Sunday, February 7, 2010

An Eventful Day

Friday was quite an eventful day, which is pretty impressive, considering my many limitations.

It started off with a morning in which I couldn't sleep too much. This has continued since then, and I know I'm leaning toward the hypomanic side, so I blame it on this. Due to this, I started reading my book around 8:00, and I got out of bed around 9:15. I ate breakfast. Then, went back upstairs and sorted out some of my stuff (in the a.m. hours). I took a Provigil at this point, because I knew I would need it for the day. (I'm not taking Provigil with any regularity anymore, because it makes me do more than my body is capable of doing.) Next, at about 11:00, I got in the bath, which is actually quite an arduous task, for me. I packed up the rest of my stuff for my weekend in Wisconsin. My mom and I left the house at 1:15 (This is a very active start to the day).

We went to a 1:50 appointment with the eye doctor. I had two scans done there. Since I have very large pupils that are completely non-reactive to light, I didn't need to be dilated for either scan (just another sign of worsening autonomic dysfunction due to brainstem compression). One scan was a 3D optic nerve scan. This was just a couple really bright flashes in each eye. Really bright lights. It took a 3D picture of my optic nerves. Next, I had an optical coherence topography scan done. This one is pretty cool. It shows the depth of the optic nerve. With these scans, they were able to determine that my vision is essentially "safe." Even though the discs are bulging, underneath it, there are thousands of healthy nerve fibers. So, my vision is not at risk, over time, or with surgery. She also explained the bulging as an anatomical anomaly. Whereas most people have optic nerves that are "innies" (think belly buttons), I have "outies." What a perfect explanation, right? So, that's why my optic nerves always look so funny, and seem to perplex so many doctors. I may not have even ever had papilledema in the first place. But my weird optic nerves did catch the needed attention to get a brain mri ordered in the first place. Just another weird anomaly of my very interesting anatomy. I really do have an interesting list of birth defects. What a weird little girl my parents never knew they had!

After the eye doctor, we were hoping to catch a 3:37 train to Milwaukee. Unfortunately, there wasn't nearly enough time to get to the station. So, we had to stall. The next train was at 5:32. It seemed like a lot of time, but the station was a ways away, in rush hour traffic, in snowy weather. So, we decided to stop at Costco to sort out a membership issue. Then, we stopped at Subway to buy my dinner that I would eat on the train. I got to the station by 5:00. I had to sit around a bit, but it's better than missing my train.

Okay, are you ready for another train story?

Well, I was ready for my train this time. I had my bags. I asked for help with only getting my walker up the stairs. Sounds easy enough. I was the last one onto the car, as always, because I'm handicapped. So, I stood there alone, trying to fold up my walker while holding 3 bags. It was actually really hard to do. You need to get the walker at just the right angle to fold the sides in. By the time I had it folded up, I saw that there was absolutely no where to put it. There's only one place on each car to put walkers and wheelchairs, but the area isn't actually reserved for them. It was completely full of suitcases. I decided I would just lean my walker sideways against the suitcases and get to a seat as soon as possible, because I know how hard it can be to find a seat. Unfortunately, I was too late. The train started moving. My walker was already folded up. There was nothing on the walls to hold on to. I fell flat on my butt, and with the movement of the train, rolled backwards onto my back. Everyone in the train car was staring at me, but no one moved to help me. I really didn't know what to do.

Luckily, on my train each weekend, a guy named Marty sells concessions. He is one of the friendliest guys you'll ever meet. While I was on my back, he came running down the aisle. He immediately moved the baggage out of the way for my walker. One lady whined/complained ("Hey! That's my bag!"), but he didn't care at all. Then, he told the person sitting in the front seat she would need to move. She looked shocked and appalled, but she did it immediately. Because Marty meant business. Keep in mind, the train attendant didn't do any of this himself, even though it's his job. Marty helped me up and even brought me a free bottle of water. It's amazing. Everyone will stare at you. But not a single person other than Marty offered to help. They even looked annoyed at having to do anything that might disrupt their day.

So, I should have been set for the rest of my ride, right? No. Because I'm me. But really this part of the story isn't about me, so I will do my best not to make it about me. After about 10 minutes of our ride north, our train came to a sudden stop. The emergency brake and been pulled. I was facing backward (bad idea), so the pressure on my neck of the inertia of the train was intense. The lights flickered off and on. It was a little scary. A very vague announcement was made about an "incident" and a "delay." So, we sat. For quite a while, we were under the impression that something was wrong with the train. Eventually, during one of my phone calls with Gustavo, he read online that pedestrians had been hit by a train in Lake Forest. I knew immediately that it was our train. We learned later that two teenagers were hit, and at least one of them was killed by our train. We stayed where we were for 2 1/2 hours. No passengers were allowed off the train. Marty wasn't his same cheerful self, but he did sell out pretty much all his merchandise, especially all of his alcohol. But we, the passengers, were never officially informed of the nature of the "incident." We figured it out on our own.

My back was in serious pain by the end of the night. The seats recline, but just barely. And my head pain spread throughout my skull. I felt very faint during much of our delay. But again, this night wasn't about me. Some passengers didn't realize that this delay wasn't about them. For example, as we were waiting, one woman was making very loud phone calls during most of the ride. On every phone call, she would say, "I'm having the worst day ever. You wouldn't believe what's happening to me." I understand that it was an uncomfortable inconvenience. But we had a bathroom and concessions that didn't quite run out. So, I'd say, we didn't have it so bad. The families of the victims had a very bad day. The train engineer that left the train with a pale, blank face after having seen everything happen: he had a very bad day. But for the passengers, it couldn't possibly be the worst day.

But, I'm very glad it's over, and I'm very sorry that it happened. It's just a rumor, but I heard that they were just walking across the tracks, and didn't see the lights. There was another death at this same station just a couple months ago.

Moving on, because it's hard to think about this too much.

For me, personally, I need to figure out how to work out the train ride a little bit better. I certainly don't have a manageable system figured out yet. I could go back to the wheelchair, because then I won't need to stand up on the train, but I will have to deal with the lifts and the fact that I don't get a real seat; I have to stay in my wheelchair. That causes the bumps of the ride to be especially rough. So I don't like that option. So, I think what I need to do is the following:
*Get in line with my walker, but collapse the walker on the platform, so I don't have to do it on the train, as it takes up valuable time.
*Ask the attendant to stow the walker for me AND assist me to a seat, so I don't fall down.
*Bring less baggage.
*Wait until the train has definitely stopped to stand up, or I will just fall down again when it lurches at the end.
Maybe, if I do these things, I won't have so many little disasters on the train. I'm still feeling the falls. I really cannot stand up whenever the train is moving. It just multiplies my vertigo, making it impossible to stay upright without strong assistance.

Medication update:
The side effects from the Topamax are wearing off (the tingling), but I don't think my headaches are any better. I will try to increase the dose this week. The Mobic, which is supposed to be like Celebrex, but better, isn't working well at all. I think I'd be better off with Advil, at this point. So, I'm going to test out Celebrex soon.