Janelle Meraz Hooper is an award-winning independent author with five books published in the novel, romance, and short story genres. She is from Oklahoma but now lives in Washington State. Her website is: www.JanelleMerazHooper.com. You can also read her short stories, essays, and other writings at The Blue Rose Bouquet. She loves to hear from her readers and can be reached at: JanelleMHooper@comcast.net.

Chronic-Illness.org invites you to read about Janelle Meraz Hooper’s systemic lupus and arthritis experience:

Sickly

by Janelle Meraz Hooper

Every time one of my relatives commented to my mother that I looked sickly, she’d chase me on the sunny patio to get some sun. The more sun I got, the sicker I got. I had systemic lupus.

Nobody in my family even knew what lupus was in those days. From about twelve-years of age until the present I’ve had systemic lupus and other auto-immune conditions.

It crept up on me slowly like tree roots in a water line, doing it’s damage mostly unseen. Even when the damage to my body was visible, for years no one identified the problem. I was just weak. Thin. Lethargic. Sickly.

I can remember my dance director when I was in high school taking me aside and explaining she’d have to take me out of the main dance routines because I wasn’t developing enough muscle tissue to sustain the rigorous choreography.  She knew I loved dancing so she gave me my own position on the stage. I became the clown dancer, dancing through and around the other dancers, bringing laughs from the audience.

Dance became very tiring for me so I moved on to my next love, theatre. That was okay for a while, except that arthritis hit my voice and I became unable to project.

Undaunted, I moved onto radio and television. They had microphones. My voice was no longer a problem.

We moved away from where the radio and television station was, so I returned briefly — off and on — to theatre. By then, my voice was better. The arthritis had moved on to other places in my body.

Then I became more crippled, unable to move across a stage with confidence. I took up stained glass. By then, arthritis had weakened my hands. I abandoned stained glass and went to art school to study watercolor. By now, I was over forty and arthritis was in my knees and feet. In art school, we sat up on high stools to reach our art tables. I got kicked out of art school because they were worried about my being so physically unstable.

By then, I was so disabled that the doctors asked me to take some tests to look for clues for things I could do to support myself. I must have taken every test they had, physical and mental. The result: I was most suited to write or work for the state department at an embassy. An embassy? In my hometown of Puyallup? We barely had a Chinese restaurant.

A few days after I got the test results, I got a phone call offering me a job as a staff writer at a local magazine.

From there, I moved onto writing novels.

I call this my last frontier. If I ever become unable to write, there are few other things I’m capable of doing and I’m interested in none of them.

But I guess I could pick something else if I had to.

I could go into politics, I guess.

Or become a bag lady.

Or move to New Orleans and sell violets on a street corner.

I kind of like that last idea. I could set up my cart outside a bar with lots of music…

###

Reminder: You can find links to Janelle Meraz Hooper’s books and other writings at www.JanelleMerazHooper.com and The Blue Rose Bouquet.

My systemic lupus and arthritis story: Sickly by Janelle Meraz Hooper is a post from: Chronic Illness.org

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Fibromyalgia is a chronic disorder characterized by:

• musculoskeletal pain
• fatigue
• weakness
• tenderness in localized areas of the neck, spine, shoulders, and hips sometimes referred to as tender points or pressure points
• muscle spasms
• sleep disturbances
• irritable bowel syndrome
• and other body disturbances.

Index to Fibromyalgia is a Pain
T-Shirt and Gift Idea Design

For more information on Fibromyalgia, read: What is Fibromyalgia (FM, FMS)?

For additional Fibromyalgia Information and Resources, see:

Chiari Syndrome and/or Cervical Spinal Stenosis

Information on surgery that corrects a problem that causes some forms of Fibromyalgia

Fibromyalgia Personal Stories

Fibromyalgia and Rheumatoid Arthritis Study

Addressing the Realities of Fibromyalgia Pain

Fibromyalgia Newsletters

Fibromyalgia Support Groups

Is There a Foot-Fibromyalgia Connection?

Hormones and Chronic Fatigue Syndrome / Fibromyalgia

Or visit these resources:

*

FMS-Help.com

Dominie Soo Bush’s personal site on which she gives details about how she copes with her Fibromyalgia and CFIDS.

Fibromyalgia Network Online

The Web site for the publisher of the (print) Fibromyalgia Network Newsletter, this site is also a resource for educational materials on Fibromyalgia and Chronic Fatigue Syndrome.

Fibromyalgia Research

The National Institute of Arthritis and Musculoskeletal and Skin Diseases maintains this site of information on current Fibromyalgia research.

Questions and Answers About Fibromyalgia

Another National Institute of Arthritis and Musculoskeletal and Skin Diseases page.

WebMD – Fibromyalgia Health Center

I Hurt All Over

A “Psychology Today” article by Mirinda J. Kossoff about fibromyalgia. The article covers the estimated number of people in the United States who suffer from the disease, the nature and symptoms of the disease, and the research being conducted to understand the disease.

Disabling Realities of Fibromyalgia

In Fibromyalgia Syndrome (FMS) — a brochure from the Fibromyalgia Network, it says: “Overall, studies have shown that FMS can be equally as disabling as rheumatoid arthritis.” Information is available on the FM Network about the actual research that backs up that statement. You can learn how to get an informational packet about Fibromyalgia on the Fibromyalgia Network Web site or by calling 1-800-853-2929.

aboutFIBRO

Fibromyalgia (and Chronic Fatigue Syndrome) information site hosted by Kent Holtorf, MD.

Fibromyalgia Directory

Fibromyalgia Directory provides links to a number of online organizations, support groups and informational sites for Fibro patients.

The Fibromyalgia and Fatigue Center

This is the Web site for the Fibromyalgia & Fatigue Centers (FFC). Founded by Chronic Fatigue Syndrome and Fibromyalgia patient Dr. Kent Holtorf, these centers use a holistic approach to treatment for these conditions.

Fibromyalgia: Resources for Families

This site bills itself as one to help you “understand fibromyalgia in the context of family life.”

The American Fibromyalgia Syndrome Association

A non-profit fibromyalgia syndrome association, located in Arizona.

The pain from fibromyalgia is real, researchers say

An article about how University of Michigan doctors say widespread evidence verifies validity of condition, and say patients need to be taken seriously.

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(Revised)

Many who cope with Chronic Fatigue Syndrome, Fibromyalgia, and other chronic illnesses must also deal with sleep disturbances. Getting enough rest is essential to good health and well-being, so many must rely on sleep medications.

Treating Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia: “A Prescription For Sleep”

An article on drugs have shown promise in assisting sleep for patients with CFS/CFIDS/ME.

Mayo Clinic “Chronic Fatigue Syndrome: Treatment and Drugs” page

This article cites that “[t]here’s no specific chronic fatigue syndrome treatment,” but does include a discussion of some of the treatments. (They cite that “[r]esearch has proved that gradually increasing exercise can improve the symptoms of chronic fatigue syndrome,” but fail to mention that for those with exercise-intolerant Chronic Fatigue Syndrome, the opposite has been proven to be the case: For those with exercise-intolerant Chronic Fatigue Syndrome, exercise exacerbates the symptoms. For more information, refer to Dr. David S. Bell.) The page does cite some sleep assistance protocols and experimental therapies.

CDC – Toolkit: Sleep – Chronic Fatigue Syndrome (CFS)

This Centers for Disease Control and Prevention (CDC) page concentrates more on “good sleeping habits,” or what they refer to as “sleep hygiene,” than on sleep medications. (Keep in mind that historically [hysterically?] the CDC has chosen to consider CFS a psychosomatic condition rather than a physical illness. According to this page, that’s reflected in the NIH annual per-patient research funding: AIDS/$2700; Asthma/$300; CFS/$4.)

Lifestyle changes and the right medications can help ease fatigue and restless sleep from fibromyalgia.

A WebMD article. (Note that while many patients with Fibromyalgia also have Chronic Fatigue Syndrome, there is a difference between “chronic fatigue” and “Chronic Fatigue Syndrome.”)

Medication Use by Persons with Chronic Fatigue Syndrome: Results of a Randomized Telephone Survey in Wichita, Kansas

Results of a 2003 survey.

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(Revised) There are lots of diet plans to choose from. Each has its own claims to fame — or at least its promise of a more healthful eating lifestyle. Part of the problems with those diagnosed with syndromes and conditions like Chronic Fatigue Syndrome (CFS) and Fibromyalgia (FM) is that not everybody experiences exactly the same symptoms. For example, some with Fibromyalgia have Irritable Bowel Syndrome (IBS); others do not. Therefore, the same as not every treatment plan works for everyone diagnosed with CFS or FM, there isn’t a “one size fits all” eating regimen either. Many find they must match their diet with their (for lack of a better word) form of their disease, syndrome, or condition.

Details on the Specific Carbohydrate Diet™
by Bernie Standish

The Specific Carbohydrate Diet™ (SCD™) is a grain-free, lactose-free, and sucrose-free diet that was originally designed for Celiac Disease. Today the SCD is also used for Irritable Bowel Syndrome, Candida, Crohn’s Disease, Ulcerative Colitis, Diverticulitis, Cystic Fibrosis, and Chronic Diarrhea. The SCD™ is proving helpful to many with Chronic Fatigue Syndrome and Fibromyalgia as well. [Read more....]

The Anti-Inflammation Diet

Citing Jack Challem, author of The Inflammation Syndrome, this article by Catherine Guthrie explains the dietary steps to stamp out inflammation leading to high c-reactive protein (CRP) levels associated with the elevated risk of heart disease, arthyritis, fibromyalgia, and other disorders.

May the (Organic) Source Be With You

Most experts agree that organic and all natural foods free of chemical additives and preservatives are the healthiest food choices.

Diabetes and Diabetic Diets:

CookingWithPam.com Diabetic Cooking Section

Chronic-Illness.org Diabetes Section

The Everything Writing Well Cookbook recipe index

Special Diet Web Sites:

Enabled Cooking

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When confronted with a Chronic Fatigue Syndrome, CFIDS, or Myalgic Encephalomyelitis (M.E.) diagnosis, it helps to keep abreast of the latest treatments and information. This is especially important because your family and friends may be having difficulty understanding the changes in you — especially when you don’t understand those changes yourself.

These sites have Chronic Fatigue Syndrome support newsletters:

CFIDS.org

CFIDS.org newsletter archives

The Lyndonville News

Bi-monthly newsletter from Dr. David S. Bell.

The Lyndonville News Archives

The Doctor’s Guide to Chronic Fatigue Syndrome:
Understanding, Treating, and Living With CFIDS

by David S. Bell, M.D.

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In addition, this is some of the revised information online about Chiari syndrome and/or cervical spinal stenosis:

Chiari Malformation

From the National Institutes of Health: National Institute of Neurological Disorders and Stroke, general information about research, treatment, and prognosis.

Chiari Malformation

The Columbia University Medical Center Chiari malformation pediatric neurosurgery site.

Chiari Malformation in CFIDS/FM on Co-Cure

The May 1999 article from the CFIDS Chronicle on a possible connection between Chiari and CFS/FM. (Note: This article has a large number of  the links to the other sites mentioned in Lisa Lorden’s 2000 article about this condition; however, most of those links no longer work.)

CONTROVERSY: Spinal Surgery for Fibromyalgia Patients

A National Fibromyalgia Research Association report on  the January 25, 2003 the North Carolina Medical Board’s decision to indefinitely suspend Dr. Michael Rosner’s medical license. (According to information on this page, Dr. Rosner is a neurosurgeon who had been exploited by the media as doing surgeries to “cure” fibromyalgia and CFIDS, when in fact he has never performed a surgery as a treatment for FM/CFIDS.)

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Personal Stories & Reports (revised)

T-Shirt and Gift Merchandise

Chronic Fatigue Syndrome

Environmental Illness

Fibromyalgia

Multiple Chemical Sensitivities

Nap Realities Designs

Articles & Resources

PWC Hallie Kretsinger’s Watercolors Raise Money for CFIDS

The story of how PWC Hallie Kretsinger’s watercolors have helped in the efforts to raise money for CFIDS.

Creating hope with ‘happy post’

An article about a UK teenager with CFS — Vikki George — who started the Post Pals service for sending postcards to sick children.

Post Pals – Post a smile on a sick child’s face

Post Pals — the Web site for the “postcards for sick children” service founded by teenage CFS victim Vikki George.

Hollywood Legend Blake Edwards, PWC

Information on Blake Edwards, a PWC for more than 20 years, and his honorary Oscar, plus links to a video clip featuring Edwards’s comments about his struggle with CFIDS from “I Remember Me.”

A dead horse rescued me

An interview with Laura Hillenbrand, author of Seabiscuit.

Author of ‘Seabiscuit’ endures rough ride

An article about Laura Hillenbrand, the author of “Seabiscuit” who has CFS. The article was written after the publication of her book and shortly before the release of the film based on the book.

Betting on Seabiscuit

An article that originally appeared in the December 2002 issue of Smithonsonian Magazine about how, despite her chronic fatigue syndrome, Laura Hillenbrand beat the odds and wrote a bestseller.

CFIDS Advocate Tom Sheridan

Tom Sheridan of The Sheridan Group is a Capitol Hill lobbysit and advocate for CFIDS causes.

Spotlight on Dr. Lucinda “Cindy” Bateman

An article about Dr. Lucinda “Cindy” Bateman, a doctor who (as of 2005)  has spent more than 15 years working with patients who have CFIDS and Fibromyalgia. Dr. Bateman is the co-founder and executive director of OFFER, the Organization for Fatigue and Fibromyalgia Education and Research.

SupportME.co.UK

Established by a recovering M.E./CFS sufferer, this site is an online resource for Myalgic Encephalomyelitis, Chronic Fatigue Syndrome, Post Viral Fatigue Syndrome, and Fibromyalgia resource.

Chronic Fatigue Syndrome? or Chronic Mercury Poisoning?

Jeff Clark’s personal site that includes articles about his claims he was cured of Chronic Fatigue.

Personal Stories

Chronic Fatigue Syndrome robs its victims of their chances to lead normal lives. These are first-person PWC accounts of how devastating the illness has been to the patient, written on a very personal level, often with details about how CFS / CFIDS / ME has affected family life and relationships, friendships, ability to work, social life, and other things that most people take for granted.

Quotes on “How Did Your Chronic Fatigue Syndrome Start?”
CFS Victims Relate Their Personal Experiences

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Whether you refer to it as Chronic Fatigue Syndrome (CFS), Chronic Fatigue Immune and Dysfunction Syndrome (CFIDS), or Myalgic Encephalomyelitis (M.E.), the name alone cannot convey the devastation brought about by having to cope with this condition. The “fatigue” in the name refers to much more than just being tired. Those who suffer from this condition experience a fatiguing condition similar to how one feels when you have the flu. Only with the flu, you eventually get better. Imagine dealing with those muscle aches, the weakness, headaches, and other symptoms on a daily basis and you know how someone with CFS feels on a good day.

For more information, see: What is Chronic Fatigue Syndrome?

One of the most difficult things to deal with when confronted with a Chronic Fatigue Syndrome, Fibromyalgia, or Myalgic Encephalomyelitis (M.E.) diagnosis is finding the support you need. This is especially difficult because your family and friends may be having difficulty understanding the changes in you — especially when you don’t understand those changes yourself.

Articles & Resources

Instructions on How to Form a Support Group

eHow: How to Form a Support Group

Easy Instructions on How to Start a Support Group

Index for the above T-Shirt and Gift Idea Design

Fibromyalgia, Chronic Fatigue Syndrome, and Myalgic Encephalomyelitis Support Groups

There are support groups throughout the U.S. and the world who help those who suffer from Chronic Fatigue Syndrome and/or Fibromyalgia learn ways to cope with those devastating conditions. The sites mentioned here provide contact information for those groups.

Chronic Fatigue Support Groups in the United States

This page provides links to Chronic Fatigue Syndrome support groups in the United States.

Chronic Fatigue Support Groups Outside the United States

Links to international Chronic Fatigue Syndrome (CFS, CFIDS), Fibromyalgia (FM, FMS), and Myalgic Encephalomyelitis (ME)  support groups (i.e., support groups outside of the United States).

For Parents of Sick and Worn-Out Children

Web site maintained by Frank Albrecht, Ph.D. on bluecrab.org that offers support and resources for parents whose child or children have Chronic Fatigue Syndrome.

Google Directory of Chronic Fatigue Support Groups

The Google Directory to Chronic Fatigue Support Groups currently lists more than 500 online and local listings.

Google Directory of Fibromyalgia Support Groups

The Google Directory to Fibromyalgia Support Groups currently lists more than 200 online and local listings.

Canadian Support Groups:

(Those who live in Canada can find help — or directions on where to find help — here.)

More Information on Chronic Fatigue Syndrome (CFS, CFIDS), Fibromyalgia (FM, FMS), and Myalgic Encephalomyelitis (ME) Support Groups is a post from: Chronic Illness.org

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United States Chronic Fatigue Syndrome (CFS, CFIDS), Fibromyalgia (FM, FMS), and Myalgic Encephalomyelitis (ME) Support Groups is a post from: Chronic Illness.org

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