Well, things have been getting worse. I guess that's the only way to put it. I've just definitely been feeling worse and worse and able to function less and less. I'm needing to spend a good part of my morning and afternoon in bed on an average day. That's made shopping and enjoying my break so hard, because I feel so awful all the time, and I haven't been able to get out to do anything. So I apologize in advance for the gifts this year. I guess I couldn't afford much of anything anyhow. So, poor Gus has been doing all of the cooking and dishes and errands while I rest and try to keep surviving. But at times, my resolve has gotten weaker. I've definitely begun to wonder how I will continue working in the state I'm in. Frankly, I don't think it's a very good idea. My body is screaming out for more and more rest. When I take pills to avoid that rest, it only feels worse later. It's just so miserable. It feels a lot like before my first fusion, as things were getting worse. I'm suffering from instability symptoms almost constantly. At this rate, it won't be long before I can't drive, can't work, can't function. I would lose everything. I'm so scared. I'm not being negative. This is not pessimistic thinking. I'm just facing facts. I've been through this before. I know where this leads.
I hope this next surgery really lasts. What if my stupid connective tissue just keeps sagging out of whatever position it is set in? I just need it to be soon, before I lose everything. People are counting on me. I can't stand to let everyone down...again.
Living with chronic illness - Mast Cell Activation Syndrome - Chemical Sensitivity - Chronic Intractable Migraine - Ehlers Danlos Syndrome - Dysautonomia - Chiari Malformation - Cranio-cervical Instability - Functional cranial settling - Cranio-Cervical Fusions - Retroflexed Odontoid - Occult Tethered Cord
Monday, December 22, 2008
Monday, December 8, 2008
Good News Day!!!
Today was the day for good news.
#1 I got in touch with Dr. Shah's office. My glycohemoglobin test came back perfectly normal. No diabetes, no prediabetes, no change in diet needed. Perfect!!!
#2 I saw Dr. Camacho at Loyola. She told me that I have SECONDARY hyperparathyroidism causing my osteopenia. The raised parathyroid levels are due to a Vitamin D deficiency. The treatment is a megadose of Vitamin D once a week (50,000 IU's- The normal dose is closer to 500 iu's). She expects this once a week treatment to improve my bone density in several months. She expects symptoms like achyness, soreness, bone and joint pain, fatigue, and depression to all begin to ease after approximately 4 weeks of treatment. There is nothing wrong with the parathyroid gland itself, so nothing more needs to be done. Just start taking the megadose of vitamin D and have my urine/blood/bone tests again in April.
So, thank God for good news.
I am very tired with a great deal of pain tonight (about a 7 right now), so I'm going to rest and try to enjoy the good news.
#1 I got in touch with Dr. Shah's office. My glycohemoglobin test came back perfectly normal. No diabetes, no prediabetes, no change in diet needed. Perfect!!!
#2 I saw Dr. Camacho at Loyola. She told me that I have SECONDARY hyperparathyroidism causing my osteopenia. The raised parathyroid levels are due to a Vitamin D deficiency. The treatment is a megadose of Vitamin D once a week (50,000 IU's- The normal dose is closer to 500 iu's). She expects this once a week treatment to improve my bone density in several months. She expects symptoms like achyness, soreness, bone and joint pain, fatigue, and depression to all begin to ease after approximately 4 weeks of treatment. There is nothing wrong with the parathyroid gland itself, so nothing more needs to be done. Just start taking the megadose of vitamin D and have my urine/blood/bone tests again in April.
So, thank God for good news.
I am very tired with a great deal of pain tonight (about a 7 right now), so I'm going to rest and try to enjoy the good news.
Sunday, December 7, 2008
Quick update
The only thing I have to add is that I think a recent raising of my Cymbalta dose is responsible for my recent jitters and sleeplessness. So hopefully, by returning to my old dose, I'll be able to get more sleep again.
However, it's interesting to add that my gag reflex seems to be completely gone again, which has brought back the choking problems fully. Also, there's the frequent, painful hiccups that have returned. Both of these are a sign of brainstem dysfunction, from my cranio-cervical instability.
That's all for now. Everyone hope that Gus makes it through his final exam on psychopathology tomorrow!
However, it's interesting to add that my gag reflex seems to be completely gone again, which has brought back the choking problems fully. Also, there's the frequent, painful hiccups that have returned. Both of these are a sign of brainstem dysfunction, from my cranio-cervical instability.
That's all for now. Everyone hope that Gus makes it through his final exam on psychopathology tomorrow!
Saturday, December 6, 2008
Random extras
I have a bunch of little things going on.
1) I know that my new medication, Neptazane, is responsible for the new tingling in my hands and feet, and I need to email my TCI nurse about this, because it could be the sign of a more serious side effect.
2) I had a very high non-fasting glucose reading, combined with a low CO2 reading, leading my doctor to do a glycohemoglobin test, which is an initial test for diabetes. This was done Tuesday, and I waited to hear of the results all week, but I guess I'll wait a little longer. This could potentially be a new diagnosis. UGH!!!
3) I've developed insomnia recently. For about 5 weeks, I've awoken in the middle of the night and not been able to get back to sleep without Klonopin. This week, the Klonopin hasn't even helped. Last night, I tried a Valium, which normally knocks me out. I was WIDE AWAKE all night. Normally, I can't even function on Valium. Last night, I stayed awake reading my book all night!!! I was sure it had to be caused by a medication, but the only new medication is Neptazane, which does not have insomnia as a side effect. So, I have no idea what's going wrong with me. But certainly, the insomnia is contributing to my worsening fatigue. Which leads us to:
4) Worsening fatigue: I've pretty much been sleeping all day until it's time to get ready for work around 2:30, and I'm practically falling asleep at work and driving and wherever I go. I wonder if I should have a new sleep study, like the last time I had such narcolepsy.
That's all, except for an extra thank you to everyone in my life who helps me through these ridiculous problems.
1) I know that my new medication, Neptazane, is responsible for the new tingling in my hands and feet, and I need to email my TCI nurse about this, because it could be the sign of a more serious side effect.
2) I had a very high non-fasting glucose reading, combined with a low CO2 reading, leading my doctor to do a glycohemoglobin test, which is an initial test for diabetes. This was done Tuesday, and I waited to hear of the results all week, but I guess I'll wait a little longer. This could potentially be a new diagnosis. UGH!!!
3) I've developed insomnia recently. For about 5 weeks, I've awoken in the middle of the night and not been able to get back to sleep without Klonopin. This week, the Klonopin hasn't even helped. Last night, I tried a Valium, which normally knocks me out. I was WIDE AWAKE all night. Normally, I can't even function on Valium. Last night, I stayed awake reading my book all night!!! I was sure it had to be caused by a medication, but the only new medication is Neptazane, which does not have insomnia as a side effect. So, I have no idea what's going wrong with me. But certainly, the insomnia is contributing to my worsening fatigue. Which leads us to:
4) Worsening fatigue: I've pretty much been sleeping all day until it's time to get ready for work around 2:30, and I'm practically falling asleep at work and driving and wherever I go. I wonder if I should have a new sleep study, like the last time I had such narcolepsy.
That's all, except for an extra thank you to everyone in my life who helps me through these ridiculous problems.
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