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

  [ 193 votes ]   [ 6 Comments ]
By Pat Gurnick, CLC* • www.ProHealth.com • December 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. 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.

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.cushings-help.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 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. 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.

Controlling the Remission-to-Relapse Seesaw

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.

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.



    Please Discuss This Article:   Post a Comment 

    Response to "One Woman's Story of Resilience"
    Posted by: dem2008
    Dec 24, 2007
    I read this article as the subject matter appealed to me. I was then disappointed, as I find I so often am, by articles such as this one. I have tried everything possible to get well. I have had CFIDS/ME and FMS for about ten years now and still have many days when I am bedridden. My problem with this article and others like it is that I pick up an implication that somehow, we are responsible for not getting well from these diseases that have no universal cure. If there were any way that I could be well by now, I would've found it, as I have searched, read, researched, networked, tried various medical authorities, and still, I have horrific, debilitating fatigue and frequent memory loss, along with chronic pain that is absolutely all over my body. I guess that I just want affirmation for those of us who do our very best to survive these diseases and just get through each day the best we can, even though we have not been able to reach the as of yet unattainable healing. I so miss all the things that these dds have taken from me and I truly think that these dds are so unique to each individual that the "cure" or any healing or progression in healing is so often not to be found or completely different from person to person. I pat myself and others like me on the back for hanging in there, doing everything within our power to get well, even though we haven't been able to. I feel like it's been a marathon of coping and survival skills and I could certainly write a book about this undesirable journey, as I know many others, who, like I, have chronic acute pain with no relief and days in bed if they go to one event away from home, could also write.
    Reply Reply

     
    Response to One Woman's Story
    Posted by: fredswife
    Dec 27, 2007
    Dem2008, I am completely new to this site. I have had FM for many years but only recently did the illness become debilitating enough to put me flat of my back. I agree with your opinion about this article. I, too, have tried anything I could find for lengthy periods of time (my family would say "just give it time") to no avail. And now, I am looking at filing for disability benefits. I live in a rural area where no one knows the kinds of treatments the author is talking about and if I were to find them, my insurance company would likely not cover them. I requested a listing of doctors for my state who work with FM and received a list with a support group leader and a physical therapist in driving distance for me on a good day. Different resources are available in different parts of the country and different human bodies respond differently to any kind of treatment. I am not a quitter and I possess plenty of "follow through", yet I hurt with a pain that is grinding me down, wear a mantle of fatigue that brings me to the ground and am so unable to think that I have lost my credibility with my family, professional colleagues and my clients. I do not know what else to do. My family doctor stays as up-to-date on the illness as he can but there is not even a rheumatologist around here. The infectious disesas group won't deal with CFS-FM and the neurologist I consulted with a few years ago accused me of drug seeking behavior and told me to just take ibuprofen. I do keep plugging away and continue to search for answers. I just don't know where to look anymore and it is disheartening to read an article with such wonderful news (I am truly happy for the author) that seems to imply the old "if I can do it anyone can do it" when that is just not true. I will keep on trying and putting one foot in front of the other because there is nothing left to do but that. Thanks for the opportunity to vent.

     

     
    This is a real illness!
    Posted by: growthofspirit
    Jan 5, 2008
    Thank you for giving your honest feedback. Your fighting this horrible disease, and each day you choose to live is an accomplishment. This is a feat worth recognition for this is no easy task! I understand. I was debilitated from this illness. I have been there too. I do believe this is a real illness, and you didn't cause this. We don't know the cause or the cure! All you can do is continue to trudge through numerous doctor visits (often being treated with disbelief); implementing many health protocols. I didn’t know if I would ever shift in my health, which was a slow 20 year span. Each person is so individual in how they respond to the treatments, and if they are able to get access to the resources. Suffering and agony, experienced from hour to hour, day to day. I tried many medications and holistic treatments, and I was in a desperate situation trying anything that would help, as we all PWC's are! The battle I expressed in my article was my personal experience, and I don’t expect others to follow my path and than they are in remission. Again, it is such an individual process, and I do hope you manage to uncover an effective holistic or medical approach for you. Warmly, Pat Gurnick

     

     
    Thoughts
    Posted by: patches10025
    Aug 8, 2008
    I agree with you. Why don't you look at this website. I believe a lot of people have been helped by changing their inner terrain by some rather simple methods...and this protocol is very inexpensive! Good luck. Bert http://www.curezone.com/forums/f.asp?f=740

     

     
    CFS/FM
    Posted by: ladybugmandy
    Dec 25, 2007
    hello. i have had CFS for 15 years and started seriously seeking treatment for almost 1 year (no doctor in my area believed me or wanted to help me eariler on).

    i suspect that perhaps the holistic approaches have a better chance at helping if you start them earlier on in the illness.

    just a thought...

    all the best sue

     

     
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