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 am well these days.  I am bemoaning the weakened body I am left with after such a long run of disability, but I am on the path to becoming strong and fit inside my now healthy body.  Yes, the muscle pain of exercise makes me nervous.  Any pain makes me nervous, but I am starting to trust the process and the difference between the chronic pain and symptoms of dis-ease and the ache of working long forgotten muscles and tendons.  I am an avid hiker.  I love it, and it never leaves me feeling badly.  I have been testing the waters of more aerobic exercise such as ballet, as well as strength building work in yoga and floor exercise.  Sometimes I need to take a break, and give myself space to deal with the emotional issues that come up with this.  There is fear, yes, but also anger, resentment, frustration, grief…

It has never been easy, but it has been worth it.  From the first decision to stop all prescription drugs to the last decision to start using my body again, it has been worth it.

As to the Fluoride I mentioned in the title, I’d like to share this with you.

A reader shared this with me and I admit that though I was aware of the many reasons to avoid Fluoride, I believed that it was limited to dental products and municipal water.  I never considered that I could have ever been experiencing Fluoride poisoning.

I did not know that it was added to pharmaceuticals from general anesthetic to antidepressants.  Over my years of prescription treatment, at the hands of my doctors, I was unknowingly exposed, chronically, to fluoride.  So much for Informed Consent.  Sheesh.

Before you begin I would like to say that I fully believe myself to be living proof, not only that Fibromyalgia is a disease of toxicity/poisoning and malnutrition, but also of it’s reversibility through diet, cleansing, removal of chemicals, additives, preservatives, and dyes from my life on the whole, and nutrient dense supplements.  Things such as herbal tinctures and acupuncture are what I relied upon to help me through the pain of the healing process.  They did not heal me.  The path that I have undertaken to remove Fibromyalgia from my life is taken by many people with equal success in their treatments of everything from Chron’s ,to Autism, to Cancer.  The human body wants to be whole.  It wants to be fed, and it wants to be unpolluted.  Most importantly it is a self healing miracle.  Given the chance your body can heal anything.  With a bit of research you can find at least one person to have recovered from all manner of incurable disease.

Without further ado, here are some links to start with:

This time I already knew what I had to do and began it all, cold turkey, at the same time.  The repercussions were pretty severe.  The detox was awful, and not knowing how long it was going to last was difficult to manage.  But, alas, a mere two days after I thought I couldn’t handle the severity of the symptoms anymore and went looking for help, they began a hard, fast decline.  So fast that I was left feeling like it couldn’t possibly have been as awful as I thought it was, or that it was just a lull and would come back.

It hasn’t.  Four weeks ago I took a big plunge and enrolled in a beginner’s ballet class for adults.  I won’t lie.  I was scared.  I almost backed out over and over again.  I almost left during class for fear that I was going to overdo it.  When the instructor told us at the end of class that we were now going to do one full minute of situps every part of my brain went NOOOOOOO.  No!  Bad idea!  Don’t do this!  But I did.  I did it.  I never expected that I could even do it, just that I would try and either hurt myself or plain not be able to DO a situp.  I simply could not believe it when I did it.  I got tears in my eyes.  The music ended, the class clapped, the teacher beamed at us and told us how proud and excited she was to do this class and we walked out the door into the sunny parking lot.  My family was waiting in the car, expectant, wide eyed.   The class had gone 1 hour and 45 minutes.  They couldn’t believe it and as I watched them watching me walk across the parking lot I knew in that moment that even if I did suffer the next day that it was worth it.  The way that I felt in that moment; the strength, the pride the freedom… even if it was never to happen again, it was worth it.

As if that wasn’t enough for a happy ending.  If that wasn’t just almost too much to take it… the next two days came and went uneventfully.  No flare ups.  Nothing that said Fibromyalgia.  I felt what I assume every other dancer felt the next day: the muscles that I hadn’t used before.  When I told my husband I did cry.  I cried because of the relief.  I really was so scared.  I cried because I felt like an ass.  I cried because I had lived without symptoms for sooo long and then made choices.  Choices that I knew I shouldn’t make.  I made excuses.  I felt guilty for where I had put myself again and where I took my family when I went there.  I cried for all the food I ate that polluted my body, for all the times I stayed up watching a movie instead of going to bed.  I cried for all the times I should have made infusion instead of buying a cup of coffee.  I cried and got all the crap out and then let it float away because they didn’t blame me.

It’s hard.  In the world we live in, in the culture we live in: it’s hard.  Even when you know, from personal experience, what you need to do – it’s hard.  And that’s okay.

I’d like to say that I won’t do it again.  That I’ll never let myself feel another Fibromyalgia symptom again, but I know that that’s a lie.  I know that it’s been a matter of weeks since I proved to myself that I have control of whether or not I experience Fibromyalgia and I STILL had an ice cream cone in the historic center last night while sitting with friends.

That’s who I am.  There is some part of me that needs to understand exactly, exactly what I can and cannot do.  Exactly how far I can go.  Exactly how much, how long… I just need to.   I first proved to myself that I could live for years without symptoms.  Then I needed to know how much of the restrictions were certain and how certain they are.  Now I know.  I really do.

I’ve learned some new things this time around too.  Playing with specific types of foods to see my level of sensitivity to them.  Watching which symptoms are affected by what choices.  Knowledge is power.  It’s enough for me to be able to say that I will likely never eat gluten again.  I will never eat anything that contains an additive, binder, or “naturally derived” adulterated ingredient again.

I want to do more than survive the ballet class.  I want to find strength and grace that I have never known.  I want to dance in the recital next year. :-p  Yesterday I hiked for one hour straight up the side of the mountain next to our cabin.  We barely stopped as the thunder clouds rolled in.  My kids wanted to make it “all the way to the top” and so did I.  Just as we reached the summit the sky opened up and rain poured down on us.  We were on a new trail with nothing beyond a sense of which direction would be a sure trail down (rather than to an impassible gorge).  We’re adventurous and never take the same trail down that we took up.  We follow the elk paths and we have real adventures.  It was another hour down the mountain via a valley that a spring fed creek ran through.  It was like a different world in there.  The ridges rising a hundred feet over our heads and the grass and flowers grown as tall as my daughter were so different from dry desert mountain all around it.

I want that more than I want any of the things that I can’t have.  I want that more.

To our health.

xoxo

Death By Medicine by Gary Null, PhD; Carolyn Dean MD, ND; Martin Feldman, MD; Debora Rasio, MD; and Dorothy Smith, PhD

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.

About four days ago I started to have this unpleasant tingle-hurt feeling in my lip where I found a tiny lump deep inside.  By the time I got home 5 or so hours later it was blooming into a cold sore such as I have never seen.  I have had about 5 small cold sores in the same spot over the past 10 years.  I know the drill and the look of this one was beyond my comprehension.  I knew it would be bad as it was clearly going to be some 6 times larger than anything I’d ever seen before, but I wasn’t really prepared for all of the symptoms of it to be multiplied so.  I spare you the details, but I’ll tell you that the pain literally brought me to the floor two mornings in a row.  On the afternoon of the worst day I nearly fainted from the intensity of the unceasing pain.  I’ve had three home births.  I can do a little discomfort, but this was wicked, searing, torturous pain that will likely have me quaking in my boot the next time I think I may be getting one.

Now that it’s winding down and on its way out I’ve got an absurdely large canker sore forming inside my lip near my gum line.

Oh the joys of detoxing.  The answer I suppose is to work the other lines of elimination a bit better… more detox baths, more skin brushing, more water…  Being that I’m still nursing little S, I cannot partake in any of the more rigorous detoxing methods, so this could drag out for me for a while.

I’m also planning to go ahead and get some blood work done with a naturopathic doctor or a DOM to see exactly what’s going on in my body and what I can do to ease symptoms and better support my body.  I’ll be meeting with a master herbalist as well to get the lowdown on what exactly I can and cannot take to aid this process of healing up my body.  This kind of thing is a bit beyond my family herbalist training.

Another thing that I have been thinking of, but not acting on is acupuncture. It was such a huge help through this process the last time and I went three times a week for several months.   We’re lucky enough to  have a group session clinic even in our small town and this is how I was able to afford the treatments last time.  As with anything, consistency and regularity make a difference when it comes to healing, and it would be best for me to get out there at least once per week right now.  However, even once per month would be better than nothing at all.

A little note: if you haven’t checked your household cleaning and beauty products with the Environmental Watch Group’s databases yet, I highly recommend it.  It is hard to clean up your body and begin the path of healing if the poisons are still coming in and piling up.  Also consider staying away from anything with Nitrates and Nitrites, even wine.  Wine is something that though I love it, I can really only handle one glass every few months without feeling badly.   When I’m in a state of regular illness like I am now and anyone just beginning would be it is best to stay away from it entirely.

I’m doing better with the sugar that I’ve been getting in my Alter Eco chocolate bars.  I’ve cut down to only one small square in the evening which equates to a fraction of a gram of sugar.  I’ve also added in a few doses of Motherwort tincture (5 drops) three or so times per day while the detoxing symptoms are present and leaving me feeling stressed and sleep deprived.

Are you out there?  How are you doing?

Having successfully healed from Fibromyalgia and it’s corresponding depression, anxiety, exhaustion, etc.  I know what I have to do.    You might think that this would make it easier.  And yet, I still struggle with disbelief, and the myriad of other hurdles that keep people from making the choices that they want to be making.   I know that I feel dramatically better when I drink herbal infusions each day, when I take my fermented cod liver oil and probiotics consistently.  I know that sugar makes me feel sluggish with bouts of depression, irritability and heightened sense of stress and fear, and yet, I still eat bits of chocolate bar almost every night; telling myself that because it is dark, organic, fair trade and unrefined it is okay.  Well, it’s not likely to kill me, but it’s not going to allow me the feeling of health and strength that I want so badly.   The sometimes intense cravings for baked goods haven’t subsided yet either.

The healthiest I have ever felt was when my diet was completely free from all grains, additives and sugar.  I drank infusion and many glasses of water each day, took my probiotics and oils, went for regular acupuncture treatments, went to bed at 9 or 10, and listened to a guided meditation as I fell asleep. I was not only free from all symptoms, but also filled with a sense of vitality, peace and happiness that I had no memory of having before.  Simple it seems.  Easy even.   But beneath these simple things lies many lifestyle changes and a shakeup of belief systems.  It also takes the kind of will power and energy that we already feel deficient it.  It’s simple, yes, but not so very easy.

Sometimes I need the reminders of why these things work… in so many words.  Always I remember the underlying lesson.  Always I remember about heavy metals, deficiencies, sensitivites, dysbiosis, candida, fungal and bacterial imbalance… years and years of research fuels the affirmations that I make, but sometimes, I need a little boost.  Sometimes I need to remember the exact why of it all.  Sometimes I need to get real with myself and remember that if I don’t get a different life with the same old choices.

I have the most intensly desire inducing memory of having total freedom not just from symptoms, but also from feeling like a slave to the “lifestyle” and a soldier against cravings.   Food became a side note to my life, a means to an end.  Yes, I enjoyed the food, I made things that tasted good, but all in all I left behind that feeling of need attached to it.  Meals were not the highlight anymore.  I didn’t need chocolate or coffee even, and could hardly remember why I ever thought that I needed them.  I was grateful for the immensity of the feeling of freedom that I had.  That it what I want to get back to.   I don’t just want to be disease free.  I want more than that.  I want to be back to the person that was so alive, so healthy that I stood out in a crowd.   I didn’t have to talk to people about how I lived because they were constantly asking about my skin… the thing they assumed was the source of my “looking so healthy.”  I want to be back to falling asleep easily, waking up refreshed and ready, and filled with a sense of possibility through the days.  I’m ready to let go of being irritable and tired, short with my family, fearful of doing things and tired of life.

We have never juiced before.  It’s something that I never really researched, seemed expensive and possibly unnecessary, but today we decided to give it a try.  Last year I watched a documentary called the The Gerson Miracle and juicing has been on the back of my mind ever since.  We are planting almost 1,000 square feet of vegetables and herbs right now and juicing seems like a reasonable choice for us at this point.  Miso soup with sea vegetables is another thing that I would really like to get into our lives, but I am taking it in chewable doses.  Right now I’m working to continue with going to bed at the same time every night, remembering to stay fully hydrated, drink my infusions and take my oils.  I am recommitting to eliminating the sugar completely and increasing my vegetable intake.

I’ve also started taking 2 teaspoons of Bragg’s raw apple cider vinegar mixed with a heaping teaspoon of raw honey, and 8oz of water.

Currently I have a series of days without pain and oppressive fatigue, but I’m still getting bouts of exhaustion, pain and general feelings of illness ever 5 days or so.  I’ve been without any pain relieving prescriptions for too long to count now.  Months I think.  I’m getting there, and oh god I swear when I get there I will not look back again.  I have learned my lesson.  Nothing that I want to eat, nothing that I want to not be bothered with is worth feeling like this.  I will do what it takes to be healthy and I will remember.  I wish so much that I had made some kind of journal of the process the last time, but it is what it is.  I am doing it now and I know that I will be damned if I forget again.

To our heath, Rebels, to our health.

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’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 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.