Category Archives: Prescription Drugs

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.

 

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.

Quick update and Fluoride, oh my!

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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:

Index of Fluoride containing Pharmaceuticals
http://www.slweb.org/ftrcfluorinatedpharm.html
Chronic Fluoride Poisoning Q&A
High density sources of vitamins – yes, in FOOD.
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.

Is American Medicine Working?

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“US health care spending reached $1.6 trillion in 2003, representing 14% of the nation’s gross national product.26 Considering this enormous expenditure, we should have the best medicine in the world. We should be preventing and reversing disease, and doing minimal harm. Careful and objective review, however, shows we are doing the opposite. Because of the extraordinarily narrow, technologically driven context in which contemporary medicine examines the human condition, we are completely missing the larger picture…A definitive review of medical peer-reviewed journals and government health statistics shows that American medicine frequently causes more harm than good…What you are about to read is a stunning compilation of facts that documents that those who seek to abolish consumer access to natural therapies are misleading the public. Nearly 800,000 Americans die each year at the hands of government-sanctioned medicine, while the FDA and other government agencies pretend to protect the public by harassing those who offer safe alternatives.”

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

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:

Sleep – Part 1

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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.