So, I haven't written in quite a while, because my life has been stuck at such a standstill. Lying around in bed all day doesn't provide much inspiration for writing. I think I've finally collected enough little stories to add up to one post.
I've seen Dr. W, my pain management doctor, a few times. I've been taking Topamax for my chronic daily migraine. Unfortunately, I can't get up to a very high dose, because of my main side effect. The problem I have is with tingling in my hands, feet, and face. So, I'm not sure how much that medication will be able to help, unless the side effect wears off. Also, I've been put on Mobic. It is for arthritis pain. I've been on it for two days, so it's early, but I think it helps a little. I took my mom's Celebrex one day, out of desperation, and it seemed to help much more. But I'll give my medication a fair chance, before I ask for a switch.
I'm having severe hayfever symptoms, even though my last allergy tests were negative. My medications are not helping, and the symptoms are quite severe at times. The sneezing is definitely making my headache worse. Same with the sinus problems. I'll be seeing the allergist tomorrow.
I'm seeing the eye doctor for a 3D optic nerve scan Friday.
I also started seeing a new psychiatrist. Over the holidays, it became clear that my psychological state was evolving. I didn't feel comfortable going to my current doctor with this issue. So, I arranged to see a new psychiatrist in January. I really like her a lot, and I really trust my treatment to her. It's hard to say whether my psychological condition is organic (occurring naturally) or secondary to a neurological or pharmacological problem. Nonetheless, it needs to be treated and managed. I have developed symptoms of hypomania that are very troublesome at times. This is a symptom of a condition called Bipolar II. That is the "lesser" form of Bipolar, because the episodes of mania are less severe. However, the episodes of depression are no less severe. This is not necessarily part of the Bipolar II. As long as I stay on top of my meds, I don't have much trouble with it, for now, thank goodness. This is actually a manageable condition, unlike my others. I should mention, though, for some people, it is much less manageable. I've just been very lucky, so far. In addition, I have a condition involving rage episodes. This is a very difficult thing to deal with, and can be quite severe at times.
We removed the car insurance from my car, because I haven't driven it in so long. That's perfectly logical. It just makes it very clear that I will not be well enough to drive for a very long time. It's an overwhelming thought: that I will be trapped in this house most of the time for so long. And that I really have lost my independence. I can't go anywhere without asking someone else first!!!! This is a tough one to get used to. But it's made less hard by the fact that it's been a very gradual transition. I actually haven't driven my car in at least two months, so this isn't actually something new. It's just the possibility that is gone.
Luckily, with the money we're saving on car insurance, we were able to buy a 10-ride ticket on the Amtrak for me to go to Milwaukee. So I'll be able to take the train into Milwaukee to be with Gustavo most weekends in the near future. It's quite an expensive ride, and the ride to the station is a little out of the way on both ends, but it's worth it to continue my weekend visits.
So far, I've taken the train twice. The first time, I used my wheelchair, and bought a handicapped ticket (which gets you 15% off, with an unpublished discount). When you want to ride the train in a wheelchair, you have to call ahead, and arrive early. Then, you have to ride out to the train, with all your stuff in your lap. Then, you roll onto a lift. They crank the lift up. Next, you have to ride off the lift, onto the train. You can tell that they don't do it very often, because they're not very good at getting the levels even, or lined up with the train. It seems like a pretty perilous transfer. Luckily, I made it okay onto the train. There's only one place you can sit. It's next to the garbage cans in the front of the car. You slide into place facing sideways; then lock into place. You don't get to move the entire ride. You hold your baggage on your lap the entire ride. I was incredibly uncomfortable. Also, while the other passengers are casually swaying side to side, you are in your own miniature amusement park ride, getting miniature cases of whiplash every time the train "sways" from side to side. Since you are facing sideways, this sway is a front-to-back jerking to you. Overall, the ride was incredibly uncomfortable, and I wouldn't recommend sideways train riding to anyone with neck damage. Also, the luggage in my lap made it impossible to readjust my position or stretch my legs. So my legs and back were all knotted up by the end of the ride. I couldn't believe the passengers so near to me were yawning, listening to iPods, casually relaxing, or even sleeping through this nightmare!
Then, on the ride home, my fellow train-riders and I were in for a surprise, as we waited an hour and a half for our train to be ready to board. When the announcement was finally made, I wasn't too surprised to hear that the train was not in working order, and we would all be taking buses to Chicago. This was all new to me, but I figured if I could survive the ride in on the train, I could certainly survive the ride out on a bus. But that was not the plan. Since I was their only "special" passenger, I was the only one that would not be taking the buses, which were not accessible. Instead, I would be taking a cab all the way to Chicago. It was already 10:00 at night. If I were given the choice, I probably would have chosen to stay in Milwaukee one more day, but this was already planned without me. So, I waited another 25 minutes, until after the buses had already departed. My "cab" came. It was actually just a guy in a car. Not even a specially marked car. Luckily, he was legitimate. But my wheelchair had to be completely broken down to fit in his car. This was definitely not any more accessible than the bus would have been. Plus, we ran out of gas, and he didn't have money. Plus, he didn't use any heat, in January. So it was freeeeeezing. And I had such a headache after the long night, so the loud music didn't help.
So, after taking the train on a wheelchair, you'd think I wouldn't be anxious to do it again. But when you run out of transportation options, public transportation starts to look pretty good. So, the next time, I decided that maybe the train would work better if I took my walker. At least I wouldn't need the lift, right? So, we bought the 10-ride ticket, which gives you a 25% discount. You can't get a discount for being disabled, in addition. So this discount is better, anyway. When my train arrived, I was zoning out. I didn't even hear it called. So the guy working at the station came to help me, saying he didn't want me to miss my train, which was really nice. He offered to help me with my stuff, which was also really nice. I had with me: my walker, a messenger bag, a backpack, and a purse. He took: the walker and the messenger bag. Yes. The walker. He pushed the walker all the way out to the platform from inside the station. Luckily, I can walk without the walker. I use it for security, for balance, and for sitting. But this was one of the strangest kinds of help I've ever received. At this point, a worker on the train took the walker from him and loaded it on the train. I had to walk all by myself from the station to the platform and onto the train. My messenger bag was dropped onto the train for me. Unfortunately, it had my laptop in it, when it was dropped. This seemed like a very strange way of helping me. So, I was very tired at this point. I was out of breath and my legs were starting to give out on me. I had to find a seat, and none were readily available. I walked the entire length of the car (about 30 rows), carrying my 3 bags, holding onto seats as I walked. Whenever I saw an empty seat, it was a window seat, and the person in the aisle seat, blocking it, was either asleep, or pretending to sleep. I reached the other end of the car, and still had no seat. By this point, I was very weak, tired, and woozy.
Plus, the train was moving by now, so my vertigo was worse than usual. I could barely stay upright, and probably appeared drunk. What choice did I have but to turn around, looking even more pathetic, and this time, actually start begging for a seat. Luckily, the first person I asked actually took pity on me and let me sit. Probably because I looked quite sickly at this point. Once I sat down, I could finally relax. Other than my problem with germs in public places, I found myself to be pretty comfortable. My seat reclined (heaven). I didn't even need something to do. The crazy "turbulence" didn't bother me too much. Of course, I still wore my neckbrace, which I always wear. But, the side-to-side swaying didn't seem so rough. When I reached my stop, I took charge of my own possessions, meaning I carried my three bags and my walker down the steps (very difficult), but it was worth it. My ride back to Chicago was actually uneventful. No one stole my walker, even for a short time. I had temporary help with my bags. And I got a seat in the front row. So easy.
My other news is that I have an appointment with Dr. F, geneticist extraordinaire, scheduled! I'll be seeing her February 17th. I've been trying to figure out what to expect from this appointment, and what to ask her. I always compile a complete list of concerns and questions before an important doctor's appointment. I'm just not sure which concerns should be directed toward her. I know that she specializes in EDS. But she also helps people with POTS. And she is the one to talk to with genetic counseling type questions. So here's what I've got so far:
1. a. What can help with the especially slow recovery after cranio-cervical fusion (and revision)? My recovery took at least two years last time, with overwhelming and lasting fatigue, paralyzing muscle spasms, and relentless pain.
b. What kind of improvement is reasonable to expect (long-term) from a cranio-cervical fusion?
2. a. How to make a physical therapist understand EDS and POTS and establish a helpful and safe exercise routine?
b. What kinds of exercise are helpful and safe?
c. What movements/activities should be avoided to keep my joints strong as long as possible?
3. a. Is it okay to be on medication like Mobic/Celebrex/Vicodin forever?
4. a. What are my chances of passing this on (Chiari/EDS/POTS)--even a reasonable guess would be appreciated; any input would be appreciated?
5. a. Are there any vitamins/supplements that I should be taking regularly?
b. Is there a way to test to find out my levels of important vitamins to check for deficiencies?
6. a. I take 2000+ mg NaCl/day to maintain consciousness, but I'm worried about my bones. Any ideas on what else I can do about this?
b. I am on Forteo, to strengthen my bones before surgery, but I know my endocrinologist won't let me stay on it post-surgically, because she doesn't believe in off-label use. What should I do after that to keep my bone density up?
I have a million other questions, but I don't know if they're really her "field" or not. I can't just ask her every question that I don't know who else to ask. But I am also wondering about the following things:
*Heart palpitations-strong and resonating (intermittent symptom)
*hypersensitivity in skin (intermittent)
*severe PMDD, hormonal problems--------maybe this one
*IBS/bloating/severe abdominal pain (intermittent)--------maybe this one
*severe allergies with negative allergy testing (intermittent)
*Glucose level high in every blood test, but not diabetic--------maybe
