Letter to Ginger
Dear Ginger,
Susanna sent me the link to your article on living with fibromyalgia. She witnessed me, her mother, struggle for her entire childhood with the symptoms you described. I am spurred to finish writing to you after having just seen a very discouraged woman on Dr. Phil who was diagnosed with it.
The MD who was a guest on the show offered no real solutions. She repeated the recommended drugs for sleeping, depression, inflammation, and muscle relaxants, then gave vague suggestions for managing the symptoms emotionally-a veritable pat on the head. As with all of us who have experienced this syndrome, she was told there is no cure.
I am writing to you because I understand what you are going through and once depended solely on my courage and emotional stamina to see me through my days, months and years. I lived with the whole package for more than thirty years! I suffered terribly and was profoundly confused and alone in my ordeal. In fact, I went to Dartmouth’s medical library to find out what was wrong with me by reading journal articles. It was there that I first saw the word fibromyalgia. At that time, the doctors had said that I had fibrocytis.
From the age of 20 to 53, certain, relatively gentle activities could send my body into a physical reaction for multiple months or even years afterward. I lived with spasms across my back and chest that felt as if a shark had taken a bite out of me and was flailing me around. I struggled with depression. I walked with a cane for a number of my early years with the affliction. My nose and cheeks were always fiery red, and I was chronically constipated. Every night I coaxed myself through the pain and into sleep. I was unable to drive a standard shift because it was too much to operate the shifter. This, not to mention the agony involved in twisting around to buckle my seatbelt, was relentless!
When I was finally diagnosed, the doctors were still divided on whether it was “in my head” or real. I could see that in their care, I would get nowhere fast or possibly even worsen. I felt time was of the essence and was unwilling to ride out those years of their debate.
It incensed me that they admittedly had little understanding of what the problem was, yet would squelch my optimism by telling me it was progressive and incurable! This seemed arrogant and unfair to me. If there were unknowns, then there was hope. I vowed to protect myself from even the suggestion that what I had was incurable.
This is my reason for reaching out to you. The quote from your doctor in your blog piece is not necessarily true in my experience. And it is an unhelpful thing to be told. Particularly since you, at least partially, measure yourself through your physical prowess. Who wouldn’t mourn after being told that all you can hope for is to build yourself up to the workout intensity of your Grandmother!
Our attitudes and beliefs feed into our reality. It is important to have faith in the awesome ability for life to repair itself. Don’t believe in the illness. It is not a sentence. There are still many unknowns. It is approachable and dynamic, with connecting parts that can be addressed individually, which feeds back to the whole. We are all in a learning process regarding it. And no one has the right to emphatically state that it is incurable.
One of the most difficult aspects of my life during the time that I was ill, was to lose my faith in the powers that be. I felt I had been betrayed. It was scary to turn in a new direction toward the unknown. There were fewer options then and I felt like a renegade seeking help outside of the only medical system I was familiar with. I wondered if my exposure to these “unknowns” would alter me and make others think I was weird or arrogant myself. I wasn’t inherently interested in branching out in this way. Nor did I like to research things. But in my desperation, I learned to do many things that I did not want to do and eventually found my way back to health.
If you will take it, my advice is to keep learning and to take some risks with new healing modalities. There are now many, many brilliant and caring healers out there doing their respective crafts. I approached my “dis-ease” from every angle. I believe concretely, that stopping eating gluten contributed. It’s now been seven years since I cut it from my diet. This, of course is not a contributing factor for you. What amazes me still, is that we are all unique organisms-even within bloodlines. My pain syndrome and what has caused it may be different from yours.
At the top of my list is my on-going work with a skilled homeopath. This healing art used the idea of “provings”to collect a rich data base of effects of certains substances on individuals. It is as scientific as western science but requires that one suspend their need to understand the direct causal effect of a stubstance that is too miniscule to measure. It is actually working with the energy fields of substances at dilutions that many people cannot accept because the unseen is too unfathomable for them. As a person who spends much time in nature, I am comfortable believing that things that we cannot measure or see are actually at play everywhere and at all times and with great powers to effect us. Homeopathy is widely accepted all over Europe. It was deliberately severed from the American Medical Association sometime in the middle of the last century when double blind studies became the sole measure of what would be used in the western medical system. Homeopathy was used here up until that time. It originated in Germany, spread throughout Europe and is readily prescribed to this day. One picks up their remedies in the pharmacy, just like we do here with prescribed drugs. The science of “provings” used to build the database for homeopathy is an incredible database o every concievable nuance of the human condition. I have seen it work- that’s all I can say.
I worked with several acupuncturists, psycho-therapists, shamans, and kinestheologists- all of whom were phenomenal diagnosticians and sympathetic, but not impressed by my illness. Never was I told that I could not heal from what was ailing me. The attitude is entirely different under the care of these devoted and highly competent healers.
I took the advice of a naturopath to take hot showers followed by cold. I have been up to this chilly practice for 25 or so years and love the way it makes me feel to this day. I juice greens and fruit as a regular part of my diet and about seven years ago, actually found a coach to take me through five, challenging weeks of only drinking strained, fresh juices. This gave my system the ultimate break by requiring very, little energy to digest, then cleansing my blood with readily available nutrients. The almost immediate relief of my symptoms was very convincing. I could see and feel that there was a direct relationship of my diet to my pain and inflammation.
Finally, my research brought me to another area of controversy that for me remains a matter of common sense. I had all of my silver and mercury fillings replaced with non-toxic compounds. I had had very poor dentistry as a child and was walking around with lots of mercury fillings in my teeth. It’s hard to believe that the practice of putting such a highly toxic substance in the mouth of young children had not been a suspect until very recently. To me, it was a no brainer to have them replaced. Since then I’ve learned that now the practice is reserved for the less advantaged only, since it is still the cheapest material for fillings.
As you can see, I never found a panacea, but the syndrome, in my case, seems to have run it’s course. I believe my openness to new ideas, my hope, and my perseverance had everything to do with that.
An pivotal moment in my quest to find answers came with an encounter with an acquaintance who had the same symptoms as me. It was when she eagerly pulled back her shirt to show me the welts on her upper back, that I finally closed the door on seeking help through the western medical model. Looking for relief, she had overdone it with a heating pad, and had exacerbated the inflamed muscles and connective tissue, leaving multiple, angry looking welts. She told me that she had literally begun to bang her head against a wall in her despair. Then, she showed me her pillbox. In it were all the things that I, at one time, had been prescribed. The usual drugs to address the four, “unrelated” symptoms that plagued us. Next to these, were small, blue, One-A-Day vitamins which had also been prescribed.
The inadequacy of the one a day vitamin was absurd, in the face of this women’s suffering. And the denial that vitamins or nutrition could have a positive impact was apparent in the metaphor of her pillbox. It hit me that it should be the other way around. Nutrition first, drugs last!
I have come to believe that many diseases are curable. I began to pay more attention to people with positive testimonials. I examined my immediate environment and looked to my past for clues to why my body was in a fight/flight mode that would not turn off. I had to develop some sort of faith in order to trust that there would be improvement. And I had to begin to trust the originality of my thoughts and intuition to guide me.
I used common sense to wade through the world of “alternatives” and quickly found an entirely new belief system waiting for me. It was always there, of course, I just hadn’t tapped into it. This is what life will do. It forces us to expand, to remember how vast, and mysterious it is. There are answers to our questions but not always where it is comfortable to look.
Indeed, my quest to feel better has changed me. I did find the faith necessary to carry me through, and I do believe that all living things are in a continual process of change that aims toward health and healing. The mystery continues for me still, since I don’t know what exactly to identify as the final key to my healing. The important thing is that the acute and frightening prospect of living with debilitating pain, stiffness, depression, and inflammation is no longer.
Everyone’s life journey is unique. My hope is that you will consider yours as one of improving health and not as a bystander to the doctor’s predictions. Healing itself can be concrete or a mystery. There are thousands upon thousands of cases of people who have healed from diseases after being told they were chronic or even fatal.
My approach was to get as clean as possible, mentally, physically and spiritually, if you will, then to see what happens. I am 57 now. My nose and cheeks are no longer bright red. I’ve been pain free for about four years. I continue to feel better with each passing year. I exercise with little physical impunity and have regained the luxury of forgetting that I exerted myself on previous days. I have a sense that I am moving toward even greater health, rather than the other way around.
You will find your way. I am sure of that. And you will feel better one day with a renewed sense of purpose and deeper knowledge on all fronts. I wish you the very best. And please, if you would like to know more details, or to simply vent, I am always happy to be there.
Yours Truly ,
Lisa Burke
HYPERLINK "mailto:Lisaclaraburke@gmail.com" Lisaclaraburke@gmail.com
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