Quick update and Fluoride, oh my!

It's been a long time since I've posted.  I never mean it to be so long because this is so near and dear to my heart.  However, 16 of the past 20 years of my life were stolen by Fibromyalgia.  Freedom from that tends to lead to the absolute need to live life, forget about the suffering, and move forward.  This is what I've been doing.  It's hard to make myself sit down at the computer and think about, draw up, and write about something that I would rather forget ever happened.  I tend to make excuses, set false deadlines, and ultimately choose to go out, hike, play, travel, cook, whatever, instead.

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:

The Cause of Fibromyalgia

http://www.earthclinic.com/CURES/fibromyalgia.html#cause

Index of Fluoride containing Pharmaceuticals
http://www.slweb.org/ftrcfluorinatedpharm.html

Chronic Fluoride Poisoning Q&A

www.earthclinic.com/FLUORIDE_QA.pdf

High density sources of vitamins - yes, in FOOD.

http://www.healthaliciousness.com/most-nutritious-foods-lists.php

While I fully believe that most of our diseases today, such as Fibromyalgia, are a direct result of environmental poisoning, I never knew how insidious Fluoride had become.

The Past 5 Wks - Post Detox - LIFE RETURNS

Writing the details of what you're going through while you are suffering it can be a bit much.  It was for me this time.  If I was feeling well enough to write the last thing I wanted to do was recall the symptoms so that I could write about them.  This time around was hard.  Much harder than the first because it was done over a much shorter period of time.  The last time I began eating a fully organic diet a few years before I started eating a whole food diet.  The whole food diet was almost a year before I began the GAPS restrictions, etc.

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

Is American Medicine Working?

"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

Let's Be Clear

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:

–verb (used with object)

1. to make healthy, whole, or sound; restore to health; free from ailment.

2.to bring to an end or conclusion

3.to free from evil; cleanse; purify: to heal the soul.

–verb (used without object)

4.to effect a cure. <whoops there it is again! let's change that.  4. to dispense with symptoms

5.(of a wound, broken bone, etc.) to become whole or sound; mend; get well (often followed by up or over).

Rebel:

–noun

1. a person who refuses allegiance to, resists, or rises in arms against government or ruler of his or her country.

2. a person who resists any authority, control, or tradition.

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.

Detox blues

It seems that cutting the wheat cold turkey and adding in more bone stock and coconut oil are causing some serious detox symptoms for me and pretty minor ones for J.  First it was breakouts and dry patches on my face.  Then I started what seems to be a cycle of 4 or 5 days of increasing nausea, exhaustion, intestinal struggles, dizziness and that general "I'm getting the flu" icky feeling.  Then it subsides and I have 4 or 5 days of increasing health before I start over again.

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?

 

Walking the Walk

It is one thing to know what you have to do, and another completely to actually do it.  Consistency is a matter even beyond that.

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.

 

 

Healing Fibromyalgia

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:

[youtube http://www.youtube.com/watch?v=n8XB5ZWnLTA&w=425&h=349]

Ramblings for the week

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

Sleep - Part 1

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.

Update - Two Difficult Weeks

After the last post I was feeling dramatically better; expecting that if the improvements continued at that speed that I would be Fibro free again in no time.  Unfortunately, the improvements didn't continue as such.  I have not gone back on "the rules", but quite suddenly I started to get symptoms flaring up; pain, serious fatigue, itching, etc.

Looking at what I was doing, fearfully because of the rise in pain, I noticed a few important things.

One: the fear that rises up when I feel the beginning of the pain, if someone asks me how I feel, or if I accidentally leave home without anything for a pain flare up, the fear causes the minor beginnings to flare like blowing on a fire.  Fear/stress = pain when at this delicate stage.  When I am stronger and more sound this is not the case, but at this level of weakness and sensitivity to all triggers, it is a real problem.  It was actually my 8 year old son that helped me work through this.  Taught him well, I did :-)  He just said, "Well, mama, sometimes I feel afraid and then I get all of those 'afraid feelings' like sweating, and tummy ache, but then you tell me that there isn't anything to be afraid about and you help me feel okay about whatever is happening and all of those things go away so that being afraid isn't bad anymore. Then it isn't even there anymore. That's what you have to do."

He was right.  I closed my eyes, and forcibly relaxed my whole body starting from my scalp and working my way down and up again.  Then I made sure that I was breathing deeply and slowly, and starting visualizing things that made me feel happy or excited like a walk on a tropical beach (so different from the high desert where we live), a picnic by the lake with cake (it's a dream, there can be cake!), warm coffee - cup hot on my palms, etc.  After about 5 minutes I realized that the flare had subsided back to a minor sensation that couldn't really qualify as pain.  Without the fearful response to what this feeling means, it would likely have stayed there.  It made me wonder how much of my suffering is skyrocketed to severe pain because of the fear that it will progress to that.  I've been keeping a close eye on this and am finding a lot of truth in it.  In more stressful situations, it can be hard for me to keep a handle on how deep and firey the pain gets.  I have been working to tell myself, It's OKAY.  This is what it feels like.  You know this feeling.  Maybe it will get worse, maybe it will disappear... either way, the only thing to do is relax as deeply as possible.  Accept.  Know that it will pass.  Breathe, and don't tense up!  It's been helping a lot.

Two: Water.  Water is the next key point.  I have come to understand that it is at least as important as staying away from gluten and preservatives.  Any degree of low hydration will  result in pain for me.  And it will result in the most stubborn, deep, widespread variety.  For me this means a gallon of water every single day.  One day of poor intake, say a quart or two, will result in pain before the day is out (usually around dinner time) and if I don't remedy the situation I will wake up achy and at a difficult deficit in the morning.  Sadly I do this at least twice per week.  Living in the high desert I have to consider that missing some of the water I need is only going to add to the battle that I deal with everyday with the high, gusting winds, 8,200 ft elevation, desert arid air, sun exposure, and year round wood-stove heating (mountain temperatures).  I think of it like this:  I pretend that I am trying to keep a garden alive in the desert.  This requires constant watering, and reduction of anything that will dehydrate me, such as excess sodium, and certain foods.  When I'm dealing with a real dehydration situation, I help myself out and add some coconut water to the mix.  This increases the rate at which I can rehydrate without increasing the inevitable trips to the bathroom.

Sleep.  Oh, my, sleep!  It is so very important.  Quality, undisturbed, delta-wave sleep is necessary.  Without it I might feel okay for a few days or weeks, but I will be tired, and I will be ever so much more susceptible to all environmental triggers.   A thing to understand:  nearly every single sleep drug, antideppressant, anti-anxiety drug, and alcohol will dramatically reduce ability to achieve delta wave sleep or completion of a full sleep cycle.  Most will prevent it entirely.  Sleep is such a deeply, widely complicated issue I'm going to have to cover it over a series of posts.  I spent years and years battling this issue.  I first became aware that I did not sleep easily or deeply when I was about 5 years old.  I struggled with it until I was 27 and it rises up again and again when I don't stick to the "sleep rules".  I will have to cover those in another post.  The last five years have been overlapping issues of pregnancy, breastfeeding and nightwaking/teething babies.  It is possible to overcome a block as big as a waking baby to get the kind of sleep necessary, but it takes real dedication and a sacrifice or two.  It's worth it though.  Nothing will change your outlook on life and your strength against pain like quality sleep.

I'd like to touch quickly on detoxing/die-off symptoms before leaving you.  I realized about a week into the rising of symptoms that I was dealing with detox/die-off symptoms.  After making dramatic changes in my diet, like cold-turkey removal of all grains and sugar, I should have expected it, but somehow didn't.  Depending upon how long I have been abusing my body with things like gluten, sugar, carageenan, etc. I will experience a whole slew of symptoms ranging from mildly irritating to two days of feeling like I may be dying of cancer, unable to move, hardly speak, etc.  I had been abusing it pretty badly for a long time, so I got two days of the latter.  The pain was too severe to mask, even with pharmaceutical opiates and herbs combined, my stomach ached, the fatigue was deep enough to make it difficult to speak and remember to keep my eyes open.  My heart palpitated, my skin itched, my bones burned and I suffered breakouts all over my face and a few other enjoyable issues.  The thing to know:  given the opportunity, your body  will heal itself.   This will include a forceful removal of toxins through every avenue possible: kidneys, liver, skin, bladder, bowels...  It usually doesn't feel great, but proper support of your systems while it is happening can reduce the length of severe suffering to a day or two.   Watering your body like you have the flu, REST, vitamins, probiotics and essential fatty acids like those found in fish, (freshly ground) flax seeds, chia seeds, hemp seeds and especially fermentd cod liver oil will go a looong way to helping you recover more quickly.   Gently scrubbing your skin in a warm bath at least once per day and then oiling your skin with a quality, unscented oil like olive oil or coconut oil will help prevent rashes, breakouts, dry or rough patches, redness, itching and swelling.  Your skin is the largest organ of detoxification and your body's preferred first route.

I'll leave it there for now, and follow up with more detailed posts on all of these topics.

To our health, Rebels.  We can level this thing.

Update - Week 2 Beginning

We took a trip to Santa Fe this past week to pick up the pasture raised meat we buy from a farmer in West Texas.  It comes out to be ever, ever so much more nutritious than the meat we can buy at market, and even with the trip to Santa Fe it is considerably less expensive.  This time we brought home 82 pounds of meat and soup bones.

Because it is about two hours drive, and we have two small children and an infant, we prefer to stay the night,  take in the museums, and get the shopping done that we cannot do in Taos where we have only a small Walmart for most necessities.  This can pose a problem for a family that is working with severe diet restrictions, a budget and supplementation.  Sooo, we use an online booking site to score our favorite time-share hotel/condo.  The units come with a bedroom, full, stocked kitchen, dining table, and living room, for around $70 in the summer and $62 in the winter.  This allows us to prepare breakfast and dinner at our hotel and keep our food ready for packing a healthy, on the go lunch.

This time we opted for organic, homemade granola and plain yogurt with honey for breakfast so that we could just lounge in our PJs and have a lazy morning before taking in the town.  For lunch we had sliced Applegate Farms Peperoni, raw organic cheddar, rice crisp crackers, apples, and  oranges.  For snacks we had apples, oranges, dried figs, dried mango, raw almonds, pecans, peanuts and raisins.  Nichola had an extra snack of Wild Planet Sardines in marinara sauce and Quinn had the lemon variety.  They will each eat about 2/3 of a can and share some with Simone and Jeff.  Packed full of healthy omega fatty acids, and lacking in the mercury found in larger fish like tuna, this is a wonderful, not too expensive snack for them to be having.  I'll be honest.  I can't eat them straight.  Marinara sauce, or no, they wig me out.  I prefer to have them mixed in canola-free mayo with spices and served on crackers, just like tuna salad.

For dinner we took a jar of pre-soaked chickpeas and made soup.

Because of the fridge in the hotel (most come with at least a mini-fridge these days) we were able to take our cod liver oil, and I used my ceramic lidded coffee cup to take my tinctures through-out the day.  I found though that I only felt like I needed them once.   Sticking to "the rules" is helping a lot faster than I had expected.  I also noticed that the city water did a real number on the kid's skin, and everyone developed a stuffy-head feeling as we entered the city that dissipated as we got about 45 minutes outside of the city on our way home.  I guess there really is something to say about clean country air and water.

Since we've been home I have only taken my tinctures in the morning and evening.  I've been going to bed by 10pm and waking up feeling a lot less achy.  Today I'm definitely feeling just plain tired, but altogether not "sick".

I'm looking forward to homemade hot cocoa tonight and planning on a lazy night with a DVD (The Bucket List).  Neeka fell asleep (hopefully for the night) at 7pm.  She's been fighting a bit of tonsilitis.  Here's hoping that the baby will follow her by 8:30 and I can get to bed (post movie) by 10pm again.

To our health!

xoxo

Update - Week 1

It's been about a week with the aforementioned changes in place and there is a definite improvement.  I've been taking St. John's Wort and Skullcap tinctures every 4-5 hours and it's been sufficient to keep the pain in check for the past four days.

Friday was a pretty painful day and I wound up taking a dose of Vicodin in the morning while I had the kids at the park, which sucked.  I also had an 8oz decaf Americano on the way.  All in all not the best morning.  I over did it on account of the Vicodin, so that when it wore off a few hours later I felt positively wrecked.  Miserable.  I drank about a quart of water while we were out, but this was definitely not enough to counter the desert sun and wind, the dried fruits and nuts we were snacking on, or the diuretic effect of the coffee.  I had another pint of water in the car on the way home, but this was too little too late and I could feel the burning feeling that I get in my bones, eyes, mouth, nose and ears that comes of not enough water.

Yesterday was similar in the hydration department.  I tend to forget to drink enough early in the day, not noticing until I start to feel those icky signs of dehydration.  Then I have to drink a lot all at once to try to catch up and douse the rising pain.  This kept me up for an extra hour last night so that I could get in that last quart of water.  Which of course led to three trips to the bathroom in the first 90 minutes of sleep.  Again, not the best I could have done, but it was a productive day with very little pain.

Today I woke up completely free of pain after a fairly heavy night of sleep (after the initial interuptions) and feeling well enough to get ready for a trip to town straight out of bed.   I had the energy to oil my skin, braid my hair and dig through the summer clothes for a new T-shirt to wear.

I had dried fruit, nuts and tea for breakfast and followed it up with a quart of water dosed with a chlorophyll supplement called Chloroxygen, 25 drops of St. John's Wort, and 60 drops of Echinacea.  I also took two capsules of probiotics, and a teaspoon of fermented cod liver oil.

I had a couple of slips with food this week that resulted in feeling icky.  Even though the package says "no ADDED MSG", the organic Beef broth available here definitely has MSG derivatives in it.  I rarely have access to organic beef stew bones, so when I need beef broth we wind up buying it.  I always regret it though.  It's not worth it and I will begin substituting veggie broth or chicken broth instead.  I always keep my vegetable scraps in a a bag in the freezer for making a no cost veggie broth and we have a beautifully rich chicken stock everytime we cook with chicken since we always buy it either whole or as bone-in pieces.

For more info on how I keep us (a family of 5)  in a totally organic, whole food diet for $400-$700 per month (depending on what I have to work with) you can check out this post. Or this one.  I'm planning to write a lot more about eating healthy on a serious budget, menu planning, dealing with food limitations, and the like.  Whenever I do, I'll copy a link to the posts here.

Another slip I had this week was Alden's Organic Ice Cream.  It has soy lecithin in it, which bothers me at this lowered level of health.  At healthier times when I've been living within the rules for months Alden's Organic Ice Cream is an acceptable treat, but I have to limit to once or twice in a week and not repeat the treat too often in a month.

It seems complicated, but it's rather like learning the same rules you learned as a child:  We don't run into the road without looking, we don't eat too much Halloween candy, ice cream for breakfast is not okay, onions and peanut butter don't go together, etc.  Once you get it, you get it and it's a choice whether you adhere or not.

To our health!

xoxo

Aimee

 

 

A Quick Summary

[caption id="attachment_11" align="aligncenter" width="490" caption="Aimee by Whitney Martin"][/caption]

Or not so quick as the case may be...

This is a copy of an email that I recently sent out in response to one of the many emails I get about what I do/have done to reverse the Fibromyalgia:
I so know the broken feeling.  I declared myself cured in the summer of 2008 and since then have been pushing the boundaries trying to figure out exactly what I can and cannot do... exactly what equals a life of physical freedom, what I can get away with a little bit, and what adds up to leave me feeling broken and scared.

I've recently landed myself at broken and scared and am now going back to what I must finally admit is ultimately necessary... difficult, but worth more than getting away with anything.  I expect (based on three years of trial and error) that it will take me 4-6 weeks to be completely free of pain and fatigue again.  If I had not abused the rules so much it would be less.  If I don't get really serious about following "the rules" I will continue to suffer to some degree until I do.  It takes about 5 months of sticking completely by the rules before I can have a slip up without suffering immediately.  When I live inside of these restrictions I live a life free of pain, fatigue, depression, stiffness and "brain fog".  It seems like a no-brainer, but as a mother, a woman of the age and culture, and a lover of food and overdoing it.  I seem to require a painful reminder that it may be a choice, but that my choices can lead to a world of hurt.

Before I go any further, legally, I have to tell you that I'm not a doctor, I have no legal right, certification or degree that allows me to give you medical advice.  ;-)

I know this:

I cannot tolerate gluten.  Even small amounts seem to get stored and build up until I feel like a painful toxic dump.  I start getting tired.  Then I start feeling a little stiff... followed by mini "flare ups" of pain, general achy-ness and eventually devastating, deep, widespread pain, exhaustion, inability to concentrate, etc. etc.

Other things that go the exact same way are corn, "natural flavors", any derivatives of MSG
"binders", preservatives, additives, dyes, sweeteners or anti-caking agents.

I have a low tolerance for potatoes, gluten-free flour products, and any salt that isn't pure, air dried sea salt - such as Real Salt or Celtic Salt.

One of the things that brings me to my knees quickest is drinking much less than a gallon of water every day.  If I lived in a relatively cool, humid area this would likely be more like 3/4 gallon minimum.

Things that make my life easier and decrease my sensitivity are: quality probiotics like Code Raw Probiotics, Fermented Cod Liver Oil and high-fat organic butter, organic, whole milk yogurt (plain with honey or maple syrup), regular epsom salt baths with exfoliation, followed by oiling my skin (the skin is the largest organ of detoxification for the body), and whenever possible a cup of homemade bone broth.

Sleep is paramount.  I absolutely hate it.  I'm terrible at sticking to it, but I have to go to sleep at the same time every day, get up in the morning and take a nap if it feels necessary.  I know that as a mother you know that this seems impossible.  When I struggle with it the most I have to take steps to help myself.  I got rid of my TV years ago.  I turn the internet off at 8pm and I take a dose of Skullcap (4-8 drops) and Motherwort (10-15 drops) to help me fall asleep (and stay in a good quality sleep) while a guided relaxation plays on the computer next to my bed.  Sometimes the pain can make sleep so difficult.  When it does I add in a super hot bath, 5 extra drops of Skullcap and I replay the relaxation until I either fall asleep or I can listen to the whole thing.  By the time I have achieved either one of them the pain has lessened and I have a chance of waking up without pain.

I drink Nettle and Red Raspberry leaf tea every day, all day.  This helps with the energy and pain.

Herbal tinctures that I depend upon are as follows:

Skullcap (3-5 drops) as often as every 4 hours during the day.  Up to 10 drops when I'm ready to sleep.
St. Johns Wort (25-30 drops) every 4 hours, 4-5 times per day, every day.  No matter what.
If the pain is really bad during the day I will add a dropper full of California Poppy tincture to the 3 drops of Skullcap (and usual dose of St. Johns)  Until I got used to it the combination of California Poppy and Skullcap made e very drowsy.  If it's at all possible I lay down until I at least feel a little better.

16 years of doctors and prescriptions proved to me that any prescription has the potential to lift some symptoms temporarily, but that they will usually return in a couple of weeks and they will be worse than before the prescription.  Sleeping drugs where particularly detrimental to my well being, and created a truly devastating cycle of pain and exhaustion after a few weeks.  Prescriptions for depression or anxiety wrecked everything, created new symptoms, and always, always led to additional prescriptions.

I make many sacrifices to eat a completely organic, whole food ingredient diet.  It took me years to learn how to manage it with children, fatigue and serious budget constraints, but it is possible and it feels like a key ingredient.  I recently managed to feed said diet to a family of 5 for less than $400 per month, out of uncomfortable necessity.

If I could not eat a totally organic diet I would check out the EWG's Dirty Dozen list, eliminate any food that comes in a package with an ingredient list, and add in a whole foods based multi-vitamin such as Raw Code, Rainbow Light or New Chapter.

I have found acupuncture (at least once per week for 8 weeks) to be a huge help in getting over the initial hump of pain and fatigue.  There are many places that will work on a sliding scale or that offer "group sessions" at a steep discount.  Some people find relief in massage, but I have found it to be a mine-field of RMTs unqualified to deal with Fibromyalgia.   Cleanses and detoxes always help.

While I would have felt relieved to have received an email outlining all the changes I needed to make I'm sure an email such as this would have left my head spinning and me feeling a bit hopeless and utterly overwhelmed.

I hope that you might accept my deepest wishes that you find the peace and health that every mother needs to care for the most important thing(s) in her world.  If you need anything...  If you have any questions... someone to complain to... a shoulder to cry on... or are needing a gentle reminder... you can always reach me at this address.

I am opening up my online journal of recovery, Healing Rebel.

Sometimes it's hard to find the energy to put all these ideas together and think about the pain they're based on if there isn't someone holding you accountable.  I'm always grateful for the women who email me.  They give me the push or reminder that I need.

Books that have helped me to understand what I'm dealing with:  Gut & Psychology Syndrome, Nourishing Traditions, Cleanse and Purify Thyself, and readings of Dr. Christopher's Cure for the Incurables.   If you are of Christian faith, the last two will likely resonate with you on that level.  The first two are more scientific and helpful for learning how to live a new way.  Susun Weed, though totally eccentric, has the best grasp on herbs as nourishing tonics; especially for women.  Eckhart Tolle's discussion of what he calls "the pain body" in The Power of Now has been immensely helpful to me when all else falls short of the pain.

All the best,

Aimee

You Can't Keep a Good REBEL Down

I have fallen off the health bandwagon.  The Fibromyalgia is in full bloom again, but it stinks like the blooming of one of those disgusting Corpse Flowers.  I say I fell of the wagon, but truthfully I leaned too damn far off the side trying to pull the temptations onto the wagon with me.

And so, from the hell of Fibro-land... from the pits of near excruciating fatigue, from the depths of ever threatening, often unendurable pain, the confusion of brain-fog and the anxiety and depression that it all brings... I finally give you Healing Rebel.

I'd love for you to join me, but feel free to simply watch as I claw, slide, scrape, curse, cry, drag myself out of this hole (that I knew better than to toy with).

I'm going to kick the painkillers and reclaim the life of strength, comfort, peace, happiness and energy that I learned how to grab years ago.

I'm 31.  17.5 years were stolen by the FibroBeast.  Today is the beginning of the end.

Treat, Manage and Supress are no longer part of my vocabulary.

I am a Rebel.

I am a Healer.

As of today; no. more. wheat.

No more gluten.

No more "natural flavors", carageenan, binders, emulsifiers, derivatives.

No more bullshit.  No more excuses.

It's me or them.  Sink or swim. Suck it up.  Buck up.

I'll write honestly about my failures, my feelings, struggles and successes.

Bring it, Baby.  You can't keep a good Rebel down.