How I Survived Chronic Illness – One Woman’s Story of Resilience by Pat Gurnick,
CLC* (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.
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 -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. Michael Goldberg, MD, FAAP, a member of the Neuro Immune Dysfunction
Syndromes (NIDS) Medical Advisory Board, also confirmed my diagnosis through a
brain SPECT imaging scan. This is helpful documentation if you are seeking
disability benefits.
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.
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. Gary 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.cushingshelp.
com/patg.htm.) Dr. David 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 Of America Offers Vital Connection
I developed ways to settle my neurological system, and give my body an opportunity to heal. That is, ways to.. decrease my stress levels through... meditating, listening to soothing music, taking a relaxing bath, receiving a massage,
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.
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 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
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.
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. Paul 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. Jacob
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 of America.
Controlling the Remission-to-Relapse Seesaw
There is no cure, and the cause is still uncertain, but I have found for myself that once I adapted my lifestyle, I achieved greater health.
Today, I have my life back.
To this day, I rarely have pain from Fibromyalgia. As for Chronic Fatigue
Syndrome, 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 a better level of functioning. 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 for myself that once I adapted my
lifestyle, I achieved greater health.
Today, I have my life back. As a Psychotherapist, and 'survivor' of Chronic
Fatigue Syndrome and Fibromyalgia, I can help others develop and adopt
strategies like energy level management and self pacing to function better on a
daily basis and have a better quality of life.
A Few Programs You Could Do At Home
One very hopeful and helpful free resource that you can access online is the
book Recovering from Chronic Fatigue Syndrome: A Guide to Self-Empowerment by
Dr. William Collinge, PhD, in collaboration with Dr. Daniel Peterson.
Another encouraging self care book that can be purchased inexpensively used or
new and is particularly helpful for those of us who suffer from allergic
reactions and sensitivities is The Rebellious Body: Reclaim Your Life from
Environmental Illness or Chronic Fatigue Syndrome by Janice Strubbe Wittenberg,
RN.
Also, “Immune Restoration Handbook” by Mark Konlee,
www.keephopealive.org
And following are some fee-based relaxation and educational programs that you
can do at home:
CD, “Learn to Breathe” by Anna 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. William Collinge, PhD,
http://www.collinge.org/CFSaudios.htm
____
* Reproduced with permission of the author, Pat Gurnick, CLC. Pat is a
Psychotherapist and Certified Lifestyle Counselor specializing in FM, ME/CFS,
and Environmental Illness patient education. She practices in Boulder, Colorado,
and can be reached at http://www.caringcounselor.com.
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.