I have had what I classify as more than my fair share of body trying to kill me illnesses.
When I say ‘visiable’ disabilities I mean things like a disorder which if maintained properly the ‘outside’ world would never know you have them.
I was born with part of one of my hips just not there. Over the years calacium deposits have ‘formed’ the missing part BUT there are times in which it feels as though the missing part is still absent.
This caused( or it is thought to have) over an inch differance between one leg to the other which causes a limp if I am not walking in the special way to hide it. When asked how tall I am I give the ‘average’ between the two differances IE: if I stand 5’ on the one leg but 5’2" on the other I say 5’1".
About 25 yrs ago I had a headach that literally lasted six months. I went to all sorts of Dr’s to try to find any relief but was given that pat on the head and given pain killers. As though it was ‘all in my head’. One dr orders a CAT scan but it came back ‘normal’. Little did I know then that with some testings ‘normal’ could easily have several diffrent interpertations. Normal as in nothing there, Normal as in they expected to see something and they didnt, normal as in they expected to see and did see something but couldnt determine what it was, normal as in they expected to see and did see and figured the person is aware of it, normals as in thought something maybe there and there is something that and actually inform/do something about it. The headach disappeard as fast as it appeared. no rhyme or reason for it.
After the birth of my now 23yr old son I began having ‘spells’. this began 6 weeks after his birth. the first Dr tried everything with in his ability to determine what was causing these ‘spells’. Because of the time frame he thought that maybe it was hormonal. So he put me on some med which I dont recall to level them out. this did not help. The spells continued to the point where one time one came along and I dropped my precious baby lucky for me my dad was close by and caught him before he hit the floor. ( I was staying with my parents do to dh not being home and me not able to afford housing where he was) My father insisted that I go to the closest ER right then no if and or buts about it. The Er dr listend to what was going on took very fast looksie into my eyes ( he was not in the room for more than 1 minute total) and proclaimed 'you need to go see a Neurologist." nothing more nothing less. Then walked out of the room. I am thinking to my self what a waste of my time and insurance cliam. But wanting ot know what was really going on I went back to the Dr who did hs best with what he had and got the apt set up with a neurologists.
On May 6 1987 I went to that apt had an EEG done and was dx’d with a seixure disorder and was put on meds for this. And was given another referal to a closer neurologists. he made phone calls to them to find one who was taking new pts and accepts the insurance. Closer I think was a misnomer(sp) as I had to go to another state. I was in NJ at the time and had to go to Statin Island… I dont recall where on Statin Island or the name of hte hospital the Dr worked out of. I suppose if really pushed and was in NJ and had to go there again I might be able to dust off the mental mapping and recall the way there.
Due to a transfer for dh I moved to southern Ohio. Got hooked up with a neuro there. Had scans, EEG’s etc.Yup he confirmened what the other Dr already had. 
Because of another transfer for dh we ended up in Phila. And I got hooked up with anther neuro. did testing confirmed yup seizures… ( ok Doc tell me something I dont know please)
Oh yeah I gave up riding during this time because my dr(s) thought it might not be a good idea to ride, jump, etc on a 1000lb animal…
This was 2 yrs give or take since my dx.
Out of the blue one apt the neuro asked if I had given any thought of seeing if what I have could be ‘fixed’. the scans showed something that is supposed to be non fatal as in many people live long happy lives with just seizures with no worries of anything occuring to kill them. called a hemagonomia(sp). Because I would pefer not to be on drugs for the rest of my life I said sure why not. So in to the hospitl I went for a week of testing. I had CAT, MRI, angiogram and a few other tests that I can not recall.
I was called into a room where other drs that I had met over the few days I was there and they began asking questions like with the onset of seizures what in my life had changed… And not so relivant questions wih replies of mmm ok that is good, mm wonderful and all answers given to have the person think that they were still ok for the surgery. then the biggie was asked… What is my insurance… I answered CHAMPUS ( the miliary dependants insurance prior to Tricare) then faster than I could blink all books closed the who I asume to be the big guy who makes the decissions on things like this announced ’ You are not a canidate for the surgery."… I was devestated… then a Dr whom I had seen during the few days there came and asked why was I crying… duh guy why do you think all the time I was here I was encouraged by the test results and by you guys that I was a good canidate for the surgery. Then he said well your not because 'that thing in your head is not causing your seizures… your seizures are all in your head." :eek: I looked at him and asked “Well where do you expect them to be MY big toe?”
I was discharged in record time ( taking under 30 minutes from being told to walking out the door).
It took a few days for me to get back to nromal and to call the Dr to inform him I would no longer be a pt of his that I would find someone who didnt sting his pts along and assorted other stuff…
Shortly after i went over to the NAval hospital who had 2 dr on staff one ped the other an obgyn… Went to one of the dr’s( dont recall which one he was) first who said cant help you in that dept but perhaps the CO can. So he takes me there and explaines what is going on and how I wanted to get another opinion ect. At this point I did not even think the insurance was the problem… so the CO got on his phone to Bethesda went through what was going on and told them just want another opinion on this whole thing. Bethesda was booked in neuro until the end of Aug beginning of Sept. He asked if they had anything sooner. they didnt but sugested to him to try Walter Reed. Now I had no idea what a Walter Reed was other than something that was removed from the map in a movie I had watched not so long before. BUT walter Reed was able to get me in the next week.
So I went ( this was the last week of May 1990) and was first looked at by a nero who found my eyes very intresting… Apparently there are certian type of brown flecks in blue eyes that kinda sorta indicate that the person can at some point in their life have a seizure disorder. Anyway he said stay here I want to bring in a few other Drs to talk to you and get their opinion on this thing. A ‘few’ turned out to be about 15… All of us in a tiny exam room all of them looking me over doing the hammer on knee , the point and touch, follow with eyes etc tests… By the time I walked out of there I could do all the tests in my sleep.
The Dr whom it turns out was the cheif of neuro. said stay here I will be back in a ew minutes we have to discuss something. A few minutes later he said " we would very much like to see what is going on and see if you are in need of this surgery to correct the problem. Can you come back the first week of June for a few weeks for testing?" I said sure not a problem my kid with with grandma and grampa for hte summer so I dont have any thing to interfear with this.’
Little did I knwo when I got home that night my phone would be ringing off the hook and my dad on hte line asking how fast can i get to ST Louis… When I said how bout payday he said how bout tonight? mm Dad no available uncliamed by bills $$$ right now so he paid for the ticket… My mom was in hospital and with him working all day etc he couldnt keep my son. So I flew into Mo on the last flight out of phila going there… think I arrive at 2 am… Anyway bit off topic sorry brought kid home mom doing better than her dr’s thought she should have been… arranged day care for son.
I went back to WR for 3 weeks a diffrent test m-f. At the end of it all they said yes you can or should have the surgery how bout July 12… Ok wonderful I can see life with out drugs.
Had the surgery the hemageomia(sp) turned out to be an Arterial Venus Malformation whch they believe to be the root of that headach that lasted 6mths. But finally was aggervated during child birth to fully form and cause problems. This was something I was born with…
They still used the ‘tape’ from my surgery to teach the hows and procedures of the particular type I had. Apparently the type I had occured 1 in every 20mil people with the AVMS so not so often. So attempt from my body to kill me #1 was solved.
Course I still have some minor problems cused from the surgical site due to the unavailibilty of the then new tech of a gamma or laser scalple… But at least I am alive…
Fast foward to this year. Or rather last Oct.
One day my fingers on one hand began hurting a lot. And on occasion my toes would also. I ignored it and just took asprin… Pain did not go away. So I finally drag myself to a dr he informs me that my colestoral(sp) is high… But before he does anything he want to run another test to make sure it was not a fluke. Nope colesteral is fine BUT platelets, wBC, hemocrit etc are very high so sends me off to a hemotologists…
Hemotoligists runs tests one that takes about 3 weeks for it to be run/done to rule out luekemia… TG no Luekemia But a cousin to it… Polycythemia vera… A ‘non fatal cancer’… From what I can find the people with this if after the onset of symptoms the person doesnt go in and find out what is going on and recieves the treatment for it, it ‘can’ be fatal with in 2 yrs… Pain in the digits is not one of the symptoms but rather itching after comming out of warm water like a shower, bath, pool et… I had this but figured it was the very hard water we had so ignored it… that was 1 1/2 yrs ago… So yeah my body tried to kill me again…
So now I go and have a pint of blood removed every two weeks until it reaches a certian level then hopefully will be able to streach it out further like upto 3 mths between the bloodletting…
Cant wait to see what my body throws my direction in 20 yrs to try again to kill me…:sadsmile:
From the outside I look perfectly healthy If I keep the dent in my forhead covered with hair. But on the inside I am a mess…
