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Posts: 319
Tired..
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wow, I cant believe I didnt find this forum before! you try to explain things to your friends and family, but for someone who's never been sick a day in their life, they can be sympathetic all they want but they never seem to "get it". it's nice to know i'm not alone.
I guess my story begins a little over four years ago in late 2004. I didnt know it at the time of course, but in hindsight I should have seen the warning signs. It was my senior year of highschool, and well for the most part.. there isnt much to tell about it. I never gave it a second thought at the time, just putting things off as getting older or growing up, but I began noticing subtle changes in my behavior. It's kinda hard to explain but like something would happen and for some reason it just felt.. different to me. things I used to love doing I just for some reason didnt seem to have my heart in it. I was a star athlete prior to my senior year and just when I went out I just.. just didnt seem to enjoy myself as much any more. It was a very odd feeling but I never thought anything of it.
Anyway, a year goes by and its my first semester in college. I'm super excited about being out on my own for the first time, maybe a little too much :) heh. It's a great first semester, meeting new people, new experiences, except a few things changed. I think it was maybe the second week of school when I began noticing that my urine had become cloudy. Much like there was some kind of thick mucous in it. I began having a fatigue unlike any other i'd ever experienced. There was a time when i skipped almost 3 days of classes and was in bed for almost 30 hours straight sleeping. I should have gone to the doctor then, but at this time in my life, I didnt get sick. I never went to doctors. anyways, a month goes by and a very strange thing happens. all of a sudden one day my jaw locks up. i had to take a hand and force it open. it was so sore i couldnt eat for almost a week. sadly this became more frequent until eventually, it stayed locked. got easier to open of course but would pop every time i opened my mouth. but these physical symptoms meant nothing to me. i blew them off for poor nutrition, stress, or any other bogus thing i could come up with. there was however, one thing that was a little alarming. that odd feeling i had before, was becoming stronger, i'd go out to football games, out with my friends, and yeah i'd have fun but for some reason, it was just like.. i wasnt enjoying things like i was supposed to. but nonetheless, i was making good grades, chasin after a special girl ;) and all around my life itself was going where i wanted it to. but didnt.. feel right.
my next semester came around, got myself a new girlfriend :) was being more social, making friends, my grades were better. things were going great despite the odd feelings residing in the back of my mind, and strange physical symptoms. that is of course until march 1st 2006. i awoke to my first nightmare in almost ten years. it was startling, strange but all in all insignificant. i blew it off as just a dream, and went on with my day.
Up to this point everything that has happened has had no effect on my life, and honestly paid no attention to any of it. but 3 days after that nightmare something happened that has changed the course of my entire life. everything is different and will never, ever be the same. that odd feeling in the back of my mind hit me like a freaking train. I was walking to my class, listening to music and instantly felt sick to my stomach. it wasnt nausea or any kind of physical pain. the only way to describe it is like every single person I have ever, or ever would love had just died. like anything that had ever mattered to me was taken away. That's what this feeling felt like. it wasn't physical, it was emotional and mental. it hit me for about 30 seconds, in which time i fell to my knees and almost through up, then went away just as quickly. it was startling, and noticably shook me. ten minutes later it hit me again, twice as intense except this time, it did not go away. this was march 4th 2006, and to date has yet to subside even for a moment.
I remember crying myself to sleep that night. but what was extremely unusual about this was that, nothing happened. no one died, no one broke up with me, i wasnt failing, everything was fine. over the next few months, I dedicated myself to figuring out what was bothering me. obviously still had no idea I could be ill so was picking apart all aspects of my life. I've never spiraled so quickly into a state of confusion and depression in my entire life. I'd try so hard figure things out, it was consuming me. it was my parents who were so alarmed with my abrupt personality change that forced me to go see a doctor. it would take me almost 6 months until i finally agreed to go, convinced i could figure it out on my own. the next day they called me up telling me my calcium levels were way above normal. I remember thinking to myself, "high calcium? what does that mean" i remember googling it and coming back with hyperparathyroidism, I checked the symptoms list and it read: 1) Confusion, 2) Depression, 3) Irrational mood and behavior, 4) headaches.... it was like looking into a mirror. I was shocked. The thought of something being wrong with me was extremely hard to grasp.
that was 2 years ago. since then I have been to 15 different doctors, endocrinologists, internal medicine, neurologist, urologist, gastroenterologists, pyschiatrists.. my doctors office has become my second home. i've had progression of symptoms to include dark brown and red urine (NO blood), extreme abdominal pain and an odd feeling that i'm not digesting foods properly. recently i've began to notice my hand shaking and twitching has become more frequent. about a year ago they did find a birth defect called Dandy-Walker Syndrome with acquired hydrocephalus. i underwent brain surgery to place a shunt to relieve the pressure (my brain had swelled to 5 times its normal size). unfortuntely it appears this was asymptomatic, and it has made no difference to my well being.
every day seems to be an endless and exhaustive search for an answer. I find myself just making up reasons that I feel bad just to have something to think about and give myself some sort of hope. (anti depressants seem to have no effect on me). that person i used to be was gone a very long time ago. I find it hard to explain to people whats wrong, and it's even harder for people to understand. i've gone through phases of denial, blaming god, resuming the fight, giving up, and even wishing I were dead just so the pain would stop.
wow, i just realized i've been thinking about and writting this for like 3 hours, i'm sorry this is so long.
i guess you reach a point where you wonder, will a light ever show me the way? if it'll ever end. i try to be optimistic, try to look at what i'm "supposed" to learn from all this, and honestly, when it's all over it'll probably be the best thing that ever happened to me, being how hard i looked at my life. but. i dont know.. it has to end first. i'm just tired of not knowing whats wrong. i dont feel normal. and not knowing has driven me half insane like a thousand times.
my medical bills.. (horray for insurance! :P )
15 doctors..
Blood tests: $13000 +
Surgeries: $140000
MRI's: $15000
Diagnosis: Priceless...
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If you have to ask, you are not ready to know -
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