Sunday, December 12, 2004
browser life since Hawaii....
I'm embarrassed at how much time has passed since my last entry. I've actually been too ill to keep up with this, and then my friends began to worry, and then I began having to e-mail them updates, and part of the reason for this blog was to keep everyone up to date on what's up. Sigh. It's sort of like keeping the house clean....if you tidy up one little thing per day, you never fall very far behind. But right now my life looks like a hurricane's been through it.
The really crummy thing is that my memory is so awful that I can barely remember what I had for lunch yesterday, let alone what I did in October or even November. When I don't write things down, I tend to space them out completely. And then I'll go to a doc who asks when it was I had a certain symptom or saw a certain specialist, and I'll have no clue because I never got it in print.
So I'll do a large post here to attempt to catch up a bit, and then I'll endeavor to do small but frequent entries in the future no matter how shitty I feel. It's always a boost to my mental well-being anyway when I have an outlet of some kind. And right now I need as much boosting as I can get.
Ok, I got back from vacation October 14. I think it was the next week when the guy who did my neuropsyche exam calls me to tell me the results. They did pick up on some slowing of mental processing speed that was inconsistent with my general intelliegence level. And I showed noticeable disruption of my thought process. But my problem solving skills were intact. So far, we're on the same page. But then he starts telling me all these pyschological problems I manifested via the "personality" test, the one I hate because it leaves no possiblity of a physical cause for some of your responses. I am told I am defensive, obsessed with my health and reluctant to acknowledge that I possess any faults (perhaps they should read this blog?). It is suggested that I am secretly depressed; the term "somatoform disorder" actually came up. I am furthermore told that I should seek therapy to learn to acknowledge that psychological stress is causing my physical problems! My cognitive dysfunction is explained away as resulting from poor sleep. I am told to get off of Ambien because it obviously isn't helping and to get a sleep study because I probably have sleep apnea.
Yikes! And here I was thinking it was a GOOD thing that I decided a few years ago that I didn't possess the energy to let the little things get to me. I acknowledge something, and then I let it go, not because I'm in denial, but because it is too exhausting to worry. I feel like someone just patted me on the head again and said, "Poor dear, you're just depressed"! That's the same bull I heard that got me into this mess 8 years ago, when I was told an anti-depressant would make me all better. That little pill changed my life, all right.....it gave me insomnia and muscle spasms that progressed to fibromyalgia and the assorted other ailments that followed.
So here I am with this glaring report having to go back to the neurologist who didn't quite know what to do with me. I mentioned the psychological counseling, and her response was, "couldn't hurt". Hmmm. So I promised to look into it, not because I agree with the report, but more to prove the report wrong. And because I'm on the verge of permanent disability, which even I will acknowledge as stressful. I've asked a few docs since if they could refer me to a clinical psychologist, but none had any names of someone who specialized in patients with chronic illness. I will get around to finding one on my own eventually, but right now there is too much else going on.
The neurologist had a similar response to my inquiries about repeating the sleep study I had five years ago which showed mild sleep apnea and zero Stage 4 sleep (I later had sinus surgery that I am convinced cured me of the apnea). She gave me the name of someone to call about that, and I made an appointment with a sleep specialist. To my surprise, after the specialist inquired about the intensity of my daytime sleepiness, she not only suggested a sleep study, but that I also do a sleep latency test to check for narcolepsy! Both tests are to be done back to back over a 24 hour period starting next Sunday night (the 19th).
I had a sudden worsening of reflux symptoms sometime after I saw the neurologist. I could hardly eat and was so nauseous that nothing wanted to stay down. The gastroenterologist repeated the barium swallow I had last year and confirmed it was just reflux. I was told there was nothing more I could do that I wasn't already doing. It did improve a bit after a few weeks, but by and large, I just try to ignore it.
I had an appointment in late October with a rheumatologist who was a Sjogren's expert to get a second opinion on my treatment options, but four hours before the appointment, his office called and said I'd have to re-schedule! The next available appointment wasn't for another month! Why is it that a doc's office can do that, but if I tried it, I'd be fined for a missed visit?? Anyway, even after I got to the re-scheduled appointment, I waited TWO AND A HALF hours in that office before I saw the doc! By then, it was nearly closing time, so everything was so rushed it was just a blur. The only comprehensible things I got out of that appointment were that I needed a bunch more tests, that I should come back in another month, and that most of his patients who had Sjogren's symptoms similar to mine were made sicker by working and had to go on permanent disability. One very useful thing did happen, though: he looked at the amount of thyroid medicine I was taking and walked right over and examined my thyroid. He asked how long it had been swollen. I told him three years. He asked when was the last ultrasound I'd had done on it, and I said never. He said that would be the first test he would arrange.
True to his word, I had a thyroid ultrasound a few days before Thanksgiving. I didn't hear anything back for a few weeks, so I figured everything must have been fine. But then I got a call from the rheumatologist's office saying that the scans showed two nodules, one of them quite large, and they recommended that I see an endocrinologist about it. I found one and got in pretty quickly: last Thursday, in fact. She looked everything over and said I should have a biopsy of the thyroid to make sure the large nodule wasn't cancerous. I have one scheduled for this coming Thursday; they'll have to use another ultrasound to make sure they get the needle in the right place because I have several swollen lymph nodes in my neck on that side. The endocrinologist also wants me to do a fasting glucose tolerance test to make sure I'm not diabetic. I'll probably set that up tomorrow.
That's the extremely short version of everything. There is of course much much more going on than that, but my hands will not endure much more typing right now. I'll try to pop in on a regular basis with updates, especially on some positive stuff.
Pain level: 7
Fatigue level: 8
The really crummy thing is that my memory is so awful that I can barely remember what I had for lunch yesterday, let alone what I did in October or even November. When I don't write things down, I tend to space them out completely. And then I'll go to a doc who asks when it was I had a certain symptom or saw a certain specialist, and I'll have no clue because I never got it in print.
So I'll do a large post here to attempt to catch up a bit, and then I'll endeavor to do small but frequent entries in the future no matter how shitty I feel. It's always a boost to my mental well-being anyway when I have an outlet of some kind. And right now I need as much boosting as I can get.
Ok, I got back from vacation October 14. I think it was the next week when the guy who did my neuropsyche exam calls me to tell me the results. They did pick up on some slowing of mental processing speed that was inconsistent with my general intelliegence level. And I showed noticeable disruption of my thought process. But my problem solving skills were intact. So far, we're on the same page. But then he starts telling me all these pyschological problems I manifested via the "personality" test, the one I hate because it leaves no possiblity of a physical cause for some of your responses. I am told I am defensive, obsessed with my health and reluctant to acknowledge that I possess any faults (perhaps they should read this blog?). It is suggested that I am secretly depressed; the term "somatoform disorder" actually came up. I am furthermore told that I should seek therapy to learn to acknowledge that psychological stress is causing my physical problems! My cognitive dysfunction is explained away as resulting from poor sleep. I am told to get off of Ambien because it obviously isn't helping and to get a sleep study because I probably have sleep apnea.
Yikes! And here I was thinking it was a GOOD thing that I decided a few years ago that I didn't possess the energy to let the little things get to me. I acknowledge something, and then I let it go, not because I'm in denial, but because it is too exhausting to worry. I feel like someone just patted me on the head again and said, "Poor dear, you're just depressed"! That's the same bull I heard that got me into this mess 8 years ago, when I was told an anti-depressant would make me all better. That little pill changed my life, all right.....it gave me insomnia and muscle spasms that progressed to fibromyalgia and the assorted other ailments that followed.
So here I am with this glaring report having to go back to the neurologist who didn't quite know what to do with me. I mentioned the psychological counseling, and her response was, "couldn't hurt". Hmmm. So I promised to look into it, not because I agree with the report, but more to prove the report wrong. And because I'm on the verge of permanent disability, which even I will acknowledge as stressful. I've asked a few docs since if they could refer me to a clinical psychologist, but none had any names of someone who specialized in patients with chronic illness. I will get around to finding one on my own eventually, but right now there is too much else going on.
The neurologist had a similar response to my inquiries about repeating the sleep study I had five years ago which showed mild sleep apnea and zero Stage 4 sleep (I later had sinus surgery that I am convinced cured me of the apnea). She gave me the name of someone to call about that, and I made an appointment with a sleep specialist. To my surprise, after the specialist inquired about the intensity of my daytime sleepiness, she not only suggested a sleep study, but that I also do a sleep latency test to check for narcolepsy! Both tests are to be done back to back over a 24 hour period starting next Sunday night (the 19th).
I had a sudden worsening of reflux symptoms sometime after I saw the neurologist. I could hardly eat and was so nauseous that nothing wanted to stay down. The gastroenterologist repeated the barium swallow I had last year and confirmed it was just reflux. I was told there was nothing more I could do that I wasn't already doing. It did improve a bit after a few weeks, but by and large, I just try to ignore it.
I had an appointment in late October with a rheumatologist who was a Sjogren's expert to get a second opinion on my treatment options, but four hours before the appointment, his office called and said I'd have to re-schedule! The next available appointment wasn't for another month! Why is it that a doc's office can do that, but if I tried it, I'd be fined for a missed visit?? Anyway, even after I got to the re-scheduled appointment, I waited TWO AND A HALF hours in that office before I saw the doc! By then, it was nearly closing time, so everything was so rushed it was just a blur. The only comprehensible things I got out of that appointment were that I needed a bunch more tests, that I should come back in another month, and that most of his patients who had Sjogren's symptoms similar to mine were made sicker by working and had to go on permanent disability. One very useful thing did happen, though: he looked at the amount of thyroid medicine I was taking and walked right over and examined my thyroid. He asked how long it had been swollen. I told him three years. He asked when was the last ultrasound I'd had done on it, and I said never. He said that would be the first test he would arrange.
True to his word, I had a thyroid ultrasound a few days before Thanksgiving. I didn't hear anything back for a few weeks, so I figured everything must have been fine. But then I got a call from the rheumatologist's office saying that the scans showed two nodules, one of them quite large, and they recommended that I see an endocrinologist about it. I found one and got in pretty quickly: last Thursday, in fact. She looked everything over and said I should have a biopsy of the thyroid to make sure the large nodule wasn't cancerous. I have one scheduled for this coming Thursday; they'll have to use another ultrasound to make sure they get the needle in the right place because I have several swollen lymph nodes in my neck on that side. The endocrinologist also wants me to do a fasting glucose tolerance test to make sure I'm not diabetic. I'll probably set that up tomorrow.
That's the extremely short version of everything. There is of course much much more going on than that, but my hands will not endure much more typing right now. I'll try to pop in on a regular basis with updates, especially on some positive stuff.
Pain level: 7
Fatigue level: 8
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