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 exist. 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 exist. 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.
Monday, October 26, 2009
FORTEO. FINALLY!!!
Because it is not the FDA approved use of the medicine, I cannot say which doctor I saw today. He/she would like his/her identity protected. I was told this was an exception that was made.
Anyway, the doctor I saw today said that my urine Calcium done last May was low, so I will up my Calcium dose. However, since there may be something else causing this (like EDS-related absorption problems), the doctor finally agreed to prescribe Forteo!!!!! Forteo is a daily injection that you do yourself. It is the only medication proven to regrow bone. I have been prescribed a 6 month course. (The usual is 2 years.) This doctor has agreed that after 4 months of treatment, my bones should be showing improvement. So my DEXA has been pushed back to February 22, 2010.
Is this a good thing? In general, YES. I've been waiting for this medication for so long. And now I have it. Problem: Why did I have to wait so freaking long to get it? Another problem: This means that surgery is at least postponed another couple of months. I can't expect to have surgery before March at this point.
The medication itself seems pretty easy. It's made into a Pen. The medication has to be refrigerated. The pen measure the dose for you. You just insert the needle in an area that has at least 1 inch of fat (which is, evidently, my entire body!), and inject the medicine. The needle is so tiny, you really don't feel it going in! I mean it! I was a little disappointed. You know how much I love needles and blood! (Seriously, I love needles. Not sarcasm.) I took my first dose this afternoon, and fell into a very deep sleep. So I will be taking it at bedtime from now on. Another common side effect is dizziness, but I haven't noticed that. Other symptoms to look out for are muscle cramps and growing pains in the bones. So far, I think it's a great sedative for nighttime. No real complaints as of yet.
I just really wish I could have gotten this prescribed sooner, so I could be scheduling surgery for immediately after the holiday season. At least now, I can be sure that my DEXA test results will definitely improve next time, so I will be approved for surgery in the spring.
My main concern: I was expecting surgery in early January, so I didn't feel so bad stopping work 2 months before then. However, if I have 5 months to wait until surgery, I cannot be completely without income during that time. But how do you tell your piano students that you would like to try teaching for a few more months? I don't want them to think I'm messing around. I just need to make my life as useful as I can.
This doctor finally agreed to prescribe this medication, because my condition is finally pathetic enough to warrant drastic treatment (haha, like this medication is so drastic!) The thing is, my condition has been steadily worsening for a long time now. All information told me that this would happen. Why do the doctors have to WAIT until you hit rock bottom? Why won't they take you seriously until your condition is truly desperate? And why does New York insist on me becoming essentially bedridden before they'll perform surgery? We know I need the surgery. I am prepared for the challenges of recovery. But they're making me wait and wait and wait before they will do it.
Perhaps, I will write to my nurse at The Chiari Institute, and inform her that I have started Forteo. I can also inform her of how desperate my situation is. Maybe there could be some kind of lenience.
For tonight, I have a migraine that is reaching an 8, 8.5, so I will try to go to sleep. Of course, I wish I could exercise so I wouldn't have such a high body fat percentage. I hate being too sick to exercise. It drives me crazy. I'm one of those weirdos that actually enjoys going to the gym. It makes me feel good. (Not during, but after...I do have POTS, after all=exercise intolerance.) But I do miss getting a good workout and being proud to be able to keep my body healthy that way. I burn very few calories laying around all day. But my body doesn't want to allow me to be upright at all. Ahh...approaching a 9 on the pain scale. I guess I'll try to sleep.
Anyway, the doctor I saw today said that my urine Calcium done last May was low, so I will up my Calcium dose. However, since there may be something else causing this (like EDS-related absorption problems), the doctor finally agreed to prescribe Forteo!!!!! Forteo is a daily injection that you do yourself. It is the only medication proven to regrow bone. I have been prescribed a 6 month course. (The usual is 2 years.) This doctor has agreed that after 4 months of treatment, my bones should be showing improvement. So my DEXA has been pushed back to February 22, 2010.
Is this a good thing? In general, YES. I've been waiting for this medication for so long. And now I have it. Problem: Why did I have to wait so freaking long to get it? Another problem: This means that surgery is at least postponed another couple of months. I can't expect to have surgery before March at this point.
The medication itself seems pretty easy. It's made into a Pen. The medication has to be refrigerated. The pen measure the dose for you. You just insert the needle in an area that has at least 1 inch of fat (which is, evidently, my entire body!), and inject the medicine. The needle is so tiny, you really don't feel it going in! I mean it! I was a little disappointed. You know how much I love needles and blood! (Seriously, I love needles. Not sarcasm.) I took my first dose this afternoon, and fell into a very deep sleep. So I will be taking it at bedtime from now on. Another common side effect is dizziness, but I haven't noticed that. Other symptoms to look out for are muscle cramps and growing pains in the bones. So far, I think it's a great sedative for nighttime. No real complaints as of yet.
I just really wish I could have gotten this prescribed sooner, so I could be scheduling surgery for immediately after the holiday season. At least now, I can be sure that my DEXA test results will definitely improve next time, so I will be approved for surgery in the spring.
My main concern: I was expecting surgery in early January, so I didn't feel so bad stopping work 2 months before then. However, if I have 5 months to wait until surgery, I cannot be completely without income during that time. But how do you tell your piano students that you would like to try teaching for a few more months? I don't want them to think I'm messing around. I just need to make my life as useful as I can.
This doctor finally agreed to prescribe this medication, because my condition is finally pathetic enough to warrant drastic treatment (haha, like this medication is so drastic!) The thing is, my condition has been steadily worsening for a long time now. All information told me that this would happen. Why do the doctors have to WAIT until you hit rock bottom? Why won't they take you seriously until your condition is truly desperate? And why does New York insist on me becoming essentially bedridden before they'll perform surgery? We know I need the surgery. I am prepared for the challenges of recovery. But they're making me wait and wait and wait before they will do it.
Perhaps, I will write to my nurse at The Chiari Institute, and inform her that I have started Forteo. I can also inform her of how desperate my situation is. Maybe there could be some kind of lenience.
For tonight, I have a migraine that is reaching an 8, 8.5, so I will try to go to sleep. Of course, I wish I could exercise so I wouldn't have such a high body fat percentage. I hate being too sick to exercise. It drives me crazy. I'm one of those weirdos that actually enjoys going to the gym. It makes me feel good. (Not during, but after...I do have POTS, after all=exercise intolerance.) But I do miss getting a good workout and being proud to be able to keep my body healthy that way. I burn very few calories laying around all day. But my body doesn't want to allow me to be upright at all. Ahh...approaching a 9 on the pain scale. I guess I'll try to sleep.
Sunday, October 25, 2009
Nervous...
Lots of pain. Very few coherent thoughts. So tired.
I hope to schedule the bone scan for some day this week, to keep things moving. I expect that the bone scan will reflect the improved blood numbers, by showing much denser bones. This will get me approved for surgery a.s.a.p. I'm feeling as optimistic as I can about this. I'll post as soon as I get results.
I hope to schedule the bone scan for some day this week, to keep things moving. I expect that the bone scan will reflect the improved blood numbers, by showing much denser bones. This will get me approved for surgery a.s.a.p. I'm feeling as optimistic as I can about this. I'll post as soon as I get results.
Saturday, October 24, 2009
The Higher You Fly, the Harder You Fall
If your body is telling you that you should stay in bed and do nothing, and you choose not to listen...If you take stimulants to make you seem awake and opioids to mask the pain...you will always, always pay. I've used stimulants and opioids to try to defy my body for too long. And the costs are too great. There is always a downfall. Always some level of withdrawal. And your body keeps track of what you stole from it. You will always pay for every minute of borrowed time. You will pay with pain, fatigue, and distress. I wonder if I will ever catch up, if I will ever make up for the time I stole. For so long, I've tricked my body into doing things it wasn't able to do. And now it has shut down. And it tortures me with pain and sickness. I don't know how I'll survive sometimes.
Get me to a freaking neurosurgeon. Cut me open. Rip out my titanium. Give me new rods. Make me new. I don't care what it takes. I don't care how much it hurts to get there. I can't live like this anymore. Just make this end. How will it ever end? I don't know how to go on like this.
Get me to a freaking neurosurgeon. Cut me open. Rip out my titanium. Give me new rods. Make me new. I don't care what it takes. I don't care how much it hurts to get there. I can't live like this anymore. Just make this end. How will it ever end? I don't know how to go on like this.
Tuesday, October 20, 2009
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