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May 2, 2008

There's nothing I like better than having to get up at 6:45am for an uncomfortable medical procedure. The EEG started off fairly easy. The nurse was cool and made me feel relaxed. I was to be her oldest patient of the day (out of 2) which was nice, but made me feel sad for the children.

The vision test was first. I was allowed to wear my glasses, granted they aren't a very high prescription, but I still found it interesting. The first test was reading the standard wall chart. Even with my blurry vision, it was still 20/13. For the second round, I got to wear an eye patch. Since it was very early for me and I was up most of the night worrying about how badly it would hurt, I didn't sleep much and thus was very excited to get an eye patch, having never worn one before. Sadly, it was just to cover up one eye while the other was being tested. I had to stare at an old school computer screen and watch the changing patterns of the checkerboard (black to white and back), keeping my eye on the red dot at all times. It was incredibly tedious and the nurse kept accusing me of looking like I was about to sleep. The screen was really bright and I didn't feel the need to have my eyes outrageously open.

Next came the hearing test. In theory, this should have been the easiest one. All I had to do was raise the hand that correlated to the ear I heard the sound in. During the practice to see if it was loud enough, it was super simple. In practice, the "soothing ocean sounds" playing in one ear were reminiscent of Homer Simpson mimicking the ocean for Marge. So loud and so not relaxing. The nurse kept telling me to take a nap, but it was so hard to relax at all with the "eeeeee--ooooooooooh" of a ship steam whistle in one ear and incessant beeping in the other. Finally it came to an end and I got a break.

The third and final test was ungodly awful. I've been told by many doctors in my past that I must have a high threshold for pain. It was finally proven. I forgot to mention that the whole time I am doing this tests/having these tests done to me, I am hooked up to many monitors that are testing everything from heart rate and temperature to the speed at which my brain is intercepting sound and pain. They are hooked up to my body using electrodes and what is essentially toothpaste. But I digress, the nurse hooked a few more electrodes up to the back of my knees, spine and base of my neck. She then attached some ridiculous piece of equipment that sent shocks through my body via my ankle (some sort of laser device).

Before she began, she had to get some sort of base line, e.g. my leg had to twitch away in pain. Now I could feel all of this and it didn't feel good at all, but my leg wouldn't twitch. Finally, after about 3 minutes and a few adjustments, it jerked and we began. I had been given a xanax before she hooked me up because I was told this sucked and I needed to not think about anything while it was happening or else they couldn't get a proper read. I had been thinking about all sorts of crazy things during the other tests and didn't remember I was supposed to have a clear mind until then. What's a girl to do?

I took deep breaths and remembered that this was nowhere near the worst pain of my life. This probably wasn't even top five. Sure it sucked and I just wanted it to be over, but I wasn't vomiting from it so I knew I was ok. I was told the test would last 10 minutes. 15 minutes later the nurse stops and tells me we're done. She kept it going to continue measuring because I had such a high threshold. She said most people don't last 5 minutes. Amateurs! She said that she was impressed that I didn't cry, not even a little.

When it was all over, my Dad took me out for breakfast and I felt good knowing the last test was out of the way. I just wanted an answer whether it was curable or not.

My date with the injection nurse

April 29, 2008

My Copaxone had arrived about a week previously. It will forever be the number one item in my fridge that guests ask about. Between that and the sharps container in my bathroom and the injection chart on the front of the fridge, I field a lot of "what is that?" type of questions from people who haven't visited in a while.

The injection nurse was 15 minutes late and I grew increasingly anxious with each passing car. I really didn't want to learn how to do this and the fact that she was late just added to the "f everything factor" in my life. She wasn't what I had expected from our earlier conversation. She looked like a stereotypical 45 year-old soccer mom/Jehovah's Witness pamphlet leaver. She walked me through what the medicine allegedly does, what to do if I miss an injection and why I have to rotate sites. She then gave me my autoject and showed me how to use it. If I ever take a flight anywhere, I have to be sure to have explanations from the doctor as well as my prescription for the autoject because I guess it looks shady
"Are you ready to try?" she asked me. "Don't worry there's a dummy you get checked out on first."
Well it was now or never and I had already taken the time off of work.

The "dummy skin" was some weird type of thick polymer that was affixed over what was essentially a petri dish. I had to inject it without using the autoject. I guess she needed to see that if push came to shove I could do it manually. After I passed that test, it was on to actually giving myself my first dose. She asked if anyone else would be able/willing to give me the injections if I couldn't.
"For example, my husband gives me my shots in the back of my arms."
I didn't know she was on it to. Interesting. "I guess I'm just going to have to power through myself."
"Oh? There's no one that could help you?"
"No, not really. I live alone and I'm single. This whole situation has made that blatantly obvious."
*Note to self, you really should have gotten married or engaged before this all went down. The double sympathy stares are awful.

I was so over it at this point, having been reminded again of just how alone I actually am. I inserted the pre-filled syringe into the contraption, alcohol swabbed my left hip, removed the cap and went for it.

"You're a pro! I can't even get it that fast." Her words of encouragement lost on me.
"No offense, but I just really want this to be over. Like the whole thing not you being here."

She told me if I had any questions to call her.

Then what happened....

I should probably keep up with this more often as opposed to relying on my memory.

After I had the LP, I was scheduled for brain scans. But before this could happen, I had to have surgery for a completely unrelated issue. I had completely forgotten about the searing pains that had been keeping me awake at night and making me dry heave because, as I found, the only good thing so far about the numbness was it dulled the pain. A few days before my surgery and nearly a month since the relapse, or lapse I guess, the numbness started to ease up. I was excited at first until the pain started. Holy crap!! I'd been living with that for two months before all of this started? I forget how high my threshold for pain is sometimes.

The doctor that was performing the surgery (not a surgeon by trade, but she specializes in this sort of thing), had been in excellent communication with my neurologist, which I found surprising and awesome. She told me that there was a really huge chance that this amount of stress to my body would cause a relapse but that I should relax as much as I could and not worry about it. Luckily, the surgery was during my "if this doesn't kill me, what will?" phase and I didn't really care too much.

April Fool's

April 2, 2008

My lovely brother picked me up from work and took me, yet again, to my neurologist. The funny thing I find about his office, the neurologist, not my brother, is that the door to the building is so ungodly heavy that even non-numb people have trouble opening it. I am one of the youngest, if not the youngest patient in my doctor's current repertoire. I know this because the receptionist always makes a comment about my age. The other patients I have seen leave his office are at least 70. They usually look at me with a "she must be waiting for someone," look. Its funny to get sympathy from someone who's sight is going and relies on both a cane and the kindness of others to get around. Not so much in the funny "ha ha" way. Actually, I guess a lot of his patients would be in the same boat at 40. Its all about how it progresses.

Back to the story: I arrive for my lumbar puncture and am a bit nervous. I have no idea if this is going to hurt or if I'm going to get that terrible headache I've heard so much about. My brother waits in the lounge and sasses the receptionist as I walk the seemingly endless hallway to face my doom. The doctor informs me that he has presented me case at a conference the day before and the other doctors were quite fascinated by my super sudden progress. He said that there was no way this was would have been caused by a botched procedure and found no records for what I had done ever contributing to brain issues. He also tells me that when he first met me he was surprised that I was able to walk and talk as well as I did based off of how large the lesions were. Apparently that is a good sign that I'm not totally fucked.

I'm glad he didn't tell me how bad the lesions were when my parents were around. He must have been waiting for a time when it was just he and I and this was the first time that had ever happened. He prepped me with rubbing alcohol and all that other stuff and gave me a shot of novocaine. It didn't hurt too badly. Luckily, I was still pretty freaking numb. He gave me a second shot a bit deeper into the muscle, but it just felt really uncomfortable. Not painful, just annoying. A few seconds later he informs me that he already has a full vial of my cerebral spinal fluid and just needs two more. So far so good. After he finished, he says that this was one of the quickest puncture he's done in a long time, but it helps that I'm not arthritic. He tells me to lay down for a bit and relax. He brings my brother back and tells us both how my father scared him with his questions. He said it had been a while since he had had a father come to an appointment and was kind of caught off guard.

After about 20 minutes of laying down, he told me I needed to go back to the hospital and have yet more blood drawn to compare to the CFS. The lab tech at the hospital asked me if I was afraid of needles. He then looked at my chart and said, "lumbar puncture, I guess not." He got me on the first try, which was a miracle based off of my experience of the past few weeks. And with a crayon band-aid, I was sent on my way to await the results.

Now What?

I suppose one of the best things about having a sudden and horrifying thing like this happen is that you find out who really is there for you. I was afraid of having anyone but family members come over at first because I didn't know how hard it would be for friends to see me in this state. I have always been the strong one that even when I broken, am still able to get up and raise hell. Now, I was too tired to even try. 

I had yet another appointment with my neurologist a few days later. He told me at our last appointment that I should research the medicines he talked about (see medical swag) and decide which one I wanted to take. I tried, but it was too emotionally draining. The fact that I couldn't feel the keypad teamed with what may be wrong was too much for me. Based solely off of the side effects I heard from all of the medicines, I already had one in mind.

I brought my parents to the appointment, which is something I'm not sure I will do again in the future. My father has worked in the medical field for about 35 years, maybe 40 and medications are his thing. I figured he would be a good resource to bring because he would ask all the questions I was too shocked to do.  He ended up kind of scaring the neurologist with all of his questions. He was hell-bent on the fact that I didn't have this disease and that it was some condition that would go away that I got from a botched treatment I had a month prior. The neurologist assured him that he had never heard of such a thing, though he would research it, and that we should all act as though this was it and try and adjust to it. He told me there were a few more tests we could do that wouldn't necessarily  tell me that I had it, but the would tell me that I wouldn't.

On my way out of the office, I was scheduled for a lumbar puncture and brain scans (to be done at a different site). He scheduled me for April Fool's day, but I figured the next day would be better. I wasn't looking forward to the procedure but I figured I had been through far more painful things in my life and this probably wouldn't even measure up.

Bruises take awhile to heal

Between the needle pricks and the ER doctor telling me it was "an exciting time to be alive," what with the new developments in medicine, all I wanted to do was cry and sleep. Unfortunately, I had to be back in the ER the next morning for my second steroid drip.
It didn't go as badly as the first, since they made me keep the shunt in, but it still felt weird.

March 13, 2008

I suppose I should start at the very beginning, I hear that it is a very good place to start.
On Thursday, March 13, 2008, I woke to find half of my body numb. The night before my right thigh started to feel a bit numb and tingly, but I thought I had just pinched a nerve. When I woke with the entire right side of my body (from the shoulder blade to the bottom of my foot) numb, I figured something was a bit off. Still, foolishly, I did not go to the hospital. Instead, I called in and told work I would be a few hours late because of the pinched nerve. It ended up taking me about two hours just to walk to the bus stop, ride the bus 15 minutes and walk the 1/2 mile to work. Still, I did not panic. I told a few of my co-workers that I thought I pinched a nerve and they told me to call the 24-hour nurse's line through our insurance. I didn't call right away; I waited another hour or so. When I finally called, the nurse told me to get off of the line right away and call 911. I was confused, why would I call 911? I hadn't be shot and I hadn't had a heart attack or anything. She told me my symptoms sounded like I had had a stroke in my sleep. I didn't realize just how frightening this news was until I repeated it to someone else. I attempted to tell one of my co-workers but started balling in the process. She only heard the 911 part and promptly grabbed car keys.