How I Survived Chronic Illness – One Woman’s Story of Resilience

[Guest guest]

by Pat Gurnick, CLC*

ImmuneSupport.com

12-10-2007

Pat Gurnick is a Psychotherapist and Certified Lifestyle Counselor based in

Boulder, Colorado – with a specialty in ME/CFS, FM, and MCS patient education.

Pat’s stronger health status today, after years of debilitation with these

illnesses, is built on her relentless pursuit of insights from the country’s

leading specialists. Her story of survival is studded with links to resources

that she hopes may help others to help themselves.

I will never forget the month and year I came down with an illness of unknown

origin. The month was January, the year was 1990. I lived in Los Angeles,

California. My life was never the same after that.

What caused my sickness? Perhaps it was an environmental toxin.

I say this because at the time I was exposed to pesticides. My car had an

exhaust problem so I naively drove with the windows open to blow the exhaust

back out again. And one night while driving home from my night job, I drove

through an aerial pesticide spraying for fruit with my car windows open. This

spraying continued for a total of 12 times over the next five months because of

a pandemic Mediterranean fruit fly (Medfly) infestation in fruit crops. (See the

Time magazine article on the malathion spraying - " Medfly Madness”.)

Subsequent to this chemical assault, my immune system became dysregulated. I

developed debilitating fatigue, flu-like symptoms, swollen lymph nodes, fever,

aches and pains, bladder and stomach problems, difficulty concentrating, and

major depression, to name a few.

The Search for Diagnosis & Understanding

This began the revolving door of doctor visits. I was lucky enough to find Dr.

Hyla Cass, MD, a specialist in nutritional medicine and now an expert in CFS.

She speculated I might have CFS and Fibromyalgia, and consequently referred me

to Dr. Murray Susser, MD, who was eventually listed in the Alternative Doctors

Hall of Fame and wrote the book, Solving the Puzzle of Chronic Fatigue Syndrome.

He concurred I had CFS and Fibromyalgia and confirmed the diagnosis of CFS by a

blood test called “Chronic Fatigue Syndrome Panel 2’” through Immunosciences

Lab.

Dr. Goldberg, MD, FAAP, a member of the Neuro Immune Dysfunction

Syndromes () Medical Advisory Board, also confirmed my diagnosis through a

brain SPECT imaging scan. This is helpful documentation if you are seeking

disability benefits.

Two years after I was diagnosed, I moved to a new apartment. I worked as a Drug

and Alcohol Counselor for Chronic Mentally Ill Substance Abusers at Brotman

Hospital in Culver City, California - my health rapidly deteriorating while I

struggled to find a way to remain functional on the job. Six months later, I

became bedridden. I continued different medical and holistic protocols to no

avail.

I had no idea the inner layer of my apartment ceiling was filled with

stachybotrys mold, also known as the ‘black mold’ - one of the most dangerous

indoor toxic molds, as well as other saprophytic fungi (molds) which produced

deathly mycotoxins.

According to Dr. Ordog, a neurotoxicologist in Los Angeles, and Dr. Gunnar

Heuser, MD, PhD, an Environmental Illness specialist, I subsequently developed

Cushings Disease/Pituitary Tumor from the mold injury; which was removed

December, 2003. (See my Cushings Disease Story at

http://www.cushings-help.com/patg.htm.) Dr. Bell, MD, author of the new

book Cellular Hypoxia and Neuro-Immune Fatigue, states that toxins can initiate

CFS: “Yes, mold and environmental toxins can definitely cause or initiate

ME/CFS. Somehow toxins affect the cytokines in a way similar to the classic

mononucleosis infection to set off the illness, " he explained in a recent

ImmuneSupport.com Q & A.

As a result of the Chronic Fatigue Syndrome intensified by the mold, I became

sicker. I could not read, write, drive, or balance well enough to stand up to

even bathe myself or make my food. I was debilitated from ‘neurally-mediated

hypotension’. My blood pressure was erratic. It dropped when I stood up and I

became light-headed and unstable on my feet. I was weak, in continual pain, so

much so that I could not even move my arm to brush my hair. For two and a half

years I needed outside assistance. I was so disturbed that my body and mind

would not work together in harmony, and so miserable that I wanted to end my

life.

CFIDS Association Offers Vital Connection

I was just a shell of what I used to be. I struggled to stay alive. I knew I

needed to find a reason to live. I needed to connect to other people who

understood what I was going through. I also knew 'being of service' to the

community, and being productive, would make my life have value. So I contacted

the CFIDS Association of America (http://CFIDS.org) and decided to become a

hotline contact.

It gave me something to focus on and a reason to believe that life was worth

living. Being a hotline contact was not an easy task. For a CFS patient, it was

like climbing Mt. Everest. I had to monitor my time and activities. Talking 30

minutes on the phone was exhausting. If I didn't watch my energy expenditure

closely enough, I could be bedridden for days on end.

I had to learn to live within 'the energy envelope’. I developed ways to settle

my neurological system, and give my body an opportunity to heal. That is, ways

to make my home environment user friendly, and to decrease my stress levels

through self-nurturing behavior: meditating, listening to soothing music, taking

a relaxing bath, receiving a massage, watching videos, eating pleasurable food,

etc. I needed to be careful that I didn’t involve myself in any dramas.

My body was already in a war fighting these illnesses, and I wanted to learn how

to turn this off; to give a new message to my body that it was safe. I started

monitoring people, places, things in my life so that I was not depleted of

energy. At first, it felt selfish, but then this new form of self-love and

empowerment helped me feel emotionally stronger. By learning how to be ‘friends’

with my body, I started transforming into a new person.

I knew I wanted to create a safe environment where other people with Chronic

Fatigue Syndrome and Fibromyalgia could feel accepted and share what was on

their minds, receive support, resources, and referrals to health care providers.

So I started the CEFCA Support Group at a local church. CEFCA stands for

" Chronic Fatigue Syndrome, Environmental Illness, Fibromyalgia, Candida, and

Allergies. " At first, because of my condition, I was not able to sit in a chair,

so I laid on the floor to facilitate the group. (For information about

Environmental Illness/Multiple Chemical Sensitivities, see the Rocky Mountain

Environmental Health Association website.)

St. Amand Protocol a Turning Point for the Fibromyalgia

At that time, I couldn’t even walk one block, I was so weak and in such pain

that every day my body felt like it had just been in a car accident. Nine months

after I began the group, September of 1993, I saw Dr. R. St. Amand, MD,

Director of the Fibromyalgia Treatment Center in Marina Del Rey, CA, for help.

He confirmed my diagnosis of Fibromyalgia and prescribed a substance called

guaifenesin (helps CFS in some patients). Within six months, my level of health

shifted for the better. After two years, I became pain free and I could jog

again.

During that time, out of necessity, I moved my support group to Kaiser

Permanente's hospital conference room. Due to the tremendous need for support

among CFS patients, more than 100 members were coming to each meeting to hear

top specialists in the field lecture, including renowned doctors such as Dr. Jay

Goldstein, MD, now retired, Dr. Teitlebaum, author of From Fatigued to

Fantastic, and others I have mentioned above.

I ran this group from 1993 to 2003. My commitment to serve the community gained

me 'Honorary Recognition Award' from the CFIDS Association.

Controlling the Remission-to-Relapse Seesaw

To this day, I remain in remission from Fibromyalgia. I have had a slow, gradual

increase in vitality. I learned how to “live within the energy envelope” [using

a simple energy level rating scale of 1 to 10], and how to pace myself [using

tools such as an ‘envelope log’] - attaining remission from Chronic Fatigue

Syndrome.

Initially, I went back and forth from remission to relapse, until I changed my

lifestyle. There is no cure, and the cause is still uncertain, but I have found

that once you take care of yourself by adapting your lifestyle, you can achieve

greater health.

Today, I have my life back. As a Psychotherapist, and 'survivor' of Chronic

Fatigue Syndrome and Fibromyalgia, I help others to develop and adopt strategies

to function better on a daily basis, with a focus on energy level management and

self pacing for health maintenance.

A Few Programs You Could Do At Home

You can have a better quality of life! Following are some relaxation and

educational programs that you can do at home:

CD, “Learn to Breathe” by Coy, http://www.inspiringyourlife.com

DVD, “Healing Rhythms” biofeedback guides by Wild Divine Project,

http://www.wilddivine.com

DVD, “The Advanced CFS/ME Recovery Programme by Ashok Gupta,

http://www.cfsrecovery.com

DVD, “Heartmath” stress reduction techniques, http://www.heartmath.org

CD’s to change brainwaves for health, http://www.centerpointe.com/

CD’s “Recovering from Chronic Fatigue Syndrome” by Dr. Collinge, PhD,

http://www.collinge.org/CFSaudios.htm

____

Note: This information has not been evaluated by the FDA. It is generic and is

not intended to prevent, diagnose, ameliorate, treat, or cure any condition,

illness, or disease. It is very important that you make no change in your

personal healthcare plan or health support regiment without researching and

discussing it with your professional healthcare team.

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