...rather, it's the kind of flare that happens as your body seems to break down right before your eyes.
I'm doing a little experiment. I've reconfigured my computer workstation to resemble (more or less) the kind of thing I'd be doing during a 40 hour work week. So far, the results of this experiment have had exactly the results I expected: I'm in a great deal of pain after just a few moments of sitting in a regulation office chair (borrowed from my oldest son), typing on the keyboard, and talking on the phone. After approximately 10 minutes, I have to log off the internet and lay down to rest. And after laying down to rest, I'm still too exhausted and in too much pain to continue. My arms, legs, hands, feet and back are all begging for mercy after keeping this up for an entire week.
I can't work a regular full time job under these conditions. I'd be taking more breaks than working. Who in hell is going to hire someone that unreliable? It's been over a year since I had even a temp job, and two years and a little over a month since I held a regular 40 hour a week job. If I were to get Disability and SSI, I can go to doctors to get treatment, so I could possibly someday go back to working full time. After all, I cannot retire until after February, 2031, when I am 67 years old. I'm only 40 now. Twenty seven years is a hell of a long time to wait. I'd rather be working during those 27 years, thank you, but right now, in 2004, I cannot work. I need help, SSA!
(This is a depressing thought...when I'm 67, my 13 year old will be my age right now, 40!)
I have a headache, and I can't sleep. So what the hell else is new?
--MorelaterZ--
Saturday, August 28, 2004
Tuesday, August 24, 2004
I feel like crap...so what else is new?
I'm in flare again. My body aches, and all I want to do is sleep (just not when I'm supposed to *sigh*).
Dean gave me some Bextra several months ago, but all it does is make the fatigue ten times worse.
SSA sent me more paperwork to fill out. I really hate those stupid authorization forms! SSA sends me ten of them at a time, and I'm wondering who they're sending them to for me to need so many of them. My sister acted as my witness, meaning she had to sign all ten of them, too. She doesn't think I'm going to get Disability this time, either. Thanks for the good wishes, sis...NOT!
I hope that SSA sends me to another doctor, one that has some idea what I'm going thru. The lame exercises that I had to do last time isn't going to cut it. It didn't measure how I felt the next day, and didn't put me into situations that I would encounter while working. Stress plays a big part, too, and they didn't measure that, either.
If they're going to pull this crap on me this time, I'm going to call them on it, because I know what I think needs to be evaluated. They're just doing a job, and that's to report back to SSA that I don't have a problem. I suspect that any doctor that SSA sends me to is not up on FMS and its attendant symptoms, and nor do they care.
I gotta get outta Oklahoma.
--MorelaterZ--
Dean gave me some Bextra several months ago, but all it does is make the fatigue ten times worse.
SSA sent me more paperwork to fill out. I really hate those stupid authorization forms! SSA sends me ten of them at a time, and I'm wondering who they're sending them to for me to need so many of them. My sister acted as my witness, meaning she had to sign all ten of them, too. She doesn't think I'm going to get Disability this time, either. Thanks for the good wishes, sis...NOT!
I hope that SSA sends me to another doctor, one that has some idea what I'm going thru. The lame exercises that I had to do last time isn't going to cut it. It didn't measure how I felt the next day, and didn't put me into situations that I would encounter while working. Stress plays a big part, too, and they didn't measure that, either.
If they're going to pull this crap on me this time, I'm going to call them on it, because I know what I think needs to be evaluated. They're just doing a job, and that's to report back to SSA that I don't have a problem. I suspect that any doctor that SSA sends me to is not up on FMS and its attendant symptoms, and nor do they care.
I gotta get outta Oklahoma.
--MorelaterZ--
Friday, August 06, 2004
An open letter to friends and loved ones...
(otherwise, those of you who are "normal")
Having FMS means many things change, and a lot of them are invisible.Unlike having cancer or being hurt in an accident, most people do not understand even a little about FMS and its effects, and of those that think they know, many are actually mis-informed.
In the spirit of informing those who wish to understand...
These are the things that I would like you to understand about me before you judge me...
- Please understand that being sick doesn't mean I'm not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit I probably don't seem like much fun to be with, but I'm still me stuck inside this body. I still worry about school, and work and my family and friends, and most of the time I'd still like to hear you talk about yours, too.
-Please understand the difference between "happy" and "healthy" .When you've got the flu you probably feel miserable with it, but I've been sick for years. I can't be miserable all the time , in fact I work hard at not being miserable. So if you're talking to me and I sound happy, it means I'm happy. That's all. It doesn't mean that I'm not in a lot of pain, or extremely tired, or that I'm getting better, or any of those things. Please, don't say, "Oh, you are sounding better!" I am not sounding better, I am sounding happy. If you want to comment on that, you're welcome. Please understand that being able to stand for ten minutes doesn't necessarily mean that I can stand for twenty minutes, or an hour. And, just because I manage to stand for thirty minutes yesterday doesn't mean that I can do the same today. With a lot of disease you are either paralyzed, or you can move. With this one, it gets more confusing.
-Please repeat the above paragraph substituting "sitting", "walking","thinking", "being sociable" and so on.... it applies to everything. That's what FMS does to you.
-Please understand that FMS is variable. It's quite possible (for me, its common) that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the kitchen. Please don't attack me when I'm ill by saying "But you did it before!" if you want me to do something then ask if I can. In a similar vein, I may need to cancel an invitation at the last minute, it this happens please do not take it personally.
-Please understand that "getting out and doing things" does not make me feel better, and can often make me seriously worse. Telling me I need a treadmill, or that I just need to lose (or gain) weight, get this exercise machine, join this gym, try these classes... may frustrate me to tears, and is not correct....if I was capable of doing these things , don't you know that I would? I am working with my doctor and physical therapist and am already doing the exercise and diet that I am supposed to do. Another statement that hurts is, "You just need to push yourself more, exercise harder..." ObviouslyFMS deals directly with muscles, and because our muscles don't repair themselves the way your muscles do this does far more damage than good and could result in recovery time in days or weeks or months from a single activity. Also, FMS may cause secondary depression (wouldn't you get depressed if you were hurting and exhausted for years on end!?) but it is not created by depression.
-Please understand that if I say I have to sit down/lie down/take these pills now, that I do have to do it right now...it can't be put off or forgotten just because I'm out for the day (or whatever). FMS does not forgive.
-If you want to suggest a cure to me, don't. It's not because I don't appreciate the thought, and it's not because I don't want to get well. It's because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped , all people with FMS, then we'd know about it. This is not a drug company conspiracy, there is worldwide networking (both on and off the Internet) between people with FMS, if something worked we would know.
-If after reading that, you still want to suggest a cure, then do it, but don't expect me to rush out and try it. I'll take what you said and discuss it with my doctor.
In many ways I depend on you....people who are not sick....I need you to visit me when I am too sick to go out....Sometimes I need you to help me with the shopping, cooking or cleaning.
I may need you to take me to the doctor, or the physical therapist. I need you on different levels...you're my link to the outside world...if you don't come to visit me then I might not get to you.
As much as it's possible, I need you to understand me, and still love me. I miss my former life...I miss everything I used to do that I can't now. I grieve for those things.....in a way you cannot understand.
Please just be there.....
Having FMS means many things change, and a lot of them are invisible.Unlike having cancer or being hurt in an accident, most people do not understand even a little about FMS and its effects, and of those that think they know, many are actually mis-informed.
In the spirit of informing those who wish to understand...
These are the things that I would like you to understand about me before you judge me...
- Please understand that being sick doesn't mean I'm not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit I probably don't seem like much fun to be with, but I'm still me stuck inside this body. I still worry about school, and work and my family and friends, and most of the time I'd still like to hear you talk about yours, too.
-Please understand the difference between "happy" and "healthy" .When you've got the flu you probably feel miserable with it, but I've been sick for years. I can't be miserable all the time , in fact I work hard at not being miserable. So if you're talking to me and I sound happy, it means I'm happy. That's all. It doesn't mean that I'm not in a lot of pain, or extremely tired, or that I'm getting better, or any of those things. Please, don't say, "Oh, you are sounding better!" I am not sounding better, I am sounding happy. If you want to comment on that, you're welcome. Please understand that being able to stand for ten minutes doesn't necessarily mean that I can stand for twenty minutes, or an hour. And, just because I manage to stand for thirty minutes yesterday doesn't mean that I can do the same today. With a lot of disease you are either paralyzed, or you can move. With this one, it gets more confusing.
-Please repeat the above paragraph substituting "sitting", "walking","thinking", "being sociable" and so on.... it applies to everything. That's what FMS does to you.
-Please understand that FMS is variable. It's quite possible (for me, its common) that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the kitchen. Please don't attack me when I'm ill by saying "But you did it before!" if you want me to do something then ask if I can. In a similar vein, I may need to cancel an invitation at the last minute, it this happens please do not take it personally.
-Please understand that "getting out and doing things" does not make me feel better, and can often make me seriously worse. Telling me I need a treadmill, or that I just need to lose (or gain) weight, get this exercise machine, join this gym, try these classes... may frustrate me to tears, and is not correct....if I was capable of doing these things , don't you know that I would? I am working with my doctor and physical therapist and am already doing the exercise and diet that I am supposed to do. Another statement that hurts is, "You just need to push yourself more, exercise harder..." ObviouslyFMS deals directly with muscles, and because our muscles don't repair themselves the way your muscles do this does far more damage than good and could result in recovery time in days or weeks or months from a single activity. Also, FMS may cause secondary depression (wouldn't you get depressed if you were hurting and exhausted for years on end!?) but it is not created by depression.
-Please understand that if I say I have to sit down/lie down/take these pills now, that I do have to do it right now...it can't be put off or forgotten just because I'm out for the day (or whatever). FMS does not forgive.
-If you want to suggest a cure to me, don't. It's not because I don't appreciate the thought, and it's not because I don't want to get well. It's because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped , all people with FMS, then we'd know about it. This is not a drug company conspiracy, there is worldwide networking (both on and off the Internet) between people with FMS, if something worked we would know.
-If after reading that, you still want to suggest a cure, then do it, but don't expect me to rush out and try it. I'll take what you said and discuss it with my doctor.
In many ways I depend on you....people who are not sick....I need you to visit me when I am too sick to go out....Sometimes I need you to help me with the shopping, cooking or cleaning.
I may need you to take me to the doctor, or the physical therapist. I need you on different levels...you're my link to the outside world...if you don't come to visit me then I might not get to you.
As much as it's possible, I need you to understand me, and still love me. I miss my former life...I miss everything I used to do that I can't now. I grieve for those things.....in a way you cannot understand.
Please just be there.....
Thursday, August 05, 2004
Aspartame and FMS, part 2
Report: aspartame is Neurotoxic and Worsens Fibromyalgia, Chronic
Fatigue Syndrome
ImmuneSupport.com
05-10-2004
By Pratap Ravindran
Pune, India
(note: boldface and italics therein are mine. --Stef)
COCA-COLA, PepsiCo and a whole bunch of other big companies are in
the dock again, this time around because of their use of the
artificial sweetener, aspartame.
It all started with a Miami longshoreman, Mr. Bartimous Berry, filing
a lawsuit in March in a state court in Miami, claiming that Coca-Cola
Co, the world's largest manufacturer of soft drinks, is selling a
version of Diet Coke at soda fountains which are cheaper and more
profitable than the formula used for beverages sold in cans and
bottles.
It was alleged in the suit that Coca-Cola mixes the sweeteners,
aspartame and saccharin, in its beverages sold at soda fountains,
while canned and bottled Diet Coke contains only the more expensive
aspartame.
Coca-Cola, which says it uses saccharin to stabilize fountain syrup
before adding carbonated water, doesn't advertise the difference,
according to the suit.
Mr. Lance Harke, who represents Mr. Berry in the suit which seeks to
represent all Florida soda buyers, told the media: "Coca-Cola profits
not only because there's a higher profit margin but also there's a
stigma associated with saccharin rightly or wrongly."
It may be recalled in this context that saccharin had formerly been
classified as a carcinogen in the US.
Mr. Dan Schafer, Coca-Cola spokesman, had been quoted by the media as
saying that saccharin is used for "product quality reasons" and not
for "money reasons."
According to Mr. Schafer, aspartame loses its sweetness faster in a
fountain drink than in a canned or bottled soda. He said, "We think
the suits are frivolous and we think they are without merit," adding
that the company faces identical allegations in lawsuits filed in
Illinois and California.
Subsequently, in April, other lawsuits were filed in three separate
California courts, Shasta, Sonoma and Butte County, against twelve
companies which produce or use the artificial sweetener aspartame,
originally made and marketed by Monsanto Corporation, as a sugar
substitute in their products.
The defendants in the lawsuits, which identify aspartame as a
neurotoxin, include Coca-Cola, PepsiCo, Bayer Corp, the Dannon
Company, William Wrigley Jr. Company, ConAgra Foods, Wyeth Inc, The
NutraSweet Company, and Altria Corp (parent company of Kraft Foods
and Philip Morris).
The plaintiffs have asked for an injunction to stop companies from
producing, manufacturing, processing, selling or using aspartame and,
in all three cases, have sought a jury trial.
The suits allege that the food companies committed fraud and breach
of warranty by marketing products with the full knowledge that
aspartame, the sweetener in them, is neurotoxic.
According to the plaintiffs, aspartame is a drug masquerading as an
additive. It interacts with other drugs and is a chemical hyper-
sensitization agent. Aspartame, it has been alleged, causes headache,
memory loss, seizures, vision loss, coma and cancer. In addition, it
worsens or mimics the symptoms of such diseases and conditions as
fibromyalgia, MS, lupus, ADD, diabetes, Alzheimer's, chronic fatigue
and depression.
Experts have been quoted as saying that aspartame liberates free
methyl alcohol. The resulting chronic methanol poisoning affects the
dopamine system of the brain causing addiction. Methanol, or wood
alcohol, constitutes one-third of the aspartame molecule and is
classified as a severe metabolic poison and narcotic. Further, the
consumption of aspartame can cause sudden death brought about by the
damage it inflicts on the cardiac conduction system.
Herbal variants find their way
The dangers of aspartame (NutraSweet) ingestion were first publicized
in India in the July-December 1995 issue of the Association for
Consumers Action on Safety and Health (ACASH) newsletter.
The ACASH newsletter warning had stated: "All of the breakdown
products of aspartame are toxic. It has been shown that Aspartic Acid
and Gutamic acids in free forms can cause severe neurological damage.
These acids damage the nerve cells in its free forms."
The warning had been based at least in part on a review of aspartame
research which appeared in the Journal of the Diabetic Association of
India (Vol. 35, No. 4, 1995). The research review was written by Dr.
J. Barua (Ophthalmologist) and Dr. Arun Bal (Surgeon).
This and other similar warnings notwithstanding, the Union Government
permits the use of artificial sweeteners in approximately 25 food
items, including sugar confectionery, toffee, lozenges, chewing gum,
chocolate products, carbonated water, soft drinks, traditional
sweets, jams and jellies.
According to the Ministry of Health and Family Welfare's draft
notification amending the PFA rules, the use of artificial sweeteners
can be allowed in food products according to specifications.
Manufacturers are, however, required to print a declaration on the
package saying, "contains artificial sweetener."
Today, the country's artificial sweetener industry has an aggregate,
annual turnover of Rs 60 crore and is estimated to be growing at 20
per cent a year because it has successfully expanded its clientele
from diabetics to all calorie-conscious people. Almost all these
artificial sweeteners contain aspartame.
According to the industry, aspartame has been approved by major food
and drug regulatory authorities across the world.
However, with some medical practitioners in India questioning the
merits of its long-term usage among healthy people, some herbal
variants which contain neither sugar nor aspartame have been
introduced in the domestic market.
Copyright © 2004, The Hindu Business Line. Online at
http://www.thehindubusinessline.com.
Fatigue Syndrome
ImmuneSupport.com
05-10-2004
By Pratap Ravindran
Pune, India
(note: boldface and italics therein are mine. --Stef)
COCA-COLA, PepsiCo and a whole bunch of other big companies are in
the dock again, this time around because of their use of the
artificial sweetener, aspartame.
It all started with a Miami longshoreman, Mr. Bartimous Berry, filing
a lawsuit in March in a state court in Miami, claiming that Coca-Cola
Co, the world's largest manufacturer of soft drinks, is selling a
version of Diet Coke at soda fountains which are cheaper and more
profitable than the formula used for beverages sold in cans and
bottles.
It was alleged in the suit that Coca-Cola mixes the sweeteners,
aspartame and saccharin, in its beverages sold at soda fountains,
while canned and bottled Diet Coke contains only the more expensive
aspartame.
Coca-Cola, which says it uses saccharin to stabilize fountain syrup
before adding carbonated water, doesn't advertise the difference,
according to the suit.
Mr. Lance Harke, who represents Mr. Berry in the suit which seeks to
represent all Florida soda buyers, told the media: "Coca-Cola profits
not only because there's a higher profit margin but also there's a
stigma associated with saccharin rightly or wrongly."
It may be recalled in this context that saccharin had formerly been
classified as a carcinogen in the US.
Mr. Dan Schafer, Coca-Cola spokesman, had been quoted by the media as
saying that saccharin is used for "product quality reasons" and not
for "money reasons."
According to Mr. Schafer, aspartame loses its sweetness faster in a
fountain drink than in a canned or bottled soda. He said, "We think
the suits are frivolous and we think they are without merit," adding
that the company faces identical allegations in lawsuits filed in
Illinois and California.
Subsequently, in April, other lawsuits were filed in three separate
California courts, Shasta, Sonoma and Butte County, against twelve
companies which produce or use the artificial sweetener aspartame,
originally made and marketed by Monsanto Corporation, as a sugar
substitute in their products.
The defendants in the lawsuits, which identify aspartame as a
neurotoxin, include Coca-Cola, PepsiCo, Bayer Corp, the Dannon
Company, William Wrigley Jr. Company, ConAgra Foods, Wyeth Inc, The
NutraSweet Company, and Altria Corp (parent company of Kraft Foods
and Philip Morris).
The plaintiffs have asked for an injunction to stop companies from
producing, manufacturing, processing, selling or using aspartame and,
in all three cases, have sought a jury trial.
The suits allege that the food companies committed fraud and breach
of warranty by marketing products with the full knowledge that
aspartame, the sweetener in them, is neurotoxic.
According to the plaintiffs, aspartame is a drug masquerading as an
additive. It interacts with other drugs and is a chemical hyper-
sensitization agent. Aspartame, it has been alleged, causes headache,
memory loss, seizures, vision loss, coma and cancer. In addition, it
worsens or mimics the symptoms of such diseases and conditions as
fibromyalgia, MS, lupus, ADD, diabetes, Alzheimer's, chronic fatigue
and depression.
Experts have been quoted as saying that aspartame liberates free
methyl alcohol. The resulting chronic methanol poisoning affects the
dopamine system of the brain causing addiction. Methanol, or wood
alcohol, constitutes one-third of the aspartame molecule and is
classified as a severe metabolic poison and narcotic. Further, the
consumption of aspartame can cause sudden death brought about by the
damage it inflicts on the cardiac conduction system.
Herbal variants find their way
The dangers of aspartame (NutraSweet) ingestion were first publicized
in India in the July-December 1995 issue of the Association for
Consumers Action on Safety and Health (ACASH) newsletter.
The ACASH newsletter warning had stated: "All of the breakdown
products of aspartame are toxic. It has been shown that Aspartic Acid
and Gutamic acids in free forms can cause severe neurological damage.
These acids damage the nerve cells in its free forms."
The warning had been based at least in part on a review of aspartame
research which appeared in the Journal of the Diabetic Association of
India (Vol. 35, No. 4, 1995). The research review was written by Dr.
J. Barua (Ophthalmologist) and Dr. Arun Bal (Surgeon).
This and other similar warnings notwithstanding, the Union Government
permits the use of artificial sweeteners in approximately 25 food
items, including sugar confectionery, toffee, lozenges, chewing gum,
chocolate products, carbonated water, soft drinks, traditional
sweets, jams and jellies.
According to the Ministry of Health and Family Welfare's draft
notification amending the PFA rules, the use of artificial sweeteners
can be allowed in food products according to specifications.
Manufacturers are, however, required to print a declaration on the
package saying, "contains artificial sweetener."
Today, the country's artificial sweetener industry has an aggregate,
annual turnover of Rs 60 crore and is estimated to be growing at 20
per cent a year because it has successfully expanded its clientele
from diabetics to all calorie-conscious people. Almost all these
artificial sweeteners contain aspartame.
According to the industry, aspartame has been approved by major food
and drug regulatory authorities across the world.
However, with some medical practitioners in India questioning the
merits of its long-term usage among healthy people, some herbal
variants which contain neither sugar nor aspartame have been
introduced in the domestic market.
Copyright © 2004, The Hindu Business Line. Online at
http://www.thehindubusinessline.com.
Tuesday, August 03, 2004
Aspartame and FMS
I drank diet sodas this past weekend. I had read months ago that Aspartame (NutraSweet) can aggravate the symptoms of FMS, and I have found that to be true. I wasn't even thinking about that when I had Diet Coke at my sister's on Saturday, and Diet Pepsi on Sunday. But now, I'm feeling it. I've been in quite a bit of pain Monday and today. I never thought to connect it to artificial sweetners.
There was a time where I was drinking diet sodas regularly. There are so many foods that have artificial sweetners in them that I wasn't even aware of. I'm going to have to make an effort to avoid things with NutraSweet, Splenda, Sweet 'n' Low, etc. I don't know if that alone will help, but it's a start until I can contact a doctor and begin regular treatments.
There are so many places on the web that promise that their method is the method to answer everything. I generally take those with a grain of salt. If they're so good, why haven't the doctor's that treat FMS patients heard of them? Why haven't been written up in medical journals and splashed across our TV screens? Probably because they're either bogus, or are being supressed by those doctors who don't think that FMS/CFS is a "legitimate" medical condition.
This is where I found some information. There are some good recommendations, but that's something that want to explore on my own before I render an opinion.
--MorelaterZ--
There was a time where I was drinking diet sodas regularly. There are so many foods that have artificial sweetners in them that I wasn't even aware of. I'm going to have to make an effort to avoid things with NutraSweet, Splenda, Sweet 'n' Low, etc. I don't know if that alone will help, but it's a start until I can contact a doctor and begin regular treatments.
There are so many places on the web that promise that their method is the method to answer everything. I generally take those with a grain of salt. If they're so good, why haven't the doctor's that treat FMS patients heard of them? Why haven't been written up in medical journals and splashed across our TV screens? Probably because they're either bogus, or are being supressed by those doctors who don't think that FMS/CFS is a "legitimate" medical condition.
This is where I found some information. There are some good recommendations, but that's something that want to explore on my own before I render an opinion.
--MorelaterZ--
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