Though I feel this is a bit oversimplified, I think it's an interesting article, especially the part about the allergies!
A New Fibromyalgia Remedy: Antiviral Drugs - US News and World Report
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Showing posts with label Fibromyalgia. Show all posts
Showing posts with label Fibromyalgia. Show all posts
Wednesday, April 21, 2010
Saturday, November 22, 2008
I Need YOUR Help
The long & the short of it:
I need to have some fairly expensive testing done to help the government understand why I can't work. I'm on my last appeal for Disability Insurance, and I can't afford to have to apply again (I already have to wait another year or so to wait for this appeal to be decided) and wait another 1-3 years to see if they decide to grant me something I'd hoped to be able to count on if I absolutely needed it, which I do. My health has gotten worse struggling while I try and see if it goes through. My credit is wrecked, I'm swamped in debt (mostly medical) and it's just luck that I didn't end up homeless.
As I've mentioned before, one of my biggest problems at this point is the Cognitive Dysfunction. It's so bad, I don't even like talking on the phone much anymore, because if it's flaring up, which happens sometimes even on otherwise good days, but is even worse if I'm not feeling well or I'm tired, then I end up going blank, or not being able to think of words, or keep ideas in my head until someone is finished talking, and I'm afraid I'll sound like a total idiot. In person, it's easy to see when I'm thinking hard, or confused, but on the phone, it's just like, uhh, what's YOUR deal?
This was also my biggest challenge when I was still working. I can't multi-task well anymore, couldn't remember things I needed to memorize, or people's faces I didn't see regularly for long periods of time, no matter how important they were. And I used to be great at my jobs, great at multi-tasking, great at all the details. (Temp agencies used to love me, I'd just dive right in, and I worked great under pressure. Not anymore...) The hugest stress, in that last 7 month period I worked, was trying to hide my memory issues from my co-workers, patrons, bosses, and anyone else I dealt with. I felt like a fraud in a way...Not the person on my resume, that's for sure!
It finally dawned on my a few months ago, that if I want the Social Security Administration to believe this, since it's just becoming legitimately clear and scientifically confirmed what a big impact FM & CFS can have on Cognitive Function (See my posts earlier this month on the subject) and they need everything spelled out and scientifically backed up, that I needed to get some Neurocognitive Testing done. I found someone who would do it, and she seemed to be qualified, informed and very competent, as well as willing to work with me and my attorney. She also agreed that things seemed pretty serious. Only one problem: my insurance won't cover it, because apparently it's "Diagnostic Testing", and for that I would have to meet my $2,000 deductible first. Ha! Fat chance. I have $1500 to go, and it starts over at $0 in January!
But I just can't take the chance of not having that testing done. The more I've thought about it, the more I realize that it is vital. Though I have some proof now that I have pretty serious chronic Enteroviral infections, well, I actually had that proof at my last appeal, but even though the titers were high enough that if they had been Epstein Barr my application would've had to have been automatically approved by law, either my attorney didn't emphasize this, or it didn't matter to the judge. I'm seeing a very well known Infectious Disease specialist at the moment, so that might bring more weight to that, but I can't afford to take any chances.
Plus, it's getting so bad lately, many days my brain feels like a cramped-up pretzel from just trying to get through a routine day, (remembering why I walked into this room and why I grabbed my purse, and why my hand is in it, whether or not I took my medications, ugh! )and I'm a little afraid it might be causing damage. (I've read studies indicating this.) But I won't be able to get further testing, or find anyone to try and treat the problem unless I have real proof that something is wrong. (Despite the studies being done, doctors just aren't informed. The doctor who was going to do the tests thought it sounded more like I had Multiple Scelerosis...but the fact is, the Cognitive Dysfunction w/my conditions is just as bad, it's just not as well known.)
Anyhow the doctor who was going to do the tests wanted a $150 deposit, and it sounded like it was going to cost AT LEAST $500+ out of pocket...depending on the amount of time, even up past the $1,000 mark. (Her rate was $200-$300/hour I believe, and it was going to take a couple of days, sounded like 2-3 hours each.)
So, I decided to go ahead and start accepting donations towards getting that testing done. It's not going to happen by itself, and the last couple of years I've spent on the verge of homelessness, I didn't really get many offers of help, and the current solution is only temporary, so if I don't get my case approved this time around, who knows what will happen to me.
I'm tired of living on the edge of ruin, all the stress is making me sicker as the years go by, and try as I might, despite constant brainstorming, I can't find a way to make ends meet.
So if I can do anything to avoid that scenario, I will. If some chick can get $20,000+ to pay off purses and shoe purchases, maybe it's not so bad for me to ask for help too.
And maybe it will help people realize that though they may not be AIDS or Cancer, and while we may not be outright dying from them, FM and CFS are two VERY SERIOUS, life-changing, and potentially devestating illnesses, and the number of people trying to deal with them is continuing to grow. Yeah, they're not deadly (usually) but the thing is, you have to go on living...and if you can't work, what do you do? Cognitive Dysfunction aside, my health is still pretty unpredictable. I never know when the Autonomic Nervous System stuff will act up, when my feet will hurt too much to stand more than 10 minutes, or any of the many other symptoms will get to be too much to work through reliably.
So if you have any change to spare, and I mean it, every cent will count; please click on the Donate button on the right sidebar. In exchange, I promise to keep bringing you interesting posts about stuff that might help you and yours :)
A million thanks.
Fibrogrrl
I need to have some fairly expensive testing done to help the government understand why I can't work. I'm on my last appeal for Disability Insurance, and I can't afford to have to apply again (I already have to wait another year or so to wait for this appeal to be decided) and wait another 1-3 years to see if they decide to grant me something I'd hoped to be able to count on if I absolutely needed it, which I do. My health has gotten worse struggling while I try and see if it goes through. My credit is wrecked, I'm swamped in debt (mostly medical) and it's just luck that I didn't end up homeless.
As I've mentioned before, one of my biggest problems at this point is the Cognitive Dysfunction. It's so bad, I don't even like talking on the phone much anymore, because if it's flaring up, which happens sometimes even on otherwise good days, but is even worse if I'm not feeling well or I'm tired, then I end up going blank, or not being able to think of words, or keep ideas in my head until someone is finished talking, and I'm afraid I'll sound like a total idiot. In person, it's easy to see when I'm thinking hard, or confused, but on the phone, it's just like, uhh, what's YOUR deal?
This was also my biggest challenge when I was still working. I can't multi-task well anymore, couldn't remember things I needed to memorize, or people's faces I didn't see regularly for long periods of time, no matter how important they were. And I used to be great at my jobs, great at multi-tasking, great at all the details. (Temp agencies used to love me, I'd just dive right in, and I worked great under pressure. Not anymore...) The hugest stress, in that last 7 month period I worked, was trying to hide my memory issues from my co-workers, patrons, bosses, and anyone else I dealt with. I felt like a fraud in a way...Not the person on my resume, that's for sure!
It finally dawned on my a few months ago, that if I want the Social Security Administration to believe this, since it's just becoming legitimately clear and scientifically confirmed what a big impact FM & CFS can have on Cognitive Function (See my posts earlier this month on the subject) and they need everything spelled out and scientifically backed up, that I needed to get some Neurocognitive Testing done. I found someone who would do it, and she seemed to be qualified, informed and very competent, as well as willing to work with me and my attorney. She also agreed that things seemed pretty serious. Only one problem: my insurance won't cover it, because apparently it's "Diagnostic Testing", and for that I would have to meet my $2,000 deductible first. Ha! Fat chance. I have $1500 to go, and it starts over at $0 in January!
But I just can't take the chance of not having that testing done. The more I've thought about it, the more I realize that it is vital. Though I have some proof now that I have pretty serious chronic Enteroviral infections, well, I actually had that proof at my last appeal, but even though the titers were high enough that if they had been Epstein Barr my application would've had to have been automatically approved by law, either my attorney didn't emphasize this, or it didn't matter to the judge. I'm seeing a very well known Infectious Disease specialist at the moment, so that might bring more weight to that, but I can't afford to take any chances.
Plus, it's getting so bad lately, many days my brain feels like a cramped-up pretzel from just trying to get through a routine day, (remembering why I walked into this room and why I grabbed my purse, and why my hand is in it, whether or not I took my medications, ugh! )and I'm a little afraid it might be causing damage. (I've read studies indicating this.) But I won't be able to get further testing, or find anyone to try and treat the problem unless I have real proof that something is wrong. (Despite the studies being done, doctors just aren't informed. The doctor who was going to do the tests thought it sounded more like I had Multiple Scelerosis...but the fact is, the Cognitive Dysfunction w/my conditions is just as bad, it's just not as well known.)
Anyhow the doctor who was going to do the tests wanted a $150 deposit, and it sounded like it was going to cost AT LEAST $500+ out of pocket...depending on the amount of time, even up past the $1,000 mark. (Her rate was $200-$300/hour I believe, and it was going to take a couple of days, sounded like 2-3 hours each.)
So, I decided to go ahead and start accepting donations towards getting that testing done. It's not going to happen by itself, and the last couple of years I've spent on the verge of homelessness, I didn't really get many offers of help, and the current solution is only temporary, so if I don't get my case approved this time around, who knows what will happen to me.
I'm tired of living on the edge of ruin, all the stress is making me sicker as the years go by, and try as I might, despite constant brainstorming, I can't find a way to make ends meet.
So if I can do anything to avoid that scenario, I will. If some chick can get $20,000+ to pay off purses and shoe purchases, maybe it's not so bad for me to ask for help too.
And maybe it will help people realize that though they may not be AIDS or Cancer, and while we may not be outright dying from them, FM and CFS are two VERY SERIOUS, life-changing, and potentially devestating illnesses, and the number of people trying to deal with them is continuing to grow. Yeah, they're not deadly (usually) but the thing is, you have to go on living...and if you can't work, what do you do? Cognitive Dysfunction aside, my health is still pretty unpredictable. I never know when the Autonomic Nervous System stuff will act up, when my feet will hurt too much to stand more than 10 minutes, or any of the many other symptoms will get to be too much to work through reliably.
So if you have any change to spare, and I mean it, every cent will count; please click on the Donate button on the right sidebar. In exchange, I promise to keep bringing you interesting posts about stuff that might help you and yours :)
A million thanks.
Fibrogrrl
Wednesday, October 29, 2008
What FM and CFS Mean for Me, Personally
On the sidebar to your right you will see links to sites explaining exactly what FM and CFS/CFIDS/ME are. You'll probably see a whole laundry list of symptoms. Not everyone has all of them, and the ones that are required for a diagnosis will even vary in degrees. So I thought a good place to start would be to elaborate on what these diagnoses mean to ME personally.
Fibromyalgia
I consider myself lucky here. The main symptom of FM is pain. Thankfully, mine is not constant or as severe as some. Mine seems to come in flares. Sometimes it's my whole body. But usually it's a certain body part that acts up for a period of time, sometimes a day, sometimes months.
FM Symptoms
Pain
Comes and Goes
Neck/Trapezius Region
Hands/Wrists
Ribs
Lower Back
Knees (prone to tendonitis)
Bottoms of Thighs
Feet
Whole Body Aches
Vague Discomfort
Fatigue
Waxes and Wanes
Varies from:
Wake up dying for more sleep or feeling groggy/weak/dizzy
Low Stamina (Get tired easily, within hours of awaking)
Exhausted but can't relax
Complete lack of energy - Holding myself up in a sitting position takes effort
Muscle tension
CFS
See above, plus:
Fluish body aches and malaise (Feeling like I'm getting the flu)
Swollen glands
Swollen Lymph nodes
Dysautonomia:
POTS
Low Blood Pressure
Pounding or racing heart
Inability to hold electrolytes
Chest pain
Feeling of forgetting to breathe, or breathing takes great effort
Inability to stay upright for long periods of time (standing/sitting) (POTS)
Neurally Mediated Hypotension
Problems regulating body temperature - Overheating/Hot Flashes
Others:
Subclinical Hypoglycemia
Balance problems/Clumsiness
New Allergies/Asthma
Moderate to Severe Cognitive Dysfunction, including:
Memory Problems
Inability to recognize people's faces I don't know well
Word-finding problems
Forgetting what I was saying, or going to do
Disorientation
Trouble following verbal directions
Problems focusing and blocking out distractions
Inability to multi-task effectively
How does this affect my life?
In many ways, as you can imagine. I can't hold a regular, even part-time job. Even school, at this point, has become very difficult. (Though I'm learning that if you are up-front and honest, and keep the lines of communication open, anything is possible. Easier said than done...I don't like feeling like I'm using my illness to get special consideration, but if it well help me finally get that degree...For now I think maybe I just need to rest for a bit.)
My symptoms are unpredictable and can change quickly. One day, I might feel pretty close to normal, the next I might have to lie down most of the day. One week, I might be just fine in the mornings, then for the next month, I may be slower, stiffer, more tired...and if I try and push myself to hard too early, I trigger more symptoms. Then, sitting up for a couple of hours, doing nothing, is about the only chance I have at being able to accomplish something in the afternoon. It's like my body has to adjust to being upright or something...
It's hard to make plans, social, or otherwise. I usually have to rest and save up my energy when I have a social engagement.
Many times I don't feel like talking on the phone, because I'm tired, and that aggravates the cognitive dysfunction (dubbed "brain fog" or just "fog" by many of us with FM/CFS) and I might have trouble putting together a sentence, finding words, space out in the middle of a thought, or end up just being plain tactless, which I'm trying to learn not to be mortified about. Again, something I'm trying to work through and overcome. Part of it is self-consciousness, I guess.
Sometimes, I may get very overwhelmed, and end up blocking out everything but the bare necessities of getting by. I'm working on this though. (I think all the stress I've been under the last couple of years, on top of being sick, has pretty much made pieces out of my ability to deal with stress well; I've been told I have slight adrenal problems too, and supplements I've taken definitely help, so that might be part of the reason.)
When I list it all out like this, it really puts things into perspective, and makes me think maybe I should be a little kinder to myself. I've really spent so much time feeling guilty and feeling like I'm not handling things well enough, like if I just tried harder I could "pull off normal", that somehow it's my fault that I ended up I this mess...
I think about all the movies, shows, and books I've read, even before I got ill, about people being so brave and graceful, even successful, despite their disabilities...and that doesn't help. But I have to remind myself. That's not real life. It's either fiction, or just a narrow glimpse into their lives. Also, I think if you grow up with a disability or illness, I think it's different. You learn your limitations and how to deal with them, you don't expect things that are impossible for you. To reach the age of 23, believing that anything is yours for the taking if you just work hard enough and are smart about things, and then have that all taken away, to have to change your whole outlook on life, who you are, learn that you have limitations, and force yourself to learn to ask for help, well, that's a pretty huge task.
Fibromyalgia
I consider myself lucky here. The main symptom of FM is pain. Thankfully, mine is not constant or as severe as some. Mine seems to come in flares. Sometimes it's my whole body. But usually it's a certain body part that acts up for a period of time, sometimes a day, sometimes months.
FM Symptoms
Pain
Comes and Goes
Neck/Trapezius Region
Hands/Wrists
Ribs
Lower Back
Knees (prone to tendonitis)
Bottoms of Thighs
Feet
Whole Body Aches
Vague Discomfort
Fatigue
Waxes and Wanes
Varies from:
Wake up dying for more sleep or feeling groggy/weak/dizzy
Low Stamina (Get tired easily, within hours of awaking)
Exhausted but can't relax
Complete lack of energy - Holding myself up in a sitting position takes effort
Muscle tension
CFS
See above, plus:
Fluish body aches and malaise (Feeling like I'm getting the flu)
Swollen glands
Swollen Lymph nodes
Dysautonomia:
POTS
Low Blood Pressure
Pounding or racing heart
Inability to hold electrolytes
Chest pain
Feeling of forgetting to breathe, or breathing takes great effort
Inability to stay upright for long periods of time (standing/sitting) (POTS)
Neurally Mediated Hypotension
Problems regulating body temperature - Overheating/Hot Flashes
Others:
Subclinical Hypoglycemia
Balance problems/Clumsiness
New Allergies/Asthma
Moderate to Severe Cognitive Dysfunction, including:
Memory Problems
Inability to recognize people's faces I don't know well
Word-finding problems
Forgetting what I was saying, or going to do
Disorientation
Trouble following verbal directions
Problems focusing and blocking out distractions
Inability to multi-task effectively
How does this affect my life?
In many ways, as you can imagine. I can't hold a regular, even part-time job. Even school, at this point, has become very difficult. (Though I'm learning that if you are up-front and honest, and keep the lines of communication open, anything is possible. Easier said than done...I don't like feeling like I'm using my illness to get special consideration, but if it well help me finally get that degree...For now I think maybe I just need to rest for a bit.)
My symptoms are unpredictable and can change quickly. One day, I might feel pretty close to normal, the next I might have to lie down most of the day. One week, I might be just fine in the mornings, then for the next month, I may be slower, stiffer, more tired...and if I try and push myself to hard too early, I trigger more symptoms. Then, sitting up for a couple of hours, doing nothing, is about the only chance I have at being able to accomplish something in the afternoon. It's like my body has to adjust to being upright or something...
It's hard to make plans, social, or otherwise. I usually have to rest and save up my energy when I have a social engagement.
Many times I don't feel like talking on the phone, because I'm tired, and that aggravates the cognitive dysfunction (dubbed "brain fog" or just "fog" by many of us with FM/CFS) and I might have trouble putting together a sentence, finding words, space out in the middle of a thought, or end up just being plain tactless, which I'm trying to learn not to be mortified about. Again, something I'm trying to work through and overcome. Part of it is self-consciousness, I guess.
Sometimes, I may get very overwhelmed, and end up blocking out everything but the bare necessities of getting by. I'm working on this though. (I think all the stress I've been under the last couple of years, on top of being sick, has pretty much made pieces out of my ability to deal with stress well; I've been told I have slight adrenal problems too, and supplements I've taken definitely help, so that might be part of the reason.)
When I list it all out like this, it really puts things into perspective, and makes me think maybe I should be a little kinder to myself. I've really spent so much time feeling guilty and feeling like I'm not handling things well enough, like if I just tried harder I could "pull off normal", that somehow it's my fault that I ended up I this mess...
I think about all the movies, shows, and books I've read, even before I got ill, about people being so brave and graceful, even successful, despite their disabilities...and that doesn't help. But I have to remind myself. That's not real life. It's either fiction, or just a narrow glimpse into their lives. Also, I think if you grow up with a disability or illness, I think it's different. You learn your limitations and how to deal with them, you don't expect things that are impossible for you. To reach the age of 23, believing that anything is yours for the taking if you just work hard enough and are smart about things, and then have that all taken away, to have to change your whole outlook on life, who you are, learn that you have limitations, and force yourself to learn to ask for help, well, that's a pretty huge task.
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