Yesterday was Thanksgiving, which was a lot of fun, but also quite a strain to get through. Tomorrow is my mom's wedding, which will be a wonderful day, but also a huge physical challenge. It is so important that tomorrow is NOT about me. That means: no passing out, no semi-conscious spells, no severe pain episodes that disrupt this important day. That's quite a challenge. Currently, my body is punishing me for the very active day yesterday (two different holiday dinners in different towns, and a game of pool). Today is payday. Every time I do more than I should, I pay for it later. There is no escape!!! Nothing comes free. So, today, I spent about an hour unconscious. Since then, I've been trying to rest with overwhelming head pain (about an 8, I guess...). It also hurts to move my body at all. Even typing. So I will keep resting and spend the day in bed. Hopefully, I can take a bath tonight, so I'm fresh and clean for the big day, tomorrow.
The other big news: It seems that I may be able to make a trip out to Maryland to see Dr. Francomano in the new year. Nothing is certain yet. But it is at least a possibility. It would be wonderful to see her, because she fully understands patients just like me, with Chiari, Cranial settling/instability, EDS, and POTS. If I were her patient, she would be able to help me get through the challenges of recovering from my upcoming surgery, which will hopefully be in the spring. I'll post more once I actually have some concrete information, not just an idea.
Friday, November 27, 2009
Friday, November 13, 2009
High pressure
Not blood pressure. That's very low, of course. The pressure inside my head seems to be at an all time high lately. My temples are so very swollen. Like my brain no longer fits in my head. It hurts so much. I wish I could have a spinal tap to empty out some CSF and decrease the pressure.
I've been trying to sort through tons of old junk in my room, but it just looks neater. It's actually a disorganized disaster. But it takes so much out of me to get anything done.
I barely move anymore. I'm limp and lifeless almost all of the time. I can't take it.
I want to go work out. I want to be in shape and not hate the way I look. I want to improve my body fat percentage. I want to feel well enough to do something that requires wearing make-up. I have such a meaningless existence, during the wait. I can't believe I'm still waiting. Watching more and more days pass by. Wasting time. So many years wasted. When can I finally live again? My joints will continue deteriorating for the rest of my life. I just want to get my head fixed while I've still got some life left to live.
What a waste! I wish this didn't all take so long. I wish I could have had all of my traumatic surgeries very close together. Then, spent a couple years recovering {which is how long it takes with POTS}. Instead of wasting so many years between surgeries. I want a life.
Sorry for complaining. I know it could be so much worse. But the headache pain, all-over pain, nausea, weakness, fatigue, and general sickness make me pretty crabby and miserable.
I've been trying to sort through tons of old junk in my room, but it just looks neater. It's actually a disorganized disaster. But it takes so much out of me to get anything done.
I barely move anymore. I'm limp and lifeless almost all of the time. I can't take it.
I want to go work out. I want to be in shape and not hate the way I look. I want to improve my body fat percentage. I want to feel well enough to do something that requires wearing make-up. I have such a meaningless existence, during the wait. I can't believe I'm still waiting. Watching more and more days pass by. Wasting time. So many years wasted. When can I finally live again? My joints will continue deteriorating for the rest of my life. I just want to get my head fixed while I've still got some life left to live.
What a waste! I wish this didn't all take so long. I wish I could have had all of my traumatic surgeries very close together. Then, spent a couple years recovering {which is how long it takes with POTS}. Instead of wasting so many years between surgeries. I want a life.
Sorry for complaining. I know it could be so much worse. But the headache pain, all-over pain, nausea, weakness, fatigue, and general sickness make me pretty crabby and miserable.
Sunday, November 1, 2009
Lost time...
The Forteo shots are going well. The needle is the tiniest thing I've ever seen. And it comes pre-dosed in a pen, so it's really easy to use. The medicine doesn't seem to effect me at all, either. So that's good. This medicine is the very best medicine for increasing bone mass, which is what I need. Just wishing every moment that I'd been able to start this medication when I first went to an endocrinologist for Osteopenia in August 2008. Those 15, yes FIFTEEN months of my life have been wasting time (at least medically). And more than that, I'm still waiting on the surgery to revise the surgery I had in 2003. Yes. 2003, as in the year after high school. Now, I expect the surgery in 2010. Seven, yes SEVEN years after my cranio-cervical fusion was done "inadequately." After seven years, I expect to finally have my revision done, and done right. Maybe even feel a little better and get back to LIVING my life, instead of watching life pass me by.
In the meantime, I have a new massage therapist who is great. As always, I need a massage on a daily basis (if not more), but I'll have to settle for every other week for now.
Also, I found out that my vitamin D levels are in the range of Toxicity. That means I'm taking too much vitamin D. I guess this proves the existence of "too much of a good thing." Vitamin D Toxicity causes the following symptoms:
-Nausea
-Poor appetite
-Constipation
-Weakness
-Confusion
-Heart rate abnormalities
Obviously, I wouldn't have noticed those symptoms. I have those all the time anyway.
So, we're decreasing, but not stopping my dose of vitamin D. I'll stop taking the extra daily vitamin D, however I will still get it in my Citracal every day. I will decrease my megadose of vitamin D to once every 2 weeks, instead of once a week. So, my level should gradually decrease. But I am not to decrease my calcium, or discontinue anything. I guess this happens when you only have bloodwork done every 6 months.
My pain management neurologist is trying me on some new meds. Axert and Topomax. He also did some nerve blocks over my eyes. Didn't help much. I'll write if the meds help. He's decided that I have Chronic Daily Migraine...basically I wake up with a migraine every morning. I have a migraine of varying degrees all day every day. I go to sleep with a migraine every night. And my migraine is there all night long, too! Constant Migraine. That's a nice name for it. Sounds like my life.
Whatever. I hate all of this patience. It makes me very angry to have to be so patient. I've had to go to the psychiatrist recently, because the amount of anger inside just swells up and becomes unbearable at times. I don't think patience actually exists. It's just being willing to hide your impatience. More than that, you are considered patient if you are in a situation that forces you to wait. When you are forced to wait, you seem patient. It's kind of like courage, I guess. If you are forced to endure difficult things, you seem courageous. But really, you're not patient or courageous. You are just in a difficult situation that drags on endlessly.
So many people simply do not understand invisible chronic illness and invisible chronic pain. (Chronic=Constant) When you try to seem happy and cheerful, but you are actually in constant pain and frustration, you have to explode every now and then. Being sick makes me seem like a crappy person. I seem to be careless toward others, a bad friend, and really, really lazy. When actually I'm doing the very best I can to be a good person and make others happy. I'm just really, really bad at it! I seem lazy, because I can't get my own meals; I can't wash myself daily; and I can't earn an income. Even though it sometimes appears that I would be capable of doing these things.
Whatever. My head and neck hurt. I'm gonna lie down and forget about the world. Don't care if it seems selfish. That's how much it hurts.
In the meantime, I have a new massage therapist who is great. As always, I need a massage on a daily basis (if not more), but I'll have to settle for every other week for now.
Also, I found out that my vitamin D levels are in the range of Toxicity. That means I'm taking too much vitamin D. I guess this proves the existence of "too much of a good thing." Vitamin D Toxicity causes the following symptoms:
-Nausea
-Poor appetite
-Constipation
-Weakness
-Confusion
-Heart rate abnormalities
Obviously, I wouldn't have noticed those symptoms. I have those all the time anyway.
So, we're decreasing, but not stopping my dose of vitamin D. I'll stop taking the extra daily vitamin D, however I will still get it in my Citracal every day. I will decrease my megadose of vitamin D to once every 2 weeks, instead of once a week. So, my level should gradually decrease. But I am not to decrease my calcium, or discontinue anything. I guess this happens when you only have bloodwork done every 6 months.
My pain management neurologist is trying me on some new meds. Axert and Topomax. He also did some nerve blocks over my eyes. Didn't help much. I'll write if the meds help. He's decided that I have Chronic Daily Migraine...basically I wake up with a migraine every morning. I have a migraine of varying degrees all day every day. I go to sleep with a migraine every night. And my migraine is there all night long, too! Constant Migraine. That's a nice name for it. Sounds like my life.
Whatever. I hate all of this patience. It makes me very angry to have to be so patient. I've had to go to the psychiatrist recently, because the amount of anger inside just swells up and becomes unbearable at times. I don't think patience actually exists. It's just being willing to hide your impatience. More than that, you are considered patient if you are in a situation that forces you to wait. When you are forced to wait, you seem patient. It's kind of like courage, I guess. If you are forced to endure difficult things, you seem courageous. But really, you're not patient or courageous. You are just in a difficult situation that drags on endlessly.
So many people simply do not understand invisible chronic illness and invisible chronic pain. (Chronic=Constant) When you try to seem happy and cheerful, but you are actually in constant pain and frustration, you have to explode every now and then. Being sick makes me seem like a crappy person. I seem to be careless toward others, a bad friend, and really, really lazy. When actually I'm doing the very best I can to be a good person and make others happy. I'm just really, really bad at it! I seem lazy, because I can't get my own meals; I can't wash myself daily; and I can't earn an income. Even though it sometimes appears that I would be capable of doing these things.
Whatever. My head and neck hurt. I'm gonna lie down and forget about the world. Don't care if it seems selfish. That's how much it hurts.
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