterwards have the remains packaged and sold in central park for the pidgeons. I am going to make those bastards MAD! Mad Pidgeon epidemic, yes I think I have lost my marbles.
And so my journey is still in full swing, I am still so far from the total truth, yet so close to grasping evidence of what is actually the cause of making my life a living hell. I am divorced so can't blame her anymore, lol. I just want to know as much as I can and how it will sort of play out later down the road. My friends have already been instructed to take me down should I start howling at the moon, not going for any wild Werewolf Syndrome here. Just want things to become clear and I dont mean like spending 350.00 on glasses that I only need to "focus" because at times my brain forgets how to adjust my eyes properly. When everything is in sync, I can see 20/10 with one eye and 20/15 with the other, and both can pretty easily achieve 20/20. But, give a day where things are off a bit upstairs, I'd love to know if I hit the 20/400 club, the tv is blurry. Thats some Chris Angel shit right there that my brain is able to do!
In closing always remember that its not what you do or say that create and define who you are, its how you present it. Optomist all the way to the end baby, making jokes, planning ahead being real. If you had told me 20 years ago this would happen to me, the sad reality was my drinking was so bad back then I didnt even think I'd see my 40's so I think I have beaten death already. I plan on doing it a bunch more too, stubborn Aries. Thanks for reading.
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