Dan is at St. Paul's now (until at least early next week most likely). He has an EMG tomorrow or Friday and will find out about the muscle biopsy tomorrow as well.
He's in the Providence Wing, level 7B, room 25. Visiting hours end at 8pm.
More to come...
Wednesday, May 31, 2006
15
I'm going to St Paul's Hospital. I have no idea how long I will be there, but my GP thinks it won't be more than a few days.
They don't have Internet access there, so Jer might post a few updates on the blog if I end up in the hospital for a longer time. If you e-mail me, I probably won't respond for a while. Phone calls are welcome though.
They don't have Internet access there, so Jer might post a few updates on the blog if I end up in the hospital for a longer time. If you e-mail me, I probably won't respond for a while. Phone calls are welcome though.
Tuesday, May 30, 2006
14
I feel overwhelmed. So much happened last week that I just didn't have time to write about.
I'm working from home this week. I really have to say how supportive my company and my coworkers are. This is the first place I've worked where employees are not treated as resources. My productivity has gone down significantly, but they are letting me take time off to go see doctors and take care of myself. Now, they gave me a company laptop so that I can work from home and continue to get paid. If I go on disability, that puts me into a negative cash flow (assuming I'm eligible - there is no diagnosis). There is no way I would have had the same support from management at my previous company, and because of its remote location in Langley, getting out to see a doctor would have been a day off rather than a few hours off.
At my parents' insistence, I went to see a naturopath last week. Naturopaths don't really deal with hard facts, but after seeing him, he thinks that I have a virus. He can't identify what the virus is, but after doing his tests, believes my pancreas is a problem. He suggested an IV vitamin C, which will kill off viruses. He seems very confident that he can reverse the problem. My faith in naturopaths is very low, but when the genetic test result came back negative on Friday, that gave me a bit more faith in what they do.
I also now have someone helping me with my diet, who I met while at the naturopathy clinic last week. He put me on a smoothie diet, with a bunch of supplements to make sure I'm getting all the nutritional value I need. They taste quite good and are very sweet from the natural sugar in the fruits. I'll probably get sick of smoothies very soon though.
I did a Vitamin C treatment yesterday and also lied in a hyperbaric oxygen chamber. The chamber is supposed to help regenerate my nerves. It makes my fingers tingle. I will give the alternate medicine a week or two to see if it helps. My mother is so insistent that naturopathy is the way to go because "people die in hospitals."
The doctors at the hospital want to admit me as an inpatient. They are worried that I might fall and break something in my body. If I do and it puts me in a bed, then my muscles will atrophy faster since they would not be used at all. They can also do their tests more effectively, since they can order the test and get the result back right away, instead of making an appointment in a few weeks and waiting another week for the result as an outpatient.
I'm working from home this week. I really have to say how supportive my company and my coworkers are. This is the first place I've worked where employees are not treated as resources. My productivity has gone down significantly, but they are letting me take time off to go see doctors and take care of myself. Now, they gave me a company laptop so that I can work from home and continue to get paid. If I go on disability, that puts me into a negative cash flow (assuming I'm eligible - there is no diagnosis). There is no way I would have had the same support from management at my previous company, and because of its remote location in Langley, getting out to see a doctor would have been a day off rather than a few hours off.
At my parents' insistence, I went to see a naturopath last week. Naturopaths don't really deal with hard facts, but after seeing him, he thinks that I have a virus. He can't identify what the virus is, but after doing his tests, believes my pancreas is a problem. He suggested an IV vitamin C, which will kill off viruses. He seems very confident that he can reverse the problem. My faith in naturopaths is very low, but when the genetic test result came back negative on Friday, that gave me a bit more faith in what they do.
I also now have someone helping me with my diet, who I met while at the naturopathy clinic last week. He put me on a smoothie diet, with a bunch of supplements to make sure I'm getting all the nutritional value I need. They taste quite good and are very sweet from the natural sugar in the fruits. I'll probably get sick of smoothies very soon though.
I did a Vitamin C treatment yesterday and also lied in a hyperbaric oxygen chamber. The chamber is supposed to help regenerate my nerves. It makes my fingers tingle. I will give the alternate medicine a week or two to see if it helps. My mother is so insistent that naturopathy is the way to go because "people die in hospitals."
The doctors at the hospital want to admit me as an inpatient. They are worried that I might fall and break something in my body. If I do and it puts me in a bed, then my muscles will atrophy faster since they would not be used at all. They can also do their tests more effectively, since they can order the test and get the result back right away, instead of making an appointment in a few weeks and waiting another week for the result as an outpatient.
Friday, May 26, 2006
13
The blood test result came back negative. It's not SMA.
That gives me a lot of hope. Today was the first time I left the hospital not depressed.
The next steps they want to take are a lumbar puncture and muscle biopsy.
That gives me a lot of hope. Today was the first time I left the hospital not depressed.
The next steps they want to take are a lumbar puncture and muscle biopsy.
Tuesday, May 23, 2006
Camping at Harrison Lake
I went camping for the May long weekend, from Friday night to Monday afternoon. I saw a rehab doctor on Friday morning, and when I mentioned that I had plans to go camping over the weekend, his response was, "I don't think so." He didn't actually say "no," so I took that as more of a guideline than a rule. Besides, with my condition getting worse, I want to be out doing things with friends and not staying at home. There will be lots of time for that if I can't overcome it.
I am never going offroading in my Accord again. Next time, we are renting an SUV. It is much less stressful when the vehicle isn't mine. We camped about 35 km north of Harrison Hot Springs, up Harrison Lake. The 35 km were along a dirt logging road, which involved driving through huge sinkholes and three streams, each stream up to a foot deep. Due to some logistics problems fitting everything into the car, we lost a lot of time unpacking and repacking everything and leaving behind things that we wouldn't need, first at Mike's place, then at Amy and Sarah's. We got to the logging road at around 9pm.
Sunset is at around 9pm, so it was dark going down that road. We went through a roadcheck entering the road; all they wanted to know was if we had any open alcohol in the car. After crossing the second stream, we drove up a hill and there was a truck with its headlights shining at us. As I approached within 10m of the truck, blue and red lights flashed on it and a conservation officer appeared out of the pitch black. He took a look at us and told us we were the first people to go past that weren't doing 500 things wrong and to bring more of our friends. I think Amy sitting behind me, holding a tupperware container of homemade cookies, might have helped too. If only he knew what our friends really are like.
I think we arrived at around 11:30. It was raining and it was a long drive going 10-20 km/h in the pitch black, with no way of seeing how deep the streams were in the dark. I could hear the sound of a river when we unpacked, but it was too dark to tell where it was.
The next morning, when I stepped out of the tent, my first comment was, "wow, there's a river next to us!" It was huge and fast flowing. Maj swam across it later in the weekend and ended up about 30m downstream on the other side.
There were about 25 of us altogether, and I am really impressed with the group of people there. I needed a lot of help getting around. I couldn't get out of the tent without someone lifting me up, nor could I get out of the lawn chairs (they were the foldable ones that you sink into). For some of the bigger, stronger guys, they just lifted me up like I weighed nothing.
We had a hot tub going on Saturday. Some of the guys brought an 8'x4' inflatable kiddie pool, a bilge pump, two garden hoses, and about 50' of 3/4" coiled copper piping. They put the copper coil into the hot embers of the campfire, used the pump to pump the water out of the pool through the garden hose, into the copper coil, then out to the other hose and back into the pool. Saturday ended up being the trial run. I think they gave up on it at around midnight or 1am after they couldn't get the water hot enough. Some of the guys tried it anyway and figured it would feel hotter if they did a river dance in the glacier cold river before going into the pool. They started earlier on Sunday and managed to get it hot enough to sit in by late afternoon. It wasn't as hot as a real hot tub, but it was warm enough. I really wish I could move around normally. I want to do all the stupid things that everyone else was doing.
I woke up on Sunday morning writhing in pain in one of my muscles or ligaments in my right leg. Amy went to get Sasha (a RN) who gave me some T3s for the pain. I felt a mild pain on Saturday but it didn't seem like anything. I think I overexerted myself from the drive to the campsite. I drove for more than six hours, and a third of that was constant braking and accelerating on the dirt road. I took T3s throughout the day, and then regular ibuprofen after that. The pain slowly went away over Sunday and Monday, and I haven't taken any Tylenol all day today. There is still a mild pain, but I can live with it. I would rather not take a pill if I can avoid it. The pain is there for a reason to tell me something is wrong, and otherwise I'm just masking the pain and might make it worse by exerting myself too much again.
I am very glad I went. Although it rained for almost the entire weekend, Sunday afternoon was awesome with the sunshine. I spent the weekend with a great group of people. It was really nice being waited on by the girls and having food brought to me, but I still would rather have been able to cook for myself. Thank you to everyone who helped me out over the weekend.
The photos are posted in the photo gallery.
I am never going offroading in my Accord again. Next time, we are renting an SUV. It is much less stressful when the vehicle isn't mine. We camped about 35 km north of Harrison Hot Springs, up Harrison Lake. The 35 km were along a dirt logging road, which involved driving through huge sinkholes and three streams, each stream up to a foot deep. Due to some logistics problems fitting everything into the car, we lost a lot of time unpacking and repacking everything and leaving behind things that we wouldn't need, first at Mike's place, then at Amy and Sarah's. We got to the logging road at around 9pm.
Sunset is at around 9pm, so it was dark going down that road. We went through a roadcheck entering the road; all they wanted to know was if we had any open alcohol in the car. After crossing the second stream, we drove up a hill and there was a truck with its headlights shining at us. As I approached within 10m of the truck, blue and red lights flashed on it and a conservation officer appeared out of the pitch black. He took a look at us and told us we were the first people to go past that weren't doing 500 things wrong and to bring more of our friends. I think Amy sitting behind me, holding a tupperware container of homemade cookies, might have helped too. If only he knew what our friends really are like.
I think we arrived at around 11:30. It was raining and it was a long drive going 10-20 km/h in the pitch black, with no way of seeing how deep the streams were in the dark. I could hear the sound of a river when we unpacked, but it was too dark to tell where it was.
The next morning, when I stepped out of the tent, my first comment was, "wow, there's a river next to us!" It was huge and fast flowing. Maj swam across it later in the weekend and ended up about 30m downstream on the other side.
There were about 25 of us altogether, and I am really impressed with the group of people there. I needed a lot of help getting around. I couldn't get out of the tent without someone lifting me up, nor could I get out of the lawn chairs (they were the foldable ones that you sink into). For some of the bigger, stronger guys, they just lifted me up like I weighed nothing.
We had a hot tub going on Saturday. Some of the guys brought an 8'x4' inflatable kiddie pool, a bilge pump, two garden hoses, and about 50' of 3/4" coiled copper piping. They put the copper coil into the hot embers of the campfire, used the pump to pump the water out of the pool through the garden hose, into the copper coil, then out to the other hose and back into the pool. Saturday ended up being the trial run. I think they gave up on it at around midnight or 1am after they couldn't get the water hot enough. Some of the guys tried it anyway and figured it would feel hotter if they did a river dance in the glacier cold river before going into the pool. They started earlier on Sunday and managed to get it hot enough to sit in by late afternoon. It wasn't as hot as a real hot tub, but it was warm enough. I really wish I could move around normally. I want to do all the stupid things that everyone else was doing.
I woke up on Sunday morning writhing in pain in one of my muscles or ligaments in my right leg. Amy went to get Sasha (a RN) who gave me some T3s for the pain. I felt a mild pain on Saturday but it didn't seem like anything. I think I overexerted myself from the drive to the campsite. I drove for more than six hours, and a third of that was constant braking and accelerating on the dirt road. I took T3s throughout the day, and then regular ibuprofen after that. The pain slowly went away over Sunday and Monday, and I haven't taken any Tylenol all day today. There is still a mild pain, but I can live with it. I would rather not take a pill if I can avoid it. The pain is there for a reason to tell me something is wrong, and otherwise I'm just masking the pain and might make it worse by exerting myself too much again.
I am very glad I went. Although it rained for almost the entire weekend, Sunday afternoon was awesome with the sunshine. I spent the weekend with a great group of people. It was really nice being waited on by the girls and having food brought to me, but I still would rather have been able to cook for myself. Thank you to everyone who helped me out over the weekend.
The photos are posted in the photo gallery.
Friday, May 19, 2006
12
Turns out that the doctor I saw today is an outpatient rehab specialist and not a physiotherapist. He did the usual tests all the other doctors did and then explained to me what was going to happen. He focuses on the prognosis, and he is going based on what the neurologist thinks I have. That means he is going to treat the symptoms and not the disease. He told me that any exercise I do at this point will just make me weaker and I'm at the point where he wants to check me into an inpatient clinic near the BC Children's Hospital to work on my strength. Normally they only accept patients who are already in a hospital. It will be a few weeks before that happens though.
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