The purpose of this web page is so I don't have to tell this story any more. It took a while, but I think I am finally able to let go.

thnx, Matt 4/29/2000

Coming at it sideways, I wrote a song about this time: same not same.

Matt 3/2010

The Beginning

On the evening of May 3rd, 1999, I started to feel really terrible. The symptoms were what generally happens when I got a really high fever: intense headache, high temperature, achy muscles, etc. The onset was very fast. Some co-workers and I went out to celebrate shipping the beta of a project that had taken quite some time to get out the door; I went into the movie theatre feeling fine, and came out feeling like crap.

After a few days of staying home and being unable to break the fever, I decided to go to the emergency room on Friday (May 7th). I'm not really a hypochondriac or anything; but I'm not dumb and think I'm invincible, either. At that point, the headaches had gotten so intense that when I "woke up", I couldn't move. I could kind of lift my arms a little, but when I tried to roll over or get up, I would invariably fall down and drift back to "sleep". This had actually happened before a few times when I had high fevers, but it was still pretty scary.

When my friend strick and I got into the emergency room, they thought from the symptoms that I might have meningitis, and performed a spinal tap to get some spinal fluid for testing. This scared the living hell out of me, and I demanded I be doped up in some way. I think they gave me a mild valium, I really don't remember. Strick was there the whole time, even during the spinal tap. You have to curl up in a ball so that your vertabrae are all spaced out so they can get the fluid out without hitting bone. Strick had to hold me in that position, because I was far too out of it from the valium to do much. (Hey, I'm a lightweight.) My admitting doctor was Sheila Humphries, a very nice asian woman.

After that, I was told I'd have to spend the night in the hospital with my back perfectly straight in bed so that the hole they poked in my spine wouldn't reopen. I still had a very high fever, and my head hurt quite a bit. I'm not sure how to describe the feeling; it was like I had brain surgery and someone left a sponge in my head. My mom offered to fly out to be with me, but I declined. If it got more serious and too much for my friends and I to deal with, I would give her tell her to come out. That is, in fact, what ended up happening.

I was put on an IV and some painkillers for a few days while they tried to break my fever. At this time, I caught pneumonia. One of the worst times in the hospital was the night the pneumonia started setting in. I had acquired a tickle in my throat, so I was coughing when I took shallow breaths. I had to take shallow breaths because pneumonia was setting in; I didn't know it was pneumonia at the time, and neither did the nurses. This was past midnight on.. Sunday I think. I would try and breath slowly enough not to cough, because when I coughed, it made my brain hurt so much that I cried. But, because of the pneumonia I had to take sharp, shallow breaths in order to get enough oxygen. It was a nightmare. The nurses were no help whatsoever. It wasn't until my doctor came the next morning that it was realised my left lung was totally filled with fluid. After the x-ray, the doctor said it was "bi-lateral penumonia". (I think.) At this point, I was rushed to TCU (Transitional Care Unit).

Speaking of the doctor, Sheila is married to this guy named Simon. They basically played tag-team, though after a while pretty much only Simon was dealing with me. They were really cool, and I still go to them. Also during this time, my roommate, Robey, and then boyfriend, Mike, were spending a decent amount of time with me in the hospital, along with Strick. If it weren't for my friends being with me, I honestly don't think I would have recovered as quickly as I did. Of course, I didn't know at the time that this was just the tip of the iceberg.

It was also at this point that my doctor told me that this type of pneumonia is sometimes seen in people who have been recently infected with HIV. He had done a lot of volunteer work with HIV/AIDS patients, and he was speaking very sincerely from experience. I really didn't know what to think, I was already dealing with having pneumonia, and I think I just rejected the whole idea. We had a series of five blood tests done (for accuracy's sake). I had chosen to only tell my roommate and strick about this new development, as I didn't want to worry anybody until I knew for sure what was going on. Before the results came back (it took a full 24 hours), I started to really evaluate how this would affect me and what I would have to do. I knew my friends would stand by me and help me deal, the only thing that really worried me was how I would tell my mom. I didn't put myself into any situations where I would be at risk in acquiring HIV, but becoming infected with it pretty much supplies a definitive conclusion that I was involved in activities that put me at risk. I was really worried I had let my friends and blood relatives down by not taking proper care of myself, even though I couldn't think of anything I had done "wrong". All 5 tests came out negative. When I got confirmation, I went ahead and told people what had happened.

So, back in TCU. I was hooked up to at least 5 different instruments at any given time: one was this thing that fit on my finger and measured my blood-oxygen, another were these sticky things all over my body that measured my heart functions, I had oxygen coming in through my nose, and I forget what else. I actually never had a catheter through this whole thing, they gave me a jug to pee in. One day I was talking on the phone and laughed really hard, the doctor freaked out and thought I had a heart arrhythmia. That got me a nifty encephalo cardiogram which showed nothing and added a nice chunk to my overall hospital bill.

They were really befuddled as to what was going on, because blood tests weren't showing an elevated white blood cell count (indicating the fighting of an infection). Because HIV had been eliminated, they knew it wasn't an immune system deficiency. Well, at least not one that were farmiliar with. To gather more forensics to help them figure it out, I underwent a broncoscopy, also known as a lung biopsy. This is quite possibly the worst thing I have ever had done to me in a hospital. Do you remember from grade school, the saying that went "up your nose with a rubber hose"? That's effectively what they do: they dope you up, but you still have to respond to direction, so you're not totally knocked out; then they stick q-tips with this goop up your nose that numbs your whole nasal cavity; then they stick a little hose up your nose, which goes down your throat and into your lungs to gather a tissue sample. I was told that only about ten percent of people have a bad reaction to it, and I was in that ten percent. While they were pulling out, I had a reaction and started coughing more violently than I had ever done anything before. Bits of blood and tissue were on my face, I could feel it. But, I wasn't really in any shape to deal with it. Back in my hospital room, I slept as long as I could; I really felt horrible.

When my blood-oxygen level was getting back up to normal, they moved my into this big room that had eight to ten other patients in it. It seems that TCU is generally for very old people, and that's what I was surrounded by. I slept a lot during the day (moreso than I usually do) and was up late at night, as that was when my "breathing" therapy happened. They had this thing that looked like a bong from outer space that I started calling the "alien bong of wisdom", and they ran oxygen thru some weird bubbling stuff that was supposed to help me breathe better. I wasn't kidding about that bong thing, it really did work exactly like one. Being up late at night, I got to see "Jerry Springer" amd "Mother Love". This was the Jerry Springer stuff they wouldn't show during the day, so you can imagine what that was like. I actually like Mother Love, especially the woman who "played" Mother Love. She ruled.

By Wednesday (May 12th), things were going well enough that they said they would discharge me the next day. I was ecstatic. Being in the hospital was definitely giving me cabin fever. Sure enough, I was discharged on Thursday (May 13th) and Robey took me home. I was feeling pretty okay, except my muscles were a little sore; I figured it was from being in bed for a week.

Friday night I went with my friend Tom to newhackcity, a hacker clubhouse in San Francisco. It was at this time I noticed my muscles, specifically in my legs were really sore and weak. Once I was up, I could walk with only minimal pain, but when I sat down, getting back up was an exercise. The next night, some friends threw a little party for me and called it the "matt's not dead party". It was on Saturday I first noticed my pee was getting kind of dark. Kinda brownish, it looked. I didn't take into account the toilet water was diluting it, so I didn't worry about it too much. Figured my body was expelling toxins of some sort. Mike came over in the afternoon and hung out, and we played dress up before heading over to the party. I wore white plastic pants and a tshirt, and Mike wore a rubber shirt and some ripped jeans. It was that night I noticed that my shoulder muscles, the "rotaters" would going as goofy as my legs were. Massaging seemed to help a little bit, but not really. At the party, strick played the movie Spinal Tap as a sort of a sick joke. I wasn't feeling well, so I ended up crashing at strick's house instead of going home. The next day, my muscles were feeling worse I knew something was definitely wrong, but wasn't sure what to do. I mean, what could possibly be wrong? Strick took me to the YMCA to soak in the hot tub; it felt better for about 15-20 minutes, and then it was back in full effect. I decided to would go into the doctor's office the very next day (Monday, May 17th).

It Starts

I called the doctor's office in the morning (on Monday, May 17th), and made an appointment for later that afternoon. I went in, told him about the muscles hurting and the dark pee, and he told me to pee into a cup. I went into the bathroom and filled the cup, and was kind of confused. When I held the cup of pee up to the light, I couldn't see through it. It literally looked like a cup of Coke. I think I was so freaked out that I just ignored the situation. I walked out of the bathroom and asked him where I should put the cup. He was looking down at some papers, and said "just put it over..", and he looked up and said "oh my god." This is something you never want to hear your doctor say when he gets first sight of any of your bodily fluids: "oh my god."

He immediately got on the phone to the hospital and told a pathologist what the situation was. He said he would get the sample to the hospital, and that he would call me. We went back to strick's and prepared for headroom, the monday nite geek/movie session. Strick had gone out and gotten some heating pads in the hopes of making my muscles feel better. It kind of worked. Ross and Ross's dad were there, and Robey had just shown up when Simon (my doctor) called. (I found out later he had called my parent's house in illinois and talked to my sister in order to get strick's phone number.) He told me that "[my] blood tests were a total disaster" and I "need to get to the hospital as soon as possible". Talk about putting a damper on my spirits. I called my mom, and said "Guess what? You're coming to california." I finished eating, and robey took me to the hospital, along with strick.

When we got to the emergency room, Simon had told me to request a specific doctor as he could not be there himself. When the admitting nurse was taking my blood pressure and whatnot, I asked her if the computer said what happened on my blood test. She took a look, and said the infamous three letters that I would hear countless times over the next few weeks: CPK. (No, not California Pizza Kitchen.) My CPK count was way, way, way up. WAY up. I was admitted, they had me pee in a cup for a sample, hooked me up to an IV of anti-biotics, and took me to a room. I still had barely any idea what was going on, I was pretty frightened; somehow I managed to get to sleep.

In the morning, things were explained to me a little better. For some reason, my muscles were breaking down and being expelled through my kidneys. I was given an IV of sodium-something that would help keep my kidneys clear. My doctor told me if I had waited one more day, my kidneys would have failed. (Kidneys apparantly weren't meant to have a steady stream of dead muscle tissue passing through them for days on end.) This is where things get kind of blurry for me. There were so many specialists and so many tests and so many theories that I can't even keep them straight. I also think I tried to detach myself from the situation initially, so I just blocked out a lot of what went on from my memory. My muscles just got worse and worse, to the point where walking, or even turning over in bed was nearly impossible. My mom was there at this point to stay with me and help me get through this, as well as all my friends. I honestly don't think I would have healed as quickly as I did without everyone's love and support. Thanks, everyone.

Seemingly randomly, they tried a cortical steroid called prednizone to try and treat what they thought might be the problem. The guess at this time was I had an autoimmune disease that had never been seen before and predizone was used to treat some autoimmune diseases. The CPK count in a normal person's bloodstream is generally less than 100, whereas mine was at around 300,000. After the first few days of prednizone treatment, it HALVED. This was amazing, considering it hadn't gone down for awhile at that point. I was happier than a pig in shit. After a week, they stopped the prednizone treatments because they thought it was dangerous to use prednizone as a treatment when they didn't know what they were treating. I can sort of see that logic. Sort of. When they stopped, the CPK count was down to 28,000 or so. It fluxuated between 26,000 and 32,000.

During this whole time, blood was taken nearly every morning for the daily blood test to see if the CPK was going up or down. When they took me off the prednizone, the count stayed the same, which confused everyone even more. At this point, I was going through physical therapy. I can't describe how weird it is to have your muscles be useless, and be unable to walk down a hallway, or up stairs, without help. I was restricted to a wheel chair for the mostpart, and we got them to let my mom and/or strick take me outside a few times. I had to be on the IV the whole time to keep my kidneys from failing, so this big IV stand and machine had to come with us. After a while, I really couldn't deal with being in the hospital any more. I was starting to lose "it". What helped make me sane was that I was able to get my own hospital room which was sort of a pretend dorm room/office. Strick had loaned me his laptop, which I had dialled into a local ISP almost all the time. Because no one could phone me, he also got me a cel phone (which I still have, thanks strick). People had brought me in soda, which the nurses were cool with so long as I kept track of how many I drank. They kept track of waht they called "Is and Os", which was how much liquid I drank (input) and how much came out (output). I was still peeing in a jug, and from time to time, they made me save up all the pee for 24 hours. When they do this (for the purpose of some special test), they put up signs to alert nurses not to empty the pee jug into the toilet. The signs say "24 hour urine in progress". No joke. I nicked one and put it up on the door to my bathroom at home.

They did a muscle biopsy to try and figure out what was happrning in my muscles. The muscle biopsy involved doping me up (at my request, I was fairly upset/nervous), slicing open my upper leg, and taking out some muscle tissue. The pathologists saw a lot of interesting things, none of which they could figure out. This is about when one of the doctors told me I was "the pathology case of the year, at least". More questions, and still no answers. Some of the symptoms were conflicting with known diseases, and prednizone should not have helped in any of the cases. After a while, they were trying desparately to find a scapegoat and I had to take an HIV test again. My doctor protested it, but one of the senior doctors said it had to be done anyways. It, of course, also came out negative.

I was really going nuts, and wanted to go home. I was looking at arranging for home nursing, since my condition wasn't improving. I demanded to be put back on prednizone, which they did, unwillingly. CPK started to go back down again, which I bet my doctor it would. It was during this time they allowed me out of the hospital for 6-8 hours at a time. I went to a 2600 meeting, and to see Star Wars (the new one). All the people at 2600 signed a t-shirt for me that said "FREE MAAT" on it; it really lifted my spirits. I didn't really like the previous Star Wars films, and the same goes for the new one. It was pretty, though. I also went to In & Out Burger with my friend Nevin for an hour. The nurses let me get away with a lot, they were all great for the most part.

The End

On prednizone, my CPK got to below 1,000 (still ten times the normal amount) and I was released. I had to go for weekly blood tests and was on a high dosage of prednizone for another 3 months. Prednizone is the worst drug/medicine I have ever taken in my life. It completely screwed up every aspect of my health (mental, weight, etc) and I am still dealing with the side-effects of it 8 months after being off of it. The mystery disease seemed to just go away on it's own while the prednizone kept my muscles from breaking down further. At this point, I'm almost back to the strength I was before I got sick, but I haven't regained my range of motion/flexibility fully.

There still isn't a real diagnosis, and there is no guarantee it won't come back. The whole experience has made me appreciate things a bit more, though. As my mom said, "it builds character". Hopefully, I won't have to piss out my muscles for a month again to build any more character.

Update 2001: They think it may have been polymyositis. See my vitamins page for some suggestions on supplements that helped my body recover.