Category Archives: About Aimee

Taking the Plunge – The Great GAPS Do-Over

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More than four years ago, with the help of the Gut And Psychology Syndrome diet I carried myself over the distance from merely keeping my Fibromyalgia symptoms in check to living wholly without symptoms and able to do anything that I liked.  It was a leap that I took like all the others before it from dropping the prescriptions to returning to my acupuncture appointment after my first experience was powerfully new and frightening… it was based on inspiration, an absolute need to be healthy, and shear guts, and it worked.  Better than I even hoped it would.

But, healthy is a tricky thing, or rather, the mind is a tricky thing when it comes to health.  When we are feeling healthy we are often feeling indestructible and brave. We are feeling certain of our enduring health. Like a teenager who believes in their own immortality we take risks, we test limits, we fall for lies, and we slip into the crowd.  I did just this.  After less than 6 months of pure health and freedom we took off for an epic trip around the country that would last more than a year.  The trouble began just four weeks later when we arrived in Taos, NM.  Lured in by the promise of “the most amazing pizza” we leaped off the wagon and never looked back.  From that point on we loaded our RV with healthy organic food, and ate out at every pizza joint we crossed (or could seek out) in 27 states.  There was a time in the summer of 2009 that I could eat pizza two times in a day and 7 times in a week.  Pizza.  From any kind of restaurant, from the hole in the wall sliceries to the fanciest pizzerias.  Made with god knows what kind of ingredients, and stuffed with gluten, hormones and preservatives.  Feeling strong I didn’t actually worry about it.  Then when there were no repercussions I we emboldened and moved out with wild abandon into my reckless crash back into the S.A.D. (Standard American Diet).

It was two months before I was willing to recognize that I was not feeling perfect anymore, but my psyche was all too willing to rationalize it away.  I was healthy after all… look at all the things I could do!

Four months after falling off the wagon ( a full 18 months before I should have even attempted to start adding foods back into my diet) I was having pain again and no longer woke easily in the morning.  I was heading in the wrong direction and clinging to the lies my mind gave me to make it okay.  I was living freely for the first time in memory.  I was traveling the country and wanted to experience everything with no limits, and so I did.  Here’s the kicker, the GAPS diet that I gave so little time to had given me so much healing in that short time that I was able to get away with this for more than a year, until my body succumbed to the major taxation of pregnancy and could no longer handle both things.  By the summer of 2010 I was again experiencing the full range of Fibromyalgia symptoms, with a new baby, a temporarily crippled husband and a house torn down for mold remediation and renovations, we turned again to a dependency on restaurants and easy foods.  I actually cringed when I watched myself feeding my children boxed organic cereals for breakfast, and there I met the end of my reign of health and perception of it.

I cleaned up my act.  We cut out all the major offenses from packaged and restaurant foods, to flours.  It was a definite improvement.  I felt my health return fairly quickly and regained a sense of control. But, since then I have had this lingering feeling of fatigue, sensitivity, and general poor constitution.  It follows me around at all times making me question what I am capable of… what I can get away with.  I have felt strained, anxious, weak, uncertain and afraid of the occasional flare ups.  It sucks.  It has sucked for more than two years now… that fear, uncertainty and doubt.  The hard but unlabeled limits to my health.

And so, after years of hemming and hawing about it I am going to take the plunge and begin all over again with my eye on utter and complete health… fearless freedom in my physical existence.  I have tried all things on the scale from deep disease to absolute health and every compromise in between.  I think I needed to know the limits.  I think I needed to know the truth about my choices.  I know now.  No amount of food freedom is worth living with the threatening shadow of disease.

I am going to do my best to document the whole process here.  I’ll include the good, the bad, and the (inevitably) very ugly.

Let’s go ahead and begin with where I am: The Preparing/Planning Phase.

On the intro diet of GAPS I will be limited to bone broth and boiled meats and vegetables.  Last time we had the whole family on the diet.  This time, for now, I will be going it alone.  Each week, as always, I will make a breakfast/lunch/dinner/snack menu for the family, but I will plan a different menu of broths and soups for myself.

Since I know that I have digestive issues I will be taking both a Pepsin-HCI supplement as well as a pancreatic enzyme supplement.  I have been taking Bio-Kult brand Probiotics, so I will continue with that with the goal of adding in fermented veggie juice to my broth and ultimately fermented vegetables like homemade pickles, kimchi and sauerkraut.

In addition to the probiotics, and enzymes I have tinctures of Skullcap (a nervine), St. John’s Wort (an anti-inflammatory) and California Poppy (for pain).

Over the next couple of weeks I will build up a supply of meaty bones (for soups/stocks).  Right now we make (and use) around 17 quarts (4.5 gallons) of bone stock every 7-9 days.  When I am eating in for all three meals a day and snacks I will likely need more as I will be consuming around three quarts per day.  To manage this we buy our organic bones in bulk from a local rancher and have a 9 gallon lidded stock pot to brew the 4.5 gallons of stock in.
I will also be ordering (discounted) bulk amounts of celery, onions, and garlic from the farmers at the local farmers markets.  Luckily I have a ton of carrots, beets, tomatoes and squash growing our our gardens to add to the soups and won’t need to purchase these for a few months.

I have also purchased 5 lb bags of Celtic Sea Salt and Organic Peppercorns.  I will be using these along with dried herbs to flavor broth and soups.  This week my order of 2 gallons of organic unrefined coconut oil arrived with my 5lb bags of Nettles, Raspberry Leaf, Oatstraw, Horsetail, Comfrey, Elderberries, Rosehips and others that I will outline in another post that includes their useful properties and their preparation.  Many of these provide essential vitamins and minerals in addition to their ability to ease certain symptoms.

What I am presently lacking is a supply of detox bath ingredients.  I did not do detox bathing last time, but I would really like to do it this time to ease the process.  Baths have long been my safe space, if I am feeling ill, overwhelmed, nervous, tired, angry, sad, anything, you will likely find me in the bath.  It eases all ills.  This time I will be adding things like sea salts, baking soda, and clay to the water to draw out the toxins that will be looking for a way out once I begin the healing process and cutting out the foods that supply these toxins into my body.

Right now I’m feeling a little more powerful and certain a shift that always comes when I shift from worry to action, but I am also nervous about managing the cost, dealing with the cleansing symptoms, sticking to my prescribed diet while my family eats my favorite foods, and remembering to take my supplements consistently.  I can not afford enough Fermented Cod Liver Oil to keep a consistent supply of it, so I will take it when I can and forget about it when I can’t.

For right now I will be going without the acupuncture support that I had last time, as well as the medicinal marijuana to manage the die-off and cleansing pain and panic attacks.  This cleansing and healing of the gut can have pronounced effects on the way that the world feels, looks, seems, so it can create some very intense emotions.  For this I will be turning to herbal teas, a safe space to work through intense moments and support from my husband when I need the reassurance that I will need, for even having experiential knowledge of how this works and what it feels like and how it will turn out in the end, in those intense moments it can all go out the window in a quick panic.  I want to be prepared for that.

One last thing.  I have obtained a prescription for eight  5/325 Hydrocodone from a local clinic.  These are my last stronghold against the fear that can cause me to fail to begin or to quit when the going gets tough.  The goal is to not take them at all since they will extend the cleansing, healing process, but I have them for peace of mind.  Whenever I feel that fear, that worsening (before bettering) of symptoms I will have my silent promise to myself:  You can handle this, and if you can’t you won’t suffer it.  This is a choice, not a sentence.  This is a choice, not a sentence.  Make the right one.

 

In the Beginning There Was A Little Rebel…

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There are times when the memory of the pain, the exhaustion, the all consuming list of symptoms, haunts me.  It starts like a whisper in my ear, and then feels a bit like falling down a long hole.  I don’t really like to remember.  This site is something that I dreamed of making since 2008 when the feeling of being a Rebel first hit.  It’s so much easier to remember only back to that point.  To the point when I knew that I was getting better.  To the point when I knew that I was going to be okay, somehow.

So, there are years, and years, and years of pain and illness memories, that I keep stacked up, tucked away… with a nice heavy cloth to hide them in the corner of my garage.  They feel like people from the past that turn up, uninvited and want to drag you back to a place you don’t want to go.  It’s been a process of uncovering to get back to them.  To remember the fear and the anger, the hopelessness and the powerlessness.  It’s been a process that had to start with establishing a willingness to go back to them.

The memories seem to bubble up at the funniest of times… when I was almost done with a day of heavy digging in rocky, compacted soil.  It was the kind of huge job that I still can’t believe that I can do.  Standing in darkening, newly dug beds, feeling hot despite the cold dusk air, and flinging my sweater over to the nearby patio.  I wiped my forehead and realized that I had done all this.  In one day.  All by myself.  My first thought was, “oh, no. you’re going to regret this tomorrow, and the next day, and the days after that!”  It was a scary feeling full of regret that came just before a flood of memories that left haunting ghosts of pain and fatigue flood my body.  A different reality.  The old reality.  The one where my life consisted of moving from sitting in one place to sitting in another.  Of never doing too much, of never knowing when the pain was going to flare.

But it wasn’t my reality.  In my new reality I get to spend 6 hours digging, weeding, scraping, planting.  In my new reality there is no punishment for such freedoms.  In my new reality I wake up the next morning, roll over to see how high the sun is and think about what I most want to do today.  In my new reality I get to take yoga classes and keep up with the teacher, straining deeper and deeper into poses, holding out and refusing to let my muscles tell me that it’s enough before the teacher does.  In my new reality I get to take friends on a hike up the mountain so that they can see the vast beauty of where I get to live, even when the snow blocks the more reasonable path and our hike qualifies more as rock climbing for an hour.  I like my new reality so much more and would like to leave the old one buried somewhere.  But I also want to unearth it for you.

I want to dust it off, say things like, “Oh, I forgot all about that!” and show you that it’s possible.  That I’m certain that Fibromyalgia isn’t a life sentence.

I want to pull out all the old memories where I’m fumbling forward, blindly, reaching for a health that may never be there for me.  I want to share with you all the moments when I was sure that I was getting worse instead of better, where I wanted to give up, where I just wanted to take a fat pill to make it go away for a little while so that I could think about something other than getting better.  To crack open those days when I crumbled, and cried, cursed and gave up.  I had no road map, no guide, to promise to go on.  Just a gut feeling that I would not give up my life to this thing.  That I would fight for it.  That if necessary I would chase, and rip and pull my life back to me.  It was, ultimately that Rebel spirit that carried me through everything that I would have to do.

I’ve had the great pleasure of talking to some of you over the years.  Sharing phone conversations, fears, miseries.  It makes me immensely happy to know that I am not there anymore, but that I am here for those who need a hand or a shoulder.  It opens up that compression that lived on my chest for most of my life and spills out knowing that I would befriend every one of you, hold your hands, help you to bed, tell you that it’s going to be okay… just keep going.

I have dreams that Fibromyalgia is a blip on the map of our past.  That we learn not just how to heal from it, but how to prevent it for our children and theirs.  I dream that this swell of diagnosis is near the breaking point and that I will not be a rare case for long.

I’m trying to start a rebellion.  wink wink nudge nudge

To our health!

 

Management of Pain While Healing

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Manage. This is what I did for myself in the beginning. I managed.  Once I realized that this is what I was doing, a whole world of options opened up to me.  As I researched managing pain I found a wealth of information from hospice workers.  The most helpful came from reading Buddhist Teacher, Zen Priest, Medical Anthropologist, and Author Joan Halifax.  At first reading about pain was scary, but quickly it was quieting. Comforting.  I started learning about meditative management of pain.  No, it wasn’t easy.  Often I didn’t get it.  I didn’t understand words, ideas, faiths.  I didn’t want to sit, I couldn’t focus, I had no patience, and was easily bored, but I did it.  My life became about this.  I eliminated all  non essential things in my life that interfered with this new focus.  Yes, this included unsupportive family and friends.  This was a matter of life and death.  Death being the life swallowing symptoms I was working against.

I knew nothing of Buddhism.  I knew little about what meditation really was.  I just moved forward.  I focused.  I bought a Buddhist magazine called Shambhala Sun, I read, and read, and read.  As I did this I started to learn that I could quiet my body’s reaction to pain, to stress, to fear and especially to outside factors like loud children, traffic noise, phone calls.  I started to become aware of myself and my body in a way that had seemed dangerous all of those years before.  I had spent half a life time learning to ignore what I was feeling so that I could survive.  Now I was focusing on it.  Everything started to slow down. Slooooow down.  Feelings and pain and stress and fear stopped flying at me and floated around instead.  I started feeling separate of these things.  A big shift from feeling like I was made of them.

The pain still rose up, but it wasn’t having the same effect on me.  It wasn’t so sharp, so unbearable.  I started to understand this ‘Brain-fog’ thing because I could see it more clearly.  I wasn’t fogged.  I wasn’t confused.  I didn’t have memory troubles.  I was tired.  My brain was tired.  Sometimes more than others.  From this tired brain place it was easy to go on auto pilot and react to the world as it happened to me.  As I slowed down and became more aware of all that was happening in my body I was able to slow down the world around me too.  When previously I could not find time for sleep, or accomplish it, I was now able to open up space for this in my life.  Even when I meant bringing the kids into the bedroom with me, setting the up with something and napping between them.  Bit by bit the life inside our home changed to accomodate what I needed.  I did not make a list and demand that it adopted by my family so that they could tell me why this could not happen.  I moved life myself.  I changed and it affected change.

Remaining calm and peaceful became a high priority.  When my family realized how much more functional and healthy I could be in a calm environment they started to prioritize this too.  It wasn’t over night.  We didn’t know what was happening as it was happening.  It just shifted, imperceptibly, as I shifted.  As we realized that I was getting better, even in the presence of devestating regressions, it became easier to allow me the things that I needed to get better.  When we began to believe (together) that I would get well, it became simple to make sure that we were protecting that progress by letting other priorities go for a while.  Life shifted.  It became about healing.  Living was put aside.  Chores, expectations, commitments, these things were placed below all things that led to healing.

It was like starting to finally see a hint of that light that was supposed to be at the end of the lightless tunnel I had started traveling.  It was the breath of life, the ray of sun, that was rewarded after all the promiseless trials.  And there were many, many promiseless trials.  There were more coming too.  It didn’t really matter though.  This healing thing had taken a life of it’s own and I was being carried through it, pushed through it, pulled through it and sometimes crawling through it of sheer will.

I had no idea how long this tunnel was.  I had no idea how far I may or may not have come.  There came a point when it didn’t matter anymore.  I wasn’t focused on the light at the end.  I was learning to focus on the best here and now that could be achieved.  I was learning to experience each moment in the best way possible, pain or no, fatigue or no, strain or percieved failure or not.  Each thing was going to be experienced in the best way that it could be.

It was an astounding lack of judgment.  It took me a while to realize that shift, but when I did it opened up yet another stash of tools for the process.

I read more.  I perused the book ads and reviews in Shamala sun and found two books that would become very important to me.  Two books that would act like security blankets and start to carry me back into every day life.  They were The Four Agreements and The Power of Now.  If someone had told me that these two books would have anything to do with healing I would never have picked them up.  I wouldn’t have believed such a thing and thus would have chosen to not waste my time.  But no one told me that and they intrigued me, so I was able to pick them both up and simply read.

I read them ever, ever so slowly.  Trying to understand every single sentence.  To follow every single paradigm shift, and to take a break when I couldn’t follow anymore.

I was truly astounded to discover that these two books helped me manage the pain.  It went against everything I had ever been taught, told or previously believed, but it was very real.

I was getting better and it was time to refine my practice… discover what was truly working and give it more.  Learn more.  Heal more.

Accupuncture, Herbs, and Kooks

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When I first began I knew nothing about so called “natural health”.  I ate a mostly organic diet, I believed, but this is as far as my understanding went.  Many years earlier, with the use of a book called Reversing Fibromyalgia, I had my only experience with ‘natural health’ and it included hundreds of dollars of vitamin and mineral supplements with unpronounceable names and throat gagging pills, powders and tablets.  I failed.  Even in Dallas 1999 did not provide a useable selection of organic foods and food allergy substitutes. The idea of going down this road again, even with access to many huge, well supplied Organic Natural Food stores like Whole Foods, was unpleasant.  But down it I went, taking my family with me.  Though my father, who lived with us at the time, did not choose to join us and continued to stock the house with his usual foods, the kids and husband were along for the ride.

I started by calling around town (Austin, TX) to find an acupuncture clinic that I could afford since my insurance did not cover such things.  It was days of tears and defeat as I called office after office to find that treatements averaged $75 per visit, and that they weren’t as likely to help unless I went at least every week, if not twice every week.  It was again a friend who told me about ‘group acupuncture’.  In a seedy part of town I found a low cost clinic that provided acupuncture to multiple patients during the same appointment.  We each arrived 15 minutes apart and were placed in cushy recliners behind japanese style screens in a large, perfectly tempered, zen inspired room.  Spa like music played quietly, everyone whispered, and the earthy smell of herbs floated around the darkened space.  There was nothing familiar about this experience.  I was afraid of the needles, afraid of the herbs, afraid of having a flare up during treatments, afraid that I would suffer for the rest of my life.  It took everything I had to go into this new world, but very quickly it became my world… my new comfort.  I was not alone anymore.  I could now give all of my fears to a person who did not share them, and believed, fully, in my ability to be free of this disease, even when I could not.

The treatments were working, but the improvements were short lived.  Sometimes hours, sometimes days, but they worked none the less.  Very quickly my acupuncturist discovered that I did much better with a very simple ‘opening’ treatment.  Complicated, symptom specific treatments were too much for me.  They overwhelmed me with sensations, energy, and sometimes flare ups, so we backed off of that and stuck with what worked.  I even began learning to meditate with the use of a favored guided meditation by Jan Bennett Collier.

With a taste of what could be possible and a growing belief that I may actually find a life of complete health I started moving forward with great intention.  I began trying every single thing that was suggested to me.  Faith healing? Sure!  Body Talk?  Why not! Chinese medicine?  Okay!  And why the hell not?  I no longer cared how kooky it seemed.  In fact I couldn’t care less whether or not I could believe in it.  I did it all anyway.  I did it all with complete commitment. The things that seemed to work got more of my time/money/effort, those that didn’t moved to the back burner and fit in where they could.

I started learning about sleep, the process, the theories, even the new agey stuff.  I started trying to pinpoint the place where sleep was going wrong for me.  I was consumed with discovering the answer to the deeper question… the question beyond the label of Fibromyalgia… What is wrong with me?  Then the real question, How do I fix what is wrong with me?

All the while I had to continue to tackle the now lessened, but still present, symptoms.  I started researching western herbalists and what herbs I could take to help me with the still flaring symptoms.  Susun Weed’s philosophy spoke to me, and I picked three herbs (in tincture form) that seemed right in doses that she recommended: Skullcap 3-6 drops, St. John’s Wort 25 drops, and California Poppy 15-25 drops.  I learned things about these plants, what they did, how they worked, what elements of them were being used to create bastardized and adulterated forms in prescriptions.  St. John’s Wort turned out to be much more that a mood lifter.  It was a powerful anti-inflammatory and treated nerve pain.  The Skullcap, also a nervine, eased the fear and stress present in every day life as well as in living with this disease, but it also treated nerve pain!  California Poppy?  Powerful, good stuff.  The more I took them the more I could start to see how they effected me, when my body needed them, and how I could use them best.  There was no road map, but in taking responsibility for my body, owning my own self, I started to trust, bit by bit.  Gradually I realized that my body was communicating with me in more subtle tones than just pain and tired.  There were are myriad of smaller, more specific symptoms that had blended into a huge noise that I called Pain and Fatigue.  Smaller, more specific symptoms that I could manage.

 

The Role of Sleep and the Successful (Banned) Prescription

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Hi Everyone,

I always mean to write more, but as the years go on I wind up writing less and less.  I have a bit of a pile-up of emails and commented questions, so I want to try to answer some of those questions.  WhileI can’t tell you what to do, and ust tell you to always check with a trusted health care provide, I can tell you what I do, have done, experienced, and have learned.

I get a lot of questions about the prescription that is on a split ban in the US, so lets start there, because it is my sincere hope that you may be able to learn something helpful from my struggle.  The drug is called Xyrem as a prescription.  It is a chemical drug called GHB (Gamma Hydroxybuteric Acid/Sodium Oxybate) and is both a Schedule I and Schedule III drug here in the US, so it must be prescribed by a doctor who is certified to prescribe it (a process they must go through) and will arrive via Next Day FedEx directly to the patient’s door from the one central pharmacy with the license to make it.  Currently it’s only on-label use is “excessive daytime sleepiness” as experienced by people with Narcolepsy.  There was a trial (I believe by Orphan Medical) to make Fibromyalgia an on-label use, but as far as I know this bid was denied by the FDA.

Let’s touch on why I wanted to take this drug first.  In my years of research I found some mentions of a failure to achieve the deep restorative sleep, previously called Delta Wave or Stage IV Sleep, by Fibromyalgia sufferers.  In tests research subjects who’s delta waves were repeatedly disrupted developed widespread pain and fatigue.  One study suggested that the FMS pressure points became activated as well.  Essentially, delta wave disruption seemed to be causing FMS in previously healthy patients, but when the subjects were no longer interupted by teh researchers they returned to normal sleep patterns and the symptoms disappeared.  This was a big flag to me as a person with lifelong sleep disruption and insomnia.  I had been through may years of sleep inducing and assisting prescriptions as well.  As I began researching this idea further…  how to achieve this elusive stage IV sleep… I came across a number of works that suggested that nearly all, if not all, sleep related drugs were disruptive to the sleep patterns, blocking or interrupting the all important delta waves.  This spoke worlds of truth to my tired body that had been so long drugged with sleep assisting pills and was yet, thoroughly exhausted, never refreshed.   It was my father that called me one day to tell me that he had heard a short story on PBS radio about a drug that was being tested to treat delta wave disruption and included a quick note about Fibromyalgia.  It was years later that I finally found the right string of words in my Google searches that gave me Xyrem.

Once I knew the name I was able to take it to my doctor and begin the pleading process.  He did a bit of looking and returned to me with the news that it was roughly $500 per month and that even if he did write it on-label there was a good chance that my insurance company would not pay for it, but after a long discussion we went for it anyway.  A couple of weeks later I finally had the prescription in my hands, but alas, there were no instructions for use.  No dosing information.  Nothing.  It was going to be a stabbing in the dark process with a drug that I had been repeatedly warned could easily kill me.  Fun times, y’all.

It was brutal to put it shortly.  It was months before I found a dose that did not make me vomit, wet the bed, or live in a constant state of nausea and dizziness.  The headaches were long lasting as well.  It was frightening and miserable, but it did eventually work.  The pain slipped away under my distraction with the extreme exhaustion and ever present symptoms.  I lost 60 pounds during the first 3 months, dropping to 105 pounds, and living in a blur of sleep and half sleep.  Ultimately it was a friend of a friend of a friend, who had experience with recreational use of GHB, that suggested that Cannabis/Marijuana might aleviate the dizziness, nausea, and food aversion, enhance the sleep time, and be a safer drug combination than another prescription.  I had talked with my doctor already about an additional prescription, but with so little known in the medical community about GHB, no one wanted to combine anything with it.  I had to turn to the recreational users who had a wealth of information on dosing and combining.

To say that I was terrified would be an epic understatement, but I had a gut feeling and I followed it to success.  My doctor could not comment on what I was doing, and only reminded me that he had nothing to go on that could allow him to advise for or against my choices.  He simply asked me how I was feeling.  Very well.  Like a real person, I told him.  And I did.  Once I found the right combination, a much lower dose of GHB and a much higher dose of Medical grade Marijuana, I had a life.  I was skeletal, no muscle and no fat left, but I had a place to start and learned to jog and start to build strength.  I lived in this way for 11 months until I became pregnant with my second child.  Then the gig was up.  I couldn’t take it while pregnant or nursing, so I was quite suddenly facing years without access to what had finally allowed me to escape this miserable disease.

The video, Healing Fibromyalgia, was filmed just before and after my daughter’s first birthday, when the drug was still unavailable to me, but I could not take the return of the pain or other symptoms.  They were worse than ever before.  This is where the alternative healing treatments entered my life.  Unwilling to wean my daughter to take drugs again my doctor suggested that it was in my best interest to walk away from Western Medical and try something else.  He suggested Acupuncture.  After a few days of crying about the utter unfairness of it all, this is where I began.

The Past 5 Wks – Post Detox – LIFE RETURNS

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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

Healing Fibromyalgia

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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:

A Quick Summary

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Aimee by Whitney Martin

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

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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.