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.
Sunday, February 7, 2010
Wednesday, February 3, 2010
Coming out of hibernation
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
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
Wednesday, December 23, 2009
rambling thoughts
Too sick to write for real. Just thoughts...
Still restricted to bed. Can't be touched, cause it hurts. palpitations resonating through my upper body every 10 seconds. hot and cold flashes are painful and frequent.
trying to avoid e.r. they won't help. so what will? cardiologist will only deal with palpitations
how to get a doctor to take me seriously. dr. g is known to make me cry by saying that i just need to exercise. but he's the only pots doctor i have.
paroxysmal rage and crying spells are making me scary and useless. maybe i'm just mentally unstable
Dr. W--look into sleep meds for worsening insomnia
Custom CTO? How to get one. If it would help.
Dr. K--help with emotional pain
how to keep living this life? when you just don't want to anymore. nothing anyone does can actually help.
poor buttons, my puppy with gallbladder disease, she hurts all the time. she has no choice but to wait, too.
consider a port for frequent fluid infusions. symptoms seem to lessen with increased salt and fluids
Still restricted to bed. Can't be touched, cause it hurts. palpitations resonating through my upper body every 10 seconds. hot and cold flashes are painful and frequent.
trying to avoid e.r. they won't help. so what will? cardiologist will only deal with palpitations
how to get a doctor to take me seriously. dr. g is known to make me cry by saying that i just need to exercise. but he's the only pots doctor i have.
paroxysmal rage and crying spells are making me scary and useless. maybe i'm just mentally unstable
Dr. W--look into sleep meds for worsening insomnia
Custom CTO? How to get one. If it would help.
Dr. K--help with emotional pain
how to keep living this life? when you just don't want to anymore. nothing anyone does can actually help.
poor buttons, my puppy with gallbladder disease, she hurts all the time. she has no choice but to wait, too.
consider a port for frequent fluid infusions. symptoms seem to lessen with increased salt and fluids
Friday, December 18, 2009
Frustrating Heart Symptom
I have had this symptom occasionally for a long time, but every doctor has ignored it. I just want to know what it is, especially since it is getting more and more frequent.
So, originally, I labeled this symptom as a palpitation. But it seems to be more than that.
I will do my best to describe.
It feels like my heart forgets to beat, and then starts pounding and trying to make up for what it missed. It feels a bit like being startled. But I don't just feel it in my chest. I feel the pounding in my hands and the front of my face, too.
It usually happens spontaneously. But when it's really bad, it will happen repeatedly, especially when I try to talk or even just exhale.
Another way to describe it is the feeling you get when you hold your breath for too long, so your heart starts pounding. But I'm not holding my breath.
I would really like to know what is happening, and why. I also wonder if an anti-arrhythmia drug might help.
Too bad none of my cardiologists have ever taken me seriously. But it feels like a symptom that should be taken seriously. It disrupts whatever I'm doing, often for an entire day. The only relief comes from laying flat and breathing steadily (not too fast or slow).
Yet another reason to never again leave my bed.
So, originally, I labeled this symptom as a palpitation. But it seems to be more than that.
I will do my best to describe.
It feels like my heart forgets to beat, and then starts pounding and trying to make up for what it missed. It feels a bit like being startled. But I don't just feel it in my chest. I feel the pounding in my hands and the front of my face, too.
It usually happens spontaneously. But when it's really bad, it will happen repeatedly, especially when I try to talk or even just exhale.
Another way to describe it is the feeling you get when you hold your breath for too long, so your heart starts pounding. But I'm not holding my breath.
I would really like to know what is happening, and why. I also wonder if an anti-arrhythmia drug might help.
Too bad none of my cardiologists have ever taken me seriously. But it feels like a symptom that should be taken seriously. It disrupts whatever I'm doing, often for an entire day. The only relief comes from laying flat and breathing steadily (not too fast or slow).
Yet another reason to never again leave my bed.
The Inevitable Reality Check
Whenever I write a painfully real blog, I later feel guilty for sharing this dark side with the world. I don't think I'll delete the last post. But I will say that rage attacks are horrific for anyone involved. And I'm currently suffering from Pre-Menstrual Psychosis. I believe this is caused by compression of the pituitary gland. So, I will officially be skipping my period for the foreseeable future. There is no good reason to go through that kind of torture. I do not like being possessed and out of control.
However, my hormones simply made my everyday struggles seem even worse. My feelings were still valid. Just a bit augmented.
Thanks for caring.
However, my hormones simply made my everyday struggles seem even worse. My feelings were still valid. Just a bit augmented.
Thanks for caring.
Thursday, December 17, 2009
The Emotional Toll
Today was truly unbearable. My symptoms have been so persistent. My functioning has been non-existent. The misery is so all-encompassing. It reached that point again...where I just can't take it anymore. The hysteria lasted longer than it ever has. The rage and despair just took over. I was a person possessed. I know it put such a strain on my family. I wanted to stop. I just couldn't. For hours. I finally put myself in a cold shower, after 3 Klonopins failed to calm me. I feel so terrible for my family. My loved ones are the only reason I haven't left this world much sooner. There's nothing within me that would stop me from giving up, completely and utterly. How else would I go through 7 years of intense distress...10+ years of pain? I have no choice. I can't even choose to cut myself anymore. I have no idea what I would do without my support. They are the only reason I hold on.
It's just that sometimes, it feels like a tug of war. My body is constantly telling me that something is horribly wrong. But there is nothing to do about it. Absolutely nothing. And it's so frustrating for those around me to not be able to do anything to help. But the tug of war is in me. I want to give up. I want to succumb. I don't know how to face another day (which I've said 1,000 times before). But I can't succumb, because I could never hurt my family that way, after all they've done for me.
But when will it be enough? When will I finally have gone through enough? How bad does it have to get before they'd let me leave?
I know the answer to this question. I don't get to leave. It will never be an option, no matter how unbearable my illness becomes.
I guess, on days like today, when I am so completely out of control, I wish we could have just called 911, had an ambulance come over and tranquilize me. That is what I needed. The medicine didn't work. After several hours, I put myself in a cold shower and screamed and cried. I had to treat my body like a body possessed. It was completely out of my control. Believe me. I'm great at meditation and progressive muscle relaxation. I can lower my blood pressure within a couple minutes (which is very unsafe). But none of that was an option today. With this level of depression and rage, it truly is beyond your control. So, sometimes it's best to just isolate yourself, so your loved ones don't have to go through all of the pain with you.
The shower worked this time. I truly hope that next time, we will have something stronger than Klonopin. I've been dealing with these hysterical rage attacks for quite a while.
I'm just sure I shouldn't be sharing all of this information with the whole internet. However, I know that other people in my situation read this page sometimes. And I'd rather not put up a front, in the one place I'm supposed to be able to express myself...to describe what it is really like to go through torture for 7 years straight.
I understand that this is a down time. Today is a day when I need to learn, again, how to come to terms with my situation. I will reach a point of acceptance again. And the cycle will continue. As it has for so long.
Do you know how long 7 1/2 years is? Think of how much has happened in 7 1/2 years. And all that time, I've been feeling just like this. All these same symptoms. Constant, unending pain. Body failing. Since I was 18 freaking years old.
I follow the people that used to be my friends on Facebook. I watch, I read, I follow their lives. I see all of the things they do, all of the places they travel to, all they achieve and accomplish. I lost my shot at achieving anything. I had to give up on my dreams.
And honestly, most of the time, I can accept that. I really can. I just wish that each day didn't have to be so hard. If I just had to lie in bed all day and accept the loss of everything I should be doing, I could accept that. Seriously. Believe me, I've been accepting that for quite a while. Since high school, my symptoms have made me miss out on things that I should be doing. If I could just rest during the day, in semi-comfort, I would be able to handle this better.
But that's not my life. I don't just lie in bed all day, comfortably, watching the minutes drag by. Nope. I hurt. I hurt so much. The pain is so omnipresent. My body twitches uncontrollably. My heart cannot keep a steady rhythm, so it races and skips and pounds. I feel like I'm being electrocuted. I can't get comfortable no matter how hard I try.
Is it time to seek medical marijuana? Ketamine? Is it time to be hospitalized and tranquilized full-time? All of those sound preferable to my present.
But I wouldn't know where to start. And I don't think my family could accept that. It's hard for them to accept that I should not be getting out of bed for anything, most of the time.
I'm just glad I'm not alone. I need to try to stop venting to the same people. It's too much of a burden for them, because they love me so much. That's why I put myself in a cold shower today. I didn't want to drag my mom through the storm with me.
I wish I could stop crying, so I could stop torturing my loved ones.
It's just that sometimes, it feels like a tug of war. My body is constantly telling me that something is horribly wrong. But there is nothing to do about it. Absolutely nothing. And it's so frustrating for those around me to not be able to do anything to help. But the tug of war is in me. I want to give up. I want to succumb. I don't know how to face another day (which I've said 1,000 times before). But I can't succumb, because I could never hurt my family that way, after all they've done for me.
But when will it be enough? When will I finally have gone through enough? How bad does it have to get before they'd let me leave?
I know the answer to this question. I don't get to leave. It will never be an option, no matter how unbearable my illness becomes.
I guess, on days like today, when I am so completely out of control, I wish we could have just called 911, had an ambulance come over and tranquilize me. That is what I needed. The medicine didn't work. After several hours, I put myself in a cold shower and screamed and cried. I had to treat my body like a body possessed. It was completely out of my control. Believe me. I'm great at meditation and progressive muscle relaxation. I can lower my blood pressure within a couple minutes (which is very unsafe). But none of that was an option today. With this level of depression and rage, it truly is beyond your control. So, sometimes it's best to just isolate yourself, so your loved ones don't have to go through all of the pain with you.
The shower worked this time. I truly hope that next time, we will have something stronger than Klonopin. I've been dealing with these hysterical rage attacks for quite a while.
I'm just sure I shouldn't be sharing all of this information with the whole internet. However, I know that other people in my situation read this page sometimes. And I'd rather not put up a front, in the one place I'm supposed to be able to express myself...to describe what it is really like to go through torture for 7 years straight.
I understand that this is a down time. Today is a day when I need to learn, again, how to come to terms with my situation. I will reach a point of acceptance again. And the cycle will continue. As it has for so long.
Do you know how long 7 1/2 years is? Think of how much has happened in 7 1/2 years. And all that time, I've been feeling just like this. All these same symptoms. Constant, unending pain. Body failing. Since I was 18 freaking years old.
I follow the people that used to be my friends on Facebook. I watch, I read, I follow their lives. I see all of the things they do, all of the places they travel to, all they achieve and accomplish. I lost my shot at achieving anything. I had to give up on my dreams.
And honestly, most of the time, I can accept that. I really can. I just wish that each day didn't have to be so hard. If I just had to lie in bed all day and accept the loss of everything I should be doing, I could accept that. Seriously. Believe me, I've been accepting that for quite a while. Since high school, my symptoms have made me miss out on things that I should be doing. If I could just rest during the day, in semi-comfort, I would be able to handle this better.
But that's not my life. I don't just lie in bed all day, comfortably, watching the minutes drag by. Nope. I hurt. I hurt so much. The pain is so omnipresent. My body twitches uncontrollably. My heart cannot keep a steady rhythm, so it races and skips and pounds. I feel like I'm being electrocuted. I can't get comfortable no matter how hard I try.
Is it time to seek medical marijuana? Ketamine? Is it time to be hospitalized and tranquilized full-time? All of those sound preferable to my present.
But I wouldn't know where to start. And I don't think my family could accept that. It's hard for them to accept that I should not be getting out of bed for anything, most of the time.
I'm just glad I'm not alone. I need to try to stop venting to the same people. It's too much of a burden for them, because they love me so much. That's why I put myself in a cold shower today. I didn't want to drag my mom through the storm with me.
I wish I could stop crying, so I could stop torturing my loved ones.
Tuesday, December 15, 2009
Loneliness as time crawls by
Nothing new here. Just spending more days isolated in my room, confined to bed except for bathroom trips (thank goodness for that).
I don't so much mind my time being pointless (for now). I do mind that time moves so slowly. That I am so often alone. And that I can't have more "comfortable" time.
So much of the time, I'm having twitches throughout my body, especially in my legs. The muscles are fatigued and achy because they twitch all the time.
I'm also having trouble chewing, due to jaw pain.
It hurts to move even in tiny ways so often. Like right now, I get a wave of pain throughout my body every time I move. It's so frustrating.
Then, of course, there's the ice pick in the head type headache that lasts 2-5 days at a time.
Then, there's the baseline headache of pressure everywhere and the "sunken halo" headache.
I've been having palpitations more recently, as well. It feels like my heart misses a beat or two, then tries frantically to make up for lost time. I feel my heart pounding through my chest, neck, and shoulders when this happens.
The knee pain is very sharp with weight bearing, or even sitting or laying in the wrong position.
The body ache is quite severe tonight, as well.
Oh well. That's all that is happening here. I wish this time could go faster. I wish I could skip ahead to better days. I know there will be better days. It's just getting there that is so hard.
I don't so much mind my time being pointless (for now). I do mind that time moves so slowly. That I am so often alone. And that I can't have more "comfortable" time.
So much of the time, I'm having twitches throughout my body, especially in my legs. The muscles are fatigued and achy because they twitch all the time.
I'm also having trouble chewing, due to jaw pain.
It hurts to move even in tiny ways so often. Like right now, I get a wave of pain throughout my body every time I move. It's so frustrating.
Then, of course, there's the ice pick in the head type headache that lasts 2-5 days at a time.
Then, there's the baseline headache of pressure everywhere and the "sunken halo" headache.
I've been having palpitations more recently, as well. It feels like my heart misses a beat or two, then tries frantically to make up for lost time. I feel my heart pounding through my chest, neck, and shoulders when this happens.
The knee pain is very sharp with weight bearing, or even sitting or laying in the wrong position.
The body ache is quite severe tonight, as well.
Oh well. That's all that is happening here. I wish this time could go faster. I wish I could skip ahead to better days. I know there will be better days. It's just getting there that is so hard.
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