Tag Archives: Prescription

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.

 

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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.