Tuesday, September 2, 2008

The Courage to Speak Out

I received a "history of women's right to vote" (below) which contained a quote worth repeating here:

'Courage in women is often mistaken for insanity.'

And so it has often gone for women with CFS and fibromyalgia: when we have the courage to stand up to the medical establishment and insist that we are not lazy, we are sick, we're given unwarranted psychiatric diagnoses.  When one of us has the courage to publicly speak out or blog about the reality of living with CFS, we're deemed insane.

Thankfully, in our generation, there are female doctors who don't automatically assume that all women's ills are evidence of mental illness, and they've gone looking for the physical reasons we don't feel well.  A female researcher, Elaine DeFreitas, found a virus that seemed to be the cause of CFS.  Dr. Nancy Klimas made it clear that the disability of CFS is equal to "patients with late-stage AIDS, patients undergoing chemotherapy, patients with multiple sclerosis".  I thank God every night for these women who had the courage to stand up to the establishment and believe that we're not just crazy.

* * *

This is the story of our Grandmothers, and Great-grandmothers, as they lived only 90 years ago.
            It was not until 1920 that women were granted the right to go to the polls and vote.
        The women who made it so were innocent and defenseless.  And by the end of the that night, they were barely alive.
        Forty prison guards wielding clubs, and their warden's blessing, went on a rampage against the 33 women wrongly convicted of 'obstructing sidewalk traffic.'
        They beat Lucy Burn, chained her hands to the cell bars above her head and left her hanging for the night, bleeding and gasping for air.  They hurled Dora Lewis into a dark cell, smashed her head against an iron bed and  knocked her out cold. Her cellmate, Alice Cosu, thought Lewis was dead and suffered a heart attack.  Additional affidavits describe the guards grabbing, dragging, beating, choking, slamming, pinching, twisting and  kicking the women.
        Thus unfolded the 'Night of Terror' on Nov. 15, 1917, when the warden at the Occoquan Workhouse in Virginia ordered his guards to teach a lesson to the suffragists imprisoned there because they dared to picket Woodrow Wilson's White House for the right to vote.
        For weeks, the women's only water came from an open pail.  Their food -- all of it colorless slop--was infested with worms.  When one of the leaders, Alice Paul, embarked on a hunger strike, they tied her to a chair, forced a tube down her throat and poured liquid into her until she vomited.  She was tortured like this for weeks until word was smuggled out to the press.
        So, refresh my memory.  Some women won't vote this year because -- why, exactly?  We have carpool duties?  We have to get to work?  Our vote doesn't matter?  It's raining?
        Last week, I went to a sparsely attended screening of HBO 's new movie 'Iron Jawed Angels.'  It is a graphic depiction of the battle these women waged so that I could pull the curtain at the polling booth and have my say.  I am  ashamed to say I needed the reminder.
        All these years later, voter registration is still my passion.  But the  actual act of voting had become less personal for me, more rote.  Frankly, voting often felt more like an obligation than a privilege.  Sometimes it was inconvenient.
        My friend Wendy, who is my age and studied women's history, saw the HBO movie, too.  When she stopped by my desk to talk about it, she looked angry.  She was -- with herself.  'One thought kept coming back to me as I watched that movie,' she said.  'What would those women think of the way I use -- or don't use -- my right to vote?  All of us take it for granted now, not just younger women, but those of us who did seek to learn.'
        The right to vote, she said, had become valuable to her 'all over again.'
        HBO released the movie on video and DVD.  I wish all history, social studies and government teachers would include the movie in their curriculum.  I want it shown on Bunco night, too, and anywhere else women gather.  I realize this isn't our usual idea of socializing, but we are not voting in the numbers that we should be, and I think a little shock therapy is in order.
        It is jarring to watch Woodrow Wilson and his cronies try to persuade a  psychiatrist to declare Alice Paul insane so that she could be permanently institutionalized.  And it is inspiring to watch the doctor refuse.  Alice Paul was strong, he said, and brave.  That didn't make her crazy.
        The doctor admonished the men: 'Courage in women is often mistaken for insanity.'
        Please, if you are so inclined, pass this on to all the women you know.
       We need to get out and vote and use this right that was fought so hard for by these very courageous women.  Whether you vote Democratic, Republican or independent party -- remember to vote.

Monday, September 1, 2008

Telethon Thoughts

One of the mothers on the Jerry Lewis Telethon said that her son "isn’t looking for special treatment". Well, neither are CFS patients. We’re just asking to be treated the way everyone else with a disability is treated.

I’m sure that if I said to someone with another disability the nasty things that have been said to me, that I would be immediately chastised for insensitivity. "How dare you say that, when it’s obvious he’s disabled?" Well, it was obvious to my last employer that I couldn’t work, yet when I say that I can’t work, I’m told to "just get off your lazy ass and get a job". Somehow, because my disability is CFS and not MS, that’s considered acceptable treatment. Except that there’s over 90% symptom overlap between MS and CFS; they are so similar that they are frequently misdiagnosed for each other. The only real difference is the name – they’re blessed with one that sounds medical and we’re cursed with one that doesn’t.

I’m not looking for special treatment in applying for Disability benefits. I meet the criteria. At times, I have far exceeded the criteria. I’m legally entitled to those benefits, they’re an insurance policy that I paid into for decades. If this were State Farm denying me payment for a home burglary, everyone would be up in arms that I was being taken advantage of by my insurance company. Yet, with far more evidence than required to be reimbursed for theft of a coin collection or TV, I’ve been repeatedly denied ... not because I don’t qualify for the benefits, but because of prejudice against the name of my diagnosis. If I bribed a doctor to change the diagnosis to MS, I’d get my benefits the next day, no questions asked, without my changing a word of my description of the symptoms.

"Oh, but all the lazy fakers say they have Chronic Fatigue Syndrome." Perhaps, but they don’t have abnormal blood tests proving there is something seriously physically wrong with them. They didn’t start a business when no one would hire them. They don’t have medical records showing that at every appointment for months they had a 101 fever. There are so many documentable abnormalities in CFS that anyone who’s willing to spend the money on brain scans and a full neurological workup can easily separate the lazy fakers from the real patients.

Dr. Nancy Klimas has said "there's evidence that the patients with this illness experience a level of disability that's equal to that of patients with late-stage AIDS, patients undergoing chemotherapy, patients with multiple sclerosis. And that has certainly given it a level of credibility that should be easily understood by people's friends and families, and certainly, by us, the health care providers." Should be, but isn’t.

I find that when I tell people that I have CFS, they snicker and make nasty comments about laziness and depression. But when I couch it differently "I have a neurological condition similar to MS", they’re solicitous and offer to go get my next cup of punch so that I don’t have to stand up and walk all the way over to the buffet table again. The only thing that’s changed is the perception. MS is a "real disease". MS patients end up in wheelchairs. There’s no vaccine or cure for MS. Well, all the same things can be said for CFS.

Researchers have found scientific evidence that the same virus is implicated in both MS and CFS. Does that change your perception of CFS? I bet it does.

Dr. Bruno believes CFS is another version of post-polio, and those who studied CFS back when it was called Myalgic Encephalomyelitis noticed that ME and polio travelled in side-by-side epidemics, and those who got ME were later immune to polio, leading them to believe the two viruses are closely related. Does that change your perception of CFS? It changed mine!

I’ve seen what polio can do. And while it’s all very well and good to be able to do things for myself now, I don’t want to end up later like my friend whose post-polio forced her into an electric wheelchair, so I don’t push myself, because "no pain, no gain" may be a good slogan for bodybuilders, but it’s a fast-track to total dependency for polio and CFS patients. Using your muscles to the point of pain now means paralytic muscle weakness later. It’s worth living in a messy house if it keeps me out of a power wheelchair. It’s worth letting someone fetch and carry for me at parties now if it means that I still have the ability to get my own glass of water 20 years from now when I’m home alone – because means I can still live at home instead of in a nursing home.

Sunday, August 31, 2008

Hope for CFS

If you have CFS, please don’t think things look entirely hopeless.

Doctors will tell you "no treatment, no cure", but they’re only half-right ... there’s no FDA-approved treatment, but there are things that they can do to help you. First, they need to address your symptoms with appropriate medication. If you’re vomiting, then anti-nausea medication; if you’re dizzy, then anti-vertigo medication, etc.

My first relapse was Thanksgiving 1987. By late Spring 1988, I was back to work full-time, and stayed at work full-time till February 2000. I won’t say it was easy – there were a lot of times that all I did was work/commute/sleep, but a doctor who knew what he was doing was able to get me back to work full-time for 12 years. That was 12 extra years to build up the monthly amount of my Disability benefits, 12 extra years to save for retirement, 12 extra years of not being stuck in the house 99% of the time.

His theory was that if you improved the quality of sleep, the body would begin to heal itself and then you could see what symptoms remained to be treated pharmaceutically.

Although CFS is not caused by insomnia, like any other health problem it can be made worse by not sleeping well. If you’re having trouble sleeping because of pain, then pain pills and/or sleeping pills will improve the quality of your sleep. Instead of drifting in light Stage 1 sleep for 20 hours, which is the "unrefreshing sleep" most patients complain of, you’ll get down to deep Stage 4 sleep, where healing occurs. After several months on effective sleeping pills, I suddenly developed a 101 fever. After a week, I was concerned that it didn’t go away and asked a friend who’s a nurse practitioner. She responded "Congratulations, you have an immune system again!" Good sleep had strengthened my immune system to the point that it could attack the virus. I ran a fever for six months, and when it was over, I felt better than I had in a long time. Although I backslid when I could no longer get those sleeping pills and was no longer sleeping well, I never got as bad as I had been before, because I now have a functioning immune system again to keep the virus in check.

Dr. Montoya at Stanford is having good luck with an anti-viral medication, but the stuff he’s using costs over $1000 a month. A member of my support group talked to her doctor about it, who suggested that Valtrex is almost the same thing, for only $200 a month, try that first, and if it doesn’t work, then move up to the more expensive stuff. Just like Dr. Montoya’s patients, she had a period of feeling even worse for several weeks, as the medication did its work, and then started to improve – she’s now back to work!

Dr. St. Amand has a popular therapy for fibromyalgia, which would seem to make sense for CFS, too. His theory is that guaifenesin (the stuff in cheap cough syrup and Mucinex) releases the toxins from the tissues. Like Dr. Montoya’s therapy, you’ll feel worse at first, with all those loose toxins running around looking for a way out.

Personally, I combined guaifenesin with triple-digit days and my grandfather’s old-fashioned sweat therapy: take a hot bath at bedtime, immediately followed by chugging a hot beverage (he preferred mulled wine, I used hot tea to wash down my guai pills), then immediately wrap up in every blanket in the house and sweat it out. And, boy, did I ever. Do laundry right before you start this ... I woke up every morning with my sleep shirt stinking to high heaven. I couldn’t stand to leave it on for one minute more than necessary. It wasn’t a good clean healthy sweat smell: it reeked nauseatingly, which indicated to me that those nasty toxins really were coming out as promised, and in massive quantities. Every night, I had to put on a different sleep shirt because I couldn’t wear the same one a second night, and the sheets needed changing a lot more often than usual, but the end result was worth it.

Dr. Murphree (www.DrRodger.com) told me that for every year of deterioration, you need at least one year of recuperation. So, don’t get frustrated if you’re not up to running marathons right away; at the earliest, I should expect to reach maximum improvement in 2010-2012 (and, no, I didn’t run marathons when I was well, so I don’t expect to be able to run one in 2015 – I don’t need to be SuperCrip, I just want to get back to work in the career I loved).

Nonetheless, compared to where I was in 2000-2002, when no one was giving me any useful treatment, I can see that I’ve made big strides: I’m no longer spending 24 hours a day lying in the middle of the bed hoping that I won’t pass out. I can sit up without immediately getting dizzy and needing to lie down. I can go out a couple hours two days a week without making myself worse (but three days is too much), a vast improvement when a quick trip to the doctor 4 blocks away sent me to bed the rest of the week. The digestive problems that used to plague me on a daily basis are now down to a couple times a week – still annoying, but no longer overwhelming: my life doesn’t revolve entirely around running to the bathroom. I can work more hours, more reliably – we’re a long way from the end of 2000 where I could manage only 5 minutes per hour.

Knowing what was recommended to my friend with polio for hand/arm problems from overuse, I tried the same thing: it’s not "use it or lose it" but "conserve to preserve". My hands work better if I don’t do too much. Whether it’s stitching/knitting/typing/chopping vegetables, I know when to stop and take a break so that I don’t reach the point of complete muscle failure. You don’t need a doctor for that quick-fix, only your own sense of observation of how much is too much.

In addition, there have been great strides made in research. While some government-funded researchers are still clinging to the disproven notion that the problem is entirely psychological, privately-funded research has found genetic abnormalities, a virus that’s also found in MS patients, and similarities to polio. Once they know what causes it, they can quickly work on a test, and a cure (or at least a treatment to minimize the symptoms).

Until then, find a doctor open-minded enough to experiment and think outside the box. The physician assistant I’m now seeing has a brother with MS; he sees the same symptoms, unlike someone who has only read about them in a book he knows I’m not exaggerating about how severe they can be, and prescribes for me what the MS specialist is prescribing to his brother for the same symptoms. Problem solved.

Media Information on Invisible Illness Awareness Week

Links to share with your favorite media people -- think about who you know who works in radio, TV or print journalism and send them a personalized note.


Dear Media Representative:

Thank you for taking the time to find out more about National Invisible Chronic Illness Awareness Week (NICIAW).We hope you will find helpful information to write your article, conduct your interview. If you have a specific question for our readers, we are happy to refer people to you.

For further information, please contact Lisa directly at: lisa@invisibleillness.com . She's happy to answer your questions or point you toward additional resources or information.


  • The Chronically Ill Are Tired of Casseroles: New Book shares 505 ways to encourage a chronically ill friend
    Our site | Distribution site

Other dates to be aware of:
September is Pain Awareness Month -Visit the Partners for Understanding Pain portal, available on the American Chronic Pain Association’s web site at www.theacpa.org

  • National Courtesy Month; September; 702-386-9115
  • National Shut-in Visitation Day; October 13; 215-374-2930
  • Make a Difference Day; October 21; 703-276-6445
  • Sweetest Day (act of unselfishness); October 21; 810-362-3223

Other resources of interest:

Invisible Illness Awareness Week 9/8-14


Invisible Illness Awareness Week Unites Thousands Who Get it

Posted: Wednesday, August 27, 2008

Living with an invisible illness can cause heartache and bitterness when one
feels no one understands the significance of the illness. Invisible Illness
Week provides that validation that people with invisible diseases often

San Diego, CA -- (SBWIRE) -- 08/27/2008 -- While we assume that most people
are generally healthy, you may be surprised to find out that an alarming
nearly 1 in 2 people in the United States live with a chronic illness
. So
why is it that most of us don't even know when a friend or co-worker is
dealing with diabetes, heart disease, lupus, or chronic fatigue syndrome?
Because, according to the U.S. Census, about 96% of people have invisible

National Invisible Chronic Illness Awareness Week is being held this year,
September 8-14, 2008. It's a secular event sponsored by Rest Ministries, the
largest Christian organization that serves the chronically ill. Visit the
invisible illness awareness campaign's web site at
www.invisibleillnessblog.org  . You can be encouraged through dozens of
articles, including daily guest bloggers, find ideas to get involved in the
outreach, and goodies to help promote awareness, from silicone bracelets to
brochures. Tired of those looks when you park in a handicapped spot? Be sure
to pick up a license plate or bumper sticker.

The focal point of the awareness campaign is September 8-12 (M-F) during
which 20 telephone seminars will be held on a variety of topics and are open
to anyone. Topics may also be of interest to those with loved-ones who have
an illness. Some seminars include:

- Assess Yourself: Find the Job You Desire and Can Do Despite Illness

- The Civil Rights of Patients with Invisible Chronic Illnesses

- Overcoming Self-Defeating Behaviors

- Secrets of Paying for Medical Care

How to Get Paid to Blog

- After the Diagnosis: The Journey Beyond

The theme this year is "Hope Can Grow From The Soil of Illness."

Lisa Copen, 39, began National Invisible Chronic Illness Awareness Week in
2002 as she continuously witnessed hundreds of people emotionally hurting
just because they felt as though no one "got it." Lisa has lived with
rheumatoid arthritis and fibromyalgia for fifteen years and understands how
validating it can be to just have one friend who you don't have to explain
everything to.

"Though there are hundreds of illnesses represented, and large differences in symptoms and pain levels, none of that matters more than feeling like someone understands you. When our best friends and family members are skeptical about our disease, it can be that last straw that sets us off into a spiraling depression."

She says, "We plan to unite the millions of people who live with chronic
pain and illness by offering an oasis of hope and understanding, as well as
helpful information and practical tools to live the best life possible."

Through the guest bloggers of Invisible Illness Week, to 20 seminars that
supply tools to ensure that one is cared for--both body and soul--National
Invisible Chronic Illness Awareness Week is succeeding in meeting that goal.

Find out more information and receive daily updates at

Media Relations Contact
Lisa Copen
National Invisible Chronic Illness Awareness Week

Related Links
Action Web Link Description
Visit National Invisible Chronic Illness Awareness Week's Press Room