Thursday, March 01, 2007
It happened AGAIN!
WARNING: This post is gonna contain profanity! I am too upset to be polite on my own blog. I am at my wit's end here.
I went to the new rheumatologist yesterday. I made sure I had made a copy of ALL tests, procedures, previous rheumatologist office notes etc. as requested and hand delivered them to the office the day before. At the top of the pile was my lip biopsy report so there would be no doubt as to its existence.
It was an early morning appointment, and I was extra fibro-fogged and extremely nauseous, but I didn't think it would be a problem as maybe this time the extent of my fatigue would be apparent. But it turned out to not be a factor whatsoever as practically the first words out of this doc's mouth were: "So, what makes you think you have Sjogren's?" I replied, "Umm, the lip biopsy report's right in front of you!"
She glanced at it briefly, sniffed and said, "This isn't diagnostic enough. It doesn't describe the lymphocytes except to say they exceed fifty in number. You should have it done again." My jaw dropped to the floor! Lip biopsies are generally only done as a last resort as they are invasive and carry a risk of permanent nerve damage to the face; they are NOT something to do on a whim!
She then asked why my ENT decided to do one even though my bloodwork had been normal. I described to her the chronic fungal infections and dryness in my sinuses, the signs of extreme dryness of my mouth and tongue, the chronic lesions, the problems swallowing. She was not impressed and stated that lots of things cause dry mouth.
After that, the doc asked why I thought I had Reynaud's. I tried my best to describe it to her. She actually did take note of it.
She wanted to know what hurt the worst. My fibro-fog was kicking my butt, and after I mentioned that I pretty much hurt everywhere, I fumbled some reply about low back and feet. I know I should have told her about the joint pain and stiffness, but I don't think she would have believed me anyway as the anti-inflammatory I'm on reduces these symptoms so that they are less obvious.
She then began the physical exam. She wanted me to tell her when somethng hurt, but she was also asking me questions while she was poking me and flexing me in all sorts of directions. I would start to answer her, and then whenever something was incredibly painful, which was every few seconds, my brain would completely go blank, and all I could do was wince or shout, and I finally told her that I could not converse and be poked at the same time.
Finally, stopped whacking and bending me and cheerfully pronounced that I had all 18 fibromyalgia tender points. I gently replied that, yes, I'd had them for at least seven years. She then launched into a standard speech about what fibromyalgia was, not a word of which was news to me.
But she went further and claimed that all the symptoms I was attributing to Sjogren's were probably caused by fibromyalgia and that's all that was wrong with me. Flabbergasted, I asked her if she was telling me that fibromyalgia causes gastroparesis. She hesitated and then said, "Well, not typically."
She went on to inform me that all I really needed to do to get better was to engage in 30 minutes of cardiovascular exercise per day, that the aquacise I've been doing the past three years was no good because I wasn't increasing my heart rate enough. She saw I was going to protest this and stopped me by clucking at me in a disapproving tone, "All fibromyalgia patients claim they can't exercise, but that's only because they are severely deconditioned and won't do anything that hurts. All the studies have shown that exercise is what works." I tried telling her that while I had been capable of that amount of exercise five years ago and in fact did exactly that, it was no longer possible due to ever increasing fatigue, but she told me I must not really be trying!!
She repeated that I really should have the lip biopsy done over again. I informed her that I had been on anti-inflammatories and immuno-modulators for four years and asked her if that wouldn't affect the results of a new biopsy. She conceded that it might and said that she'd put it off for now.
She then ordered bloodwork that I had done just last month and said I should come back in six months. She said that since I only had fibromyalgia, I shouldn't really need the Salagen, the Mobic and the Plaquenil, but she wrote me new scripts anyway, which puzzled the crap out of me. After all, none of those meds would be a great deal of help for a fibromyalgia patient unless they ALSO had something else!
The bottom line is I'm screwed. I have no other options as I have been to the only two rheumatologist offices in Sioux Falls. I never expected to have to PROVE I have an ailment that was diagnosed without question four years ago.
I wouldn't give a flying rat's ass what I was diagnosed with or what type of doc I saw if I was still productive and able to work. But SSDI makes a big deal out of diagnoses and is very particular about documentation by the "proper" specialist. And my long-term disability insurance company considers fibromyalgia to be a mental, not physical illness and subject to benefit termination in the absence of documentation about something they can't easily deny like a verifiable autoimmune disease.
So I can't easily blow off these idiot rheumatologists. I cannot understand why they won't believe the doctors I had in Denver! I would just skip these morons and go straight on over to someone reputable in Minneapolis, but my insurance absolutely won't cover it, and Dan wouldn't be able to spare the time off work to drive me five plus hours each way anyway.
I don't know what the hell to do. Without the cooperation of a knowledgeable rheumatologist, my financial future is doomed. If I lose disability benefits, Dan and I will lose the new house and probably everything else we barely managed to salvage.
I am furious that incompetent doctors have this sort of power to wreck my life. I'm not expecting them to perform any sort of miracle; I just want them to look at the records of the last seven years of treatment and continue to treat what has already been diagnosed. I have absolutely no reason to doubt that I have both fibromyalgia and Sjogren's syndrome, and I deserve to be taken seriously.
There's a lot more ranting I want to do, but as what I've already said has exhausted me, it would be counter productive. Besides, I'm supposed to be out jogging or something right?
As Nixon said, I am not a crook.
I went to the new rheumatologist yesterday. I made sure I had made a copy of ALL tests, procedures, previous rheumatologist office notes etc. as requested and hand delivered them to the office the day before. At the top of the pile was my lip biopsy report so there would be no doubt as to its existence.
It was an early morning appointment, and I was extra fibro-fogged and extremely nauseous, but I didn't think it would be a problem as maybe this time the extent of my fatigue would be apparent. But it turned out to not be a factor whatsoever as practically the first words out of this doc's mouth were: "So, what makes you think you have Sjogren's?" I replied, "Umm, the lip biopsy report's right in front of you!"
She glanced at it briefly, sniffed and said, "This isn't diagnostic enough. It doesn't describe the lymphocytes except to say they exceed fifty in number. You should have it done again." My jaw dropped to the floor! Lip biopsies are generally only done as a last resort as they are invasive and carry a risk of permanent nerve damage to the face; they are NOT something to do on a whim!
She then asked why my ENT decided to do one even though my bloodwork had been normal. I described to her the chronic fungal infections and dryness in my sinuses, the signs of extreme dryness of my mouth and tongue, the chronic lesions, the problems swallowing. She was not impressed and stated that lots of things cause dry mouth.
After that, the doc asked why I thought I had Reynaud's. I tried my best to describe it to her. She actually did take note of it.
She wanted to know what hurt the worst. My fibro-fog was kicking my butt, and after I mentioned that I pretty much hurt everywhere, I fumbled some reply about low back and feet. I know I should have told her about the joint pain and stiffness, but I don't think she would have believed me anyway as the anti-inflammatory I'm on reduces these symptoms so that they are less obvious.
She then began the physical exam. She wanted me to tell her when somethng hurt, but she was also asking me questions while she was poking me and flexing me in all sorts of directions. I would start to answer her, and then whenever something was incredibly painful, which was every few seconds, my brain would completely go blank, and all I could do was wince or shout, and I finally told her that I could not converse and be poked at the same time.
Finally, stopped whacking and bending me and cheerfully pronounced that I had all 18 fibromyalgia tender points. I gently replied that, yes, I'd had them for at least seven years. She then launched into a standard speech about what fibromyalgia was, not a word of which was news to me.
But she went further and claimed that all the symptoms I was attributing to Sjogren's were probably caused by fibromyalgia and that's all that was wrong with me. Flabbergasted, I asked her if she was telling me that fibromyalgia causes gastroparesis. She hesitated and then said, "Well, not typically."
She went on to inform me that all I really needed to do to get better was to engage in 30 minutes of cardiovascular exercise per day, that the aquacise I've been doing the past three years was no good because I wasn't increasing my heart rate enough. She saw I was going to protest this and stopped me by clucking at me in a disapproving tone, "All fibromyalgia patients claim they can't exercise, but that's only because they are severely deconditioned and won't do anything that hurts. All the studies have shown that exercise is what works." I tried telling her that while I had been capable of that amount of exercise five years ago and in fact did exactly that, it was no longer possible due to ever increasing fatigue, but she told me I must not really be trying!!
She repeated that I really should have the lip biopsy done over again. I informed her that I had been on anti-inflammatories and immuno-modulators for four years and asked her if that wouldn't affect the results of a new biopsy. She conceded that it might and said that she'd put it off for now.
She then ordered bloodwork that I had done just last month and said I should come back in six months. She said that since I only had fibromyalgia, I shouldn't really need the Salagen, the Mobic and the Plaquenil, but she wrote me new scripts anyway, which puzzled the crap out of me. After all, none of those meds would be a great deal of help for a fibromyalgia patient unless they ALSO had something else!
The bottom line is I'm screwed. I have no other options as I have been to the only two rheumatologist offices in Sioux Falls. I never expected to have to PROVE I have an ailment that was diagnosed without question four years ago.
I wouldn't give a flying rat's ass what I was diagnosed with or what type of doc I saw if I was still productive and able to work. But SSDI makes a big deal out of diagnoses and is very particular about documentation by the "proper" specialist. And my long-term disability insurance company considers fibromyalgia to be a mental, not physical illness and subject to benefit termination in the absence of documentation about something they can't easily deny like a verifiable autoimmune disease.
So I can't easily blow off these idiot rheumatologists. I cannot understand why they won't believe the doctors I had in Denver! I would just skip these morons and go straight on over to someone reputable in Minneapolis, but my insurance absolutely won't cover it, and Dan wouldn't be able to spare the time off work to drive me five plus hours each way anyway.
I don't know what the hell to do. Without the cooperation of a knowledgeable rheumatologist, my financial future is doomed. If I lose disability benefits, Dan and I will lose the new house and probably everything else we barely managed to salvage.
I am furious that incompetent doctors have this sort of power to wreck my life. I'm not expecting them to perform any sort of miracle; I just want them to look at the records of the last seven years of treatment and continue to treat what has already been diagnosed. I have absolutely no reason to doubt that I have both fibromyalgia and Sjogren's syndrome, and I deserve to be taken seriously.
There's a lot more ranting I want to do, but as what I've already said has exhausted me, it would be counter productive. Besides, I'm supposed to be out jogging or something right?
As Nixon said, I am not a crook.
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