I’ve written a bit about health over on Cage Free Family today and thought that I ought to post it up here.
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I’ve written a bit about health over on Cage Free Family today and thought that I ought to post it up here.
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“US health care spending reached $1.6 trillion in 2003, representing 14% of the nation’s gross national product.26 Considering this enormous expenditure, we should have the best medicine in the world. We should be preventing and reversing disease, and doing minimal harm. Careful and objective review, however, shows we are doing the opposite. Because of the extraordinarily narrow, technologically driven context in which contemporary medicine examines the human condition, we are completely missing the larger picture…A definitive review of medical peer-reviewed journals and government health statistics shows that American medicine frequently causes more harm than good…What you are about to read is a stunning compilation of facts that documents that those who seek to abolish consumer access to natural therapies are misleading the public. Nearly 800,000 Americans die each year at the hands of government-sanctioned medicine, while the FDA and other government agencies pretend to protect the public by harassing those who offer safe alternatives.”
Death By Medicine by Gary Null, PhD; Carolyn Dean MD, ND; Martin Feldman, MD; Debora Rasio, MD; and Dorothy Smith, PhD
I’ve just had a member of the board of the Fibormyalgia & Chronic Pain Association publicly dismiss me and warn people against anyone claiming to have cured their Fibromyalgia. Her reason: If there were a way SHE would know about it. It seems that in order to have truly eradicated my FM I needed to have held a press conference and been validated by the all knowing Association. Not that I think they would have paid me any attention…. after all, where would someone like that be if people suddenly ridding themselves of their pain and symptoms all on their own. Otherwise they may have noticed that there a quite a few people claiming to have cured their Fibromyalgia. A quick #Fibromyalgia search on Twitter will quickly overwhelm you. You could get buried for days following the symptom elimination links on the internet.
But, to be fair. Let’s just be more impeccable with our words from now on. “Cure” is a word that is now owned mostly by the establishments that have done little but tell people that they need millions of dollars to “find a cure” but never have. Let’s let them have the word. We don’t “cure”. We “Heal.” We “Eliminate.” We “Terminate.” We “find the way to live free of symptoms and return to a level of health that we may not remember ever having had.” We cast out, count out, cut out, defeat, discharge, dispense with, dispose of, do away with, drive out, drop, eject, eradicate, evict, expel, exterminate, get rid of, knock out, phase out, put out, rub out, rule out, set aside, shut the door on, slay, stamp out, take out, waste, or wipe out.
We don’t “cure” We Annihilate.
While we are it, let’s look at two more words. Just to be clear…
Heal:
Rebel:
I’d like to warn you all to be very aware of any one or any organization telling you that something isn’t possible. It’s always “impossible” until someone does it. Then, somehow, it’s still impossible until they do it.
Rebel! Take control of your own health!
Oh, and let’s not forget to be clear here:
I am NOT a doctor. I have NO legal right to tell you what to do. In fact, you would do well to always CHECK WITH AS MANY SOURCES AS POSSIBLE before you do anything to your body. Check with your acupuncturist, your doctor of oriental medicine, your certified herbalist, your nutritionist or any healer of your choice.
What I am is a person who suffered for nearly two decades; buried alive beneath a crushing “disease” and drowning in treatments that always made me feel worse and often added new symptoms. If Fibromyalgia where caused by what the authorities suggest then there would be little hope. But, as usual, symptoms are being mistaken as causes. There are root causes alright and they can be “eliminated.”
What I am is a busy mom, a survivor, a homesteader, a traveler, an artist and a person who has carved out time to offer up anything that I have to share in response to the hundreds of emails I’ve received asking for just that. It’s taken me three years to put this together. Three years to tear myself away from the new found ability to LIVE my life and return to thinking about something that I never intend to experience. I hope you find what you need here to help you go out and heal yourself.
I thought I would post a link to the mini documentary that I was the subject of a few years ago.
It began when I was contacted by a graduate student from the University of Texas who was wanting to make a documentary. The premise was telling the story of surviving life in America as a family dealing with chronic, debilitating illness. We did not know that during the course of the filming I would discover the secret and finally cure myself of said disease.
Perhaps it was putting a spot light on what we were dealing with, perhaps it was serendipity, I don’t know. I’m just so very glad that it turned out to be called Healing Fibromyalgia rather than Living with Disease in America. Oy. I never watch it. I haven’t watched it since the first time. I think I have always been afraid of jinxing myself. I think I have always been afraid, unwilling to look back for this reason. This is why I could not write about healing from Fibro until I was in the deepest throws of it again.
I have always believed that everything happens for a reason. I have wanted to make this site for three years and I am finally doing it. I am grateful to be making a journal of what it’s like to go through this, of what I have to do and what is hard to do.
Anyhow, here’s the video:
I think I have a handle on the pain again. It doesn’t come often anymore. There are the threats, the little twinges that make want to panic… but so far I’ve kept them from going any further. I’ve been taking the St. Johns Wort, Skullcap and Chloroxygen (have I mentioned that yet?) at least three times per day, and have just begun adding in Ashwaganda.
I’m tired. Most all of the time, I’m tired. I realize that I’m still not prioritizing sleep like I need to. I stay up too late, despite what my body is saying about it. I sleep in in the morning, but fitfully disturbed by the goings on, so that it doesn’t make a difference to how I feel. I fail to take a nap when my body says that it’s necessary.
I am realizing how much I need sleep. When I kicked the Fibromyalgia in 2008 sleep was a top priority. I kept the lights off, sticking with candles, and this helped me realize when the day was over and it was time to let it go. I rarely stayed up past 10, and usually went to bed just after the kids. Silence is silence whether your awake for it or not, and the world did not come to an end when I put sleep as the number one priority.
I’ve been drinking a few cups of coconut water every day, and got a humidifier to help with staying hydrated. It makes such a big difference. Even when I think I’ve had enough, I always find that downing a quart of water or two when the pain starts to rise can make all the difference.
I remembered recently that in 2008, as I was coming out of the FM I was taking California Poppy pretty regularly. I haven’t tried that this time, though I’m not sure why I feel resistant to it. Strange. I was so much sicker then than I’ve let myself get this time. Stupid, really, to let myself get this far when I know how to make it gone, but it is what it is. I couldn’t walk then. I sometimes worried that the pain would rise and I would finally start to scream with it and not be able to stop. I was afraid that the pain could literally break me in two. That there would be no limit. I think it was this fear that led me to the Buddhist writings on end of life pain. The common depiction of cancer was all that I knew that was like the pain of Fibromyalgia, so that is where I started. When I was diagnosed, almost two decades ago, no one knew what it was. Now everyone knows. There are drugs specifically for it. Billboards and commercials. This scares me more I think.
I’ve been eating tamales from a cart in town. I shouldn’t, and I know this. I don’t know what is in them…. what kind of oil they use, what kind of corn, what contaminants could be in them. It doesn’t matter really. I know that cornflour it too taxing and I should stay away from it. It’s just like me though, to get away with as much as I can. It’s harder for me to convince myself of how much happier I am living a life of food deprivations, but filled with energy, vitality and ease of movement. It’s too easy to fall into what I know. To allow the pain, to accept it, to take the little pleasures where I can and believe that that is all that life can hold for me.
This week I’m focusing on keeping a quart jar of water with me all the time and refilling it at least three times before I go to bed. And of not trying to drink two of them when I should be asleep already
I’m focusing on the life I want rather than the cheap thrills of food that will wear me down and entertainment that will keep me up when I should be sleeping. I’m grateful that I dumped the TV so many years ago that I won’t ever bring it back and there is one less obstacle.
I’m seeing a physical therapist that is going to help me design a “workout” that my body can handle without causing pain… stretches and bends, simple things to begin. We found one that would trade with us so that we don’t have to try to finance more things for my health.
I ran out of fermented cod liver oil about a week ago and I notice the difference. I’m glad that the new bottles just arrived. It gives me energy and eases the pain when it threatens to flare.
I really need to get back on with the herbal infusions. I ordered the herbs from Mountain Rose Herbs, and they are on their way. It’s just a matter of making the brews each day and then drinking them.
Sleep, water, coconut juice, water, herbs, water, sleep, water… recipe for better days… I don’t know how I did it all before, not knowing how it would turn out… not knowing if I’d ever be free from the misery, because it is so hard now, even though I’ve done it already… even though I know that I will be free of it again.
To our health, Rebels
I became aware at a fairly early age that I did not sleep like other people. It was a difficult thing for me. Difficult to fall asleep, difficult to stay asleep and difficult to wake up. As a young girl I loved the late night fun of a sleep over, but hated, hated to stay the night. I could never get to sleep, I woke up all night, failed to get back to sleep and finally woke up exhausted and wanting nothing but to crawl into my own bed at home. When I hosted sleep overs I made it clear that sleeping bags were to be brought and no one would be trying to share the bed with me. Sleep was already a major issue for me.
I traveled across and out of the state to show dogs with my aunt. I never slept. We often left before dawn and I had only just fallen asleep. I couldn’t sleep in the hotels. I couldn’t sleep when visiting relatives. I just couldn’t seem to sleep.
By the time I was 12 I was already taking prescription drugs to “treat the insomnia, depression and fibromyalgia”. It never really helped. When my first baby was born I was awake for 6 days straight to say nothing of the attempts at finding sleep between night nursing sessions, teething, etc. By the time I was 23 and he was 1 I was so deeply, painfully, awfully tired that I submitted to a prescription for the well known sleep drug Ambien. A couple of years later I had a prescription for more than double the recommended dose and was still exhausted. All. The. Time.
The pain? It was out of this world.
It was during this time that I became aware of two things: one, that people who experience Fibromyalgia almost never achieve Delta wave/Stage IV/Restorative sleep, and that an experimental drug called Xyrem (also known as the illicit date rape drug, GHB) was now available for treatment of Excessive Daytime Sleepiness in people with Narcolepsy and being tested as a treatment for Fibromyalgia. The belief was that both disorders are caused by the lack of proper sleep cycles. It was also said that this was the only drug known to cause State IV sleep and that most others actually prevent that all important stage of sleep.
After convincing my doctor that it was for me, he had to become a registered Xyrem prescribing physician, write the prescription to appear as though it was being prescribed “on label” so that my insurance would cover the $3,000 per month prescription, and give me the benefit of the doubt in my ability to figure out how to use it, as there were no real guidelines. It was a terrifying, sickening and painful process, but after a few weeks I noticed that though I was still exhausted, lost almost 30 pounds and had intermittent shakes, I was without pain. For the first time in memory I was without pain.
I described it to my husband when the realization came upon me. As we were riding in the car I told him that I was “feeling funny”. I wasn’t feeling bad but I was definitely frightened of this wholly different feeling. It was through trying to describe the feeling to him that I realized that what I was experiencing was a complete absence of pain. “It feels like the world used to be made of cold, sharp steel. Everything, clothes, beds, the air, it was all cold and sharp. Now it feels like everything in the world is soft, like butter.” This was the best way that I could explain it. It was like the softness of a warm knife into butter had become me. I wept. Sleep. Who knew.
Almost one year to the day later. I conceived my second baby and the gig was up. This was not a pregnancy or breastfeeding friendly prescription. I’m not sure I can describe the full belly feeling of fear that took hold of me when I realized that I was going to be quitting the prescription and that the pain would likely return soon after.
I had to find another solution. Forfeit was just not an option. Now that I knew how it felt to live without pain I could not consider a return to the old life.