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i had migraines since i was 17. all the women in the family had migraines, so i didn't think too much of it, except that it would be something i'd deal with thru menopause. then, i started getting fainting spells (or seizures). i'd be walking down the hall in my dorm in my legs would give out, i'd get dizzy (and incontinent) and find myself on the floor. this happened three or four times during finals and school trips -- so i chalked it up to stress and bad diet.
later (1993-94), i developed incredible fatigue and felt nauseated all the time -- much more than should have been associated with the migraines. along with this bout of mystery-illness i developed rashes. the generalized back pain started around this time, along with some fierce pain in the joints of my big toes (i know this sounds silly, but it was excruciating). i've always had "clunky" joints in my toes, but they'd never hurt before. also (this is weird) my eyesight went from 20/15 to 20/400 almost overnight.
around 1997-98, more joints became painful -- ankles, knees. i started to notice that i was sun-sensitive -- that being in the sun made the joints hurt and also made me nauseated. if i got a bad enough sunburn, my whole digestive system would freak out with vomiting and diarrhea. i developed a pain in the middle of my calf, that was totally weird in that it wasn't associated with a joint. there were a couple of kidney scares, where i woke up in the middle of the night in horrible pain, unable to stand up straight. i saw the doc for this and was given antibiotics. i'm sure there's more, but i'd have to dig out my journals -- i kept track of this stuff for years to see if it had any correlation to my menstrual cycle. the migraines did, but i couldn't see a correlation to any of the other stuff.
i'd go to my doctor with these disparate complaints and she'd blow each one off successively, offering me anti-depressants. i asked for glucose-tolerance tests, but after they checked the glucose in my urine, that was never done.
May 2002 -- the weekend i got REALLY sick i was on my way driving to florida from nashville. i'd made the trip more than a dozen times in the past few months as i was re-habbing a house (i was also in the midst of being really "done" with the marriage, so part of me wanted to fix the house up to live in). i got an hour into my trip and was so tired i had to stop. that was new. i called a friend in atlanta and stopped there for the night. this high school buddy is what i call a country club drinker, and offered me way too much alcohol. i was horribly sick the next day, but continued. that night i developed a pain in my back that was completely new. it was spastic and more intense than a simple strain. also i noticed that my urine was dark.
i went to an ER first thing in the morning -- 7am. they blew me off; gave me a script for vicodin and high dose ibuprofen -- but said that if the pain got worse or if i got tingling in my extremities, that i should return. about 3pm the pain was worse and my hands were tingly, so i went back.
this time the ER doc said that there was nothing he could do for me, but i protested. i said that i was scared, that i'd had back pain before, but this was different and with the dark urine i was afraid that i might have kidney trouble. then he said that he'd give me an epidural, admit me and do an MRI in the morning. i was relieved, and he was shocked. it was a surreal moment. he positioned me in the epidural chair and after prepping the needle, GOT IN FRONT of me so i could see the needle saying, "are you SURE this is what you want? it's gonna HURT!!!" i was terrified. my exact words were "i don't care if you hobble a foot right now, just address the pain in my back."
it gets weirder.
i was admitted, but no MRI was forthcoming the next day. instead a new doc came in and brusquely tried to discharge me. i was in so much pain i couldn't stand, much less hop into my little 6-speed miata and gingerly drive away. i was crying and gathering my things when the nurse came in and asked what the hell i was doing. i said i had to leave, that the doc said so. she then gave me a shot of morphine and said it was illegal for me to do anything for 6 hours and told me to get my husband down there.
so, i called him and he got on the next flight to melbourne. in the interim, a hospital social worker came in said that i had to leave, that i couldn't use the hospital as a "hotel" and gave me a list of hotels in Rockledge -- 45 minutes away from Melbourne. weird.
i started running a temperature of 103. i was sweating profusely. by the time the husband got there is was barely coherent. two days later i finally got the MRI, and we left to drive back to nashville in the miata.
when i got back i noticed i was yellow and was unable to walk due to a pain in my left leg. i couldn't put any pressure on it. i was also vomiting pretty constantly. i made an appt with my physician and had to be wheeled-in on a wheel chair... i couldn't keep my head up and was still vomiting. they did some blood work and were dismissing me again -- i was literally out the door when my doc ran up saying i had to come back, that my liver levels "were off the scale." i had hepatitis and she said it was prolly from eating sushi. so, i went home with some sort of drug to take and went back a week later when, i STILL couldn't walk, the doc thought she'd feel around on my leg and noticed some lumps. i was rushed to the hospital for ultrasound and then rushed into admittance for blood-thinning therapy. i had DVTs over my knee, all down my left leg and in my ankle. i spent another month in bed.
around august i felt better and was going to go back to florida to work on the house. as i was putting my bags in the trunk my back GAVE OUT and i felt a SPRAY of something inside my body. i went into crazy spasms right there in my driveway. luckily i had my cell phone in my pocket and called a friend and called my physical therapist who told me to come right in.
the friend took me to the PT's office and as i was walking toward her, smiling, a spasm hit and i fell, unable to get up. i was rushed to the hospital where i spent a couple of weeks. two of which were in diagnosis. they had no idea what was wrong with me. the liver problem returned. so, after MRIs, liver biopsies, bone biopsies, and all sorts of frankenstein weirdness they decided i had vertebral osteomylietis -- an infection in two of my vertebra.
i was given nafcillin and lovenox (for the blood clots). the liver panels stayed off the scale and they figured it was TOXIC hepatitis b/c of the meds -- which is a BOGUS diagnosis b/c i had the hep way before the nafcillin. so, on to IV Vancomycin. i was sent home again, but the pain and spasms got worse and i was BACK in the hospital for another month and a half. they were still trying to figure out the liver situation and my GI specialist gave me an ERCP which caused acute pancreatitis. the pancreatitis made the osteomylietis seem like a walk in the park. i wasn't "better" until christmas of that year. i went back to work January 2 b/c my husband insisted i get out of the house. i had no pain therapy at this point and was not prepared for the ongoing mess of pain that would become my life.
sitting was torture and after a few months of weeping quietly at my desk i tried to get my doctors to address it. NO ONE would. not my neuro-surg, my ortho-dude, or my primary. i was at the end of my rope when my primary's nurse *whispered* to me that i needed to see a pain specialist -- as if it's a BIG SECRET. which, i did and which was ugly and awful. the pain clinic situation is a giant scam. not once did anyone treat me as a patient... it was just about getting morphine and checking in once a month. they constantly got my scripts wrong and wouldn't listen when i said that what worked with me was robaxin for spasms, not morphine for pain. i was highly suspicious of these guys and only took the morphine as needed, which was about half of what they prescribed. still, it was better than being in constant pain.
most recently i was admitted to the hospital with off-the-scale blood pressure. systolic was around 240. i know -- it seems impossible. the funny thing is, i went in with new/horrible back pain and dark urine. again, i thought i was having a kidney situation. i usually have low blood pressure and was completely surprised by this.
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i've come to some conclusions about my situation. i think the liver problem was autoimmune hepatitis -- i had had way too much sun in the weeks preceding my illness (traveling for hours with the top down, and doing yard work). i think the rashes are significant, because they only come before i get really sick. so, that points to psoriatic arthritis. i'm not sure about the OM -- maybe that was caused by the epidural needle being contaminated when the ER doc was trying to wave me off. maybe not. it can't result from chronic UTI and the kidney pain seems to comport with that. however, the fever seems to point to sepsis which points right back to a dirty needle. the DVTs are associated with OM, so there's no lingering mystery there. the pancreatitis was from the ERCP.
the thing to remember tho, is THAT NO ONE EVER OFFERED ANY EXPLANATION. my ortho diagnosed me with discitis after the bone infection cleared, but explained it to me wrong -- saying the discitis was the result of a natural fusing process in my spine. that the discs were degenerating and eventually i'd have none and my spine would fuse.
i have a diagnosis of fibro right now, and i'm happy that someone has recognized my pain and that i'm getting treatment without having to go thru the pain clinic bullshit. but i really think it's more than fibro. i think it's autoimmune. my aunt was diagnosed with lupus. my grandmother had degenerative disc disease. seems like all the women have long histories of WEIRD complaints, and now i've got it too.
phew... that's the highlights. :)
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