Category Archives: Fibromyalgia

The Great Do-Over Pt. 2 – Sleep, Rosehips, Nettles, Lemon Balm and Digestion

Standard

I have begun the process of re-prioritizing my health and the choices that I make which impact it.  The latter is a long list, sigh.  It’s a funny thing how the mind can convince you that just because you know better means you are doing right.  It doesn’t.   I know how to ensure quality restorative sleep.  I do  the opposite.  I know how to feed and fortify my body against disease and illness.  I choose to eat as much taxing junk as I can get away with.  I know how to release and protect against the serious damage of daily and circumstantial stress.   I act like every other over stressed, adrenally fatigued person I know.   I know how to use herbs to rebuild my body, but I fail to do much but forget them in my cabinet because herbs heal by shear proximity, right?
Step one has been to take a good look at all these moment by moment, day by day choices and see what reality I’ve created over the past couple of years, the proof being in the pain pudding.

Over the past couple of weeks I have been consistently replacing breakfast and lunch with a large mug of broth.  This is one that I thought would be difficult, especially with the whole family at home eating actual meals, but it hasn’t been difficult at all.  As I’m beginning this I am dealing with

  • one or two days of pain per month,
  • at least two weeks of heavy fatigue each month,
  • difficulty in falling asleep, difficulty in staying asleep,
  • difficulty digesting food (stomach bloating, churning)
  • several times per month I get a terrible electrical feeling in my body that is tied to intestinal irritation
  • sensitivity to gluten, guar and xantham gum, carageenan, corn derivatives, beans, tomato sauce/paste, potato and potato derivatives

These are all things that allow me to live my life, but limit it surely.  My goal is to regain complete health and freedom from all Fibro/CFS symptoms as I did for 2008/09.

To prepare I placed a bulk order with Mountain Rose Herbs.  I will outline each of the herbs as I add them to my routine.

To help with sleep I have begun using approximately 30 drops of Skullcap tincture along with 5 drops of Motherwort tincture, and 5 drops of Five Flower Formula.  I take it twenty minutes before going to bed.  Whenever possible I take a 30 minute long bath that is as hot as I can tolerate (meaning I have to ease myself into it very slowly and likely don’t lay down for several minutes – about 112 degrees) just before going to bed.  If I’ve done it right when I get out of the bath I will have the “I need to lay down and don’t care if I’m dry” feeling and will fall directly to sleep.  If I’m having a night where I feel certain that I won’t fall asleep readily I add a soothing essential oil to the bath like Lavender or Clary Sage (clary sage being my preference), and drink a night time tea that includes things like chamomile, passionflower, etc.  On such nights I play an effective guided relaxation/hypnosis/meditation by Jan Bennet Collier while I fall asleep.

Sleep is a top priority.  Nothing else that I can do will bring the heft of results that restorative sleep will bring.  This week’s goal is to regain control of my bedtime and what I do with myself in the hour leading up to it.  I long ago abandoned my nighttime routine and schedule to disastrous results.  This week I’m aiming for a consistent 10:30pm bedtime, with no stimulating media for an hour before bed.  This means that I will be staying off of the computer (or TV if I had one) and be skipping any books that are emotionally charged or cognitively stimulating, in favor of soothing, calming works like Shambhala Sun Magazine, Eckhart Tolle, Pema Chodron, etc.  These are things that bring me a sense of peace, quiet and certainty at the end of a day.  In fact I need to get back to reading them until I regain that place of keeping peace, quiet and certainty with me throughout the day.  If you read through the Cage Free Family archives you can see those things slip from my writing over time.  I regain them here and there, but I eventually lose them and lose my thread of writing altogether.

Of the herbs that I ordered I have introduced three of them into my every day, Lemon Balm, Rosehips, and Stinging Nettles.  I drink the Lemon Balm and Rosehips together as my morning tea, which I have with my cup of broth when I first wake up.  Together they make a really yummy citrusy tea with added honey.  I brew them, covered, for 15 minutes each morning.

The Lemon Balm is a member of the mint family and is powerfully soothing to the nervous system treating everything from anxiety and depression to very tough viruses like Herpes and Mono.  It eases the heart and the mind (much like Motherwort) and is a wonderful tonic not just for those with chronic illness or sleeplessness, but for anyone dealing with daily stress.  It has long been absent from my routine, and I am better for having it back.

Rosehips, which are actually the fruit of the rose bush, boast one of the most concentrated sources of Vitamin C available from plant or animal. In addition, they contain assimilable and high levels of iron.  Not by accident, the key to digesting and using iron is the presence of Vitamin C.  They strengthen the tissues of the body, support the vascular system, are cooling to the body and tonic for the mind, they treat chronic diahreah as well as stomach weakness.  Native American’s used Rosehips to treat muscle cramps, and they contain many vitamins and other beneficial supplements, including lycopene, essential fatty acids, beta-carotene, bioflavonoids, pectin, sugar, resin, wax, malates, citrates and other salts, tannin, malic and citrus acids, magnesium, calcium, iron, manganese, phosphorus, potassium, selenium, sulfur, zin c and vitamins A, B-1, B-2, B-3, B-5, C, D, E and K.

For the all-amazing Nettles I make an infusion every night before bed and drink it all day.  Aside from it’s truly incredible list of balanced vitamins, minerals and protein (yes, protein!!) it is long renowned for it’s benefits for the kidneys (one of our toxin elimination pathways) and the adrenal system (what sick person isn’t dealing with adrenal stress, heck, what modern person isn’t?)   Herbalist Susun Weed says “A quart of nettle infusion contains more than 1000 milligrams of calcium, 15000 IU of vitamin A, 760 milligrams of vitamin K, 10% protein, and lavish amounts of most B vitamins.  There is no denser nutrition found in any plant, not even bluegreen algae; and nettle is much more reasonably priced than any supplement, especially if you buy more than an ounce or two at a time.”  It is amazing for increasing energy and general wellbeing.  For more info click here.

In addition to the herbs I am dealing with my poor digestion with the introduction of Betaine HCI and a pancreatic enzyme that contains amylase, protease, and lipase.  I have found that taking these with a meal eliminates the painful bloating and the hours of churning.  Both are available at any herb or natural food store as well as many sources online like Amazon.

Taking the Plunge – The Great GAPS Do-Over

Standard

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.

 

But, WHY Am I Sick?

Standard

One of the questions that I carried around for nearly two decades was “Why am I sick”.  The medical community had nothing helpful to tell me… could be hereditary… that was the most helpful answer I got to the ‘why’.  Why then is it so much more prevalent now than it was a generation ago?  Why is it SO much more common now than it was a mere 20 years ago when I was first diagnosed?  20 years ago you had to find a specialist who actually knew what Fibromyalgia was.  Now you can stop five people on the street and at least one of them could likely tell you what it is and who they know that has it.

Why?  Well, I’m no doctor (thank god) but in my experience, and that of every other Fibro Survivor I have met, it is a case of toxic overload of the body.  Our chemical and food environments are wholly different than those of our grandparents.  In a single generation we have dramatically altered the world that we live in.  There are more than 7,000,000,000 recognized chemicals in existence, and more than 80,000 of them are in common use, though the EPA and FDA have no idea how many chemicals are in use in consumer products, what products they are in, nor what these chemicals actually do.  Thousands of new chemicals are approved for use in consumer products each year and the EPA and FDA can only request a small amount of information about these chemicals because the actual content and actions of the chemicals are protected.  80% of these new chemicals are approved within 3 weeks with no information about what they are, how they will be used, or what they might do to life on the planet or inside your body.

We rub our bodies with known carcinogens.  We clean our homes with hormonal disrupting chemicals created in a lab.  The most affordable foods available are also created in labs and factories, and then when we turn up sick, exhausted, depressed, afraid, we are treated with chemical pills created right along side our cleaners and pesticides.  To prevent illness we saturate our entire environment in antibiotics and antimicrobials.  The fundamental problem here:  We ourselves, our comprised of bacterias.  Without them our bodies cease to function, cease to be able to digest and use the food we eat, cease to be able to defend against and then get rid the toxins that we take in.

Let’s break for a moment a learn a couple of interesting and important things about our bodies:

EPIGENETICS – what are they and what does it have to do with Fibromyalgia and other environmental illness?  Here’s where we return to that oh so helpful thing we get told about Fibro, “It appears to be genetic”. Epigenetics affect how a gene (your DNA) is expressed, or “turned on or off”.  Many, many factors can affect your epigenetic tags from the food we eat to the chemicals we are exposed to.  Some epigenetic tags can be passed down from your mother or father.

Why is learning more about epigenetics important? Everything you’ve been taught about genetics is wrong! Well, it’s not completely wrong, but if you weren’t taught about epigenetics, you weren’t told the whole truth. The genes were born with do change. Our DNA is not set in stone.”  The good news is that also means that you can CHANGE yours.  In the pursuit of simplicity, let’s turn to this quick Nova video explaining Epigenetics.

“As the chemical tags that control our genes change, cells can become abnormal, triggering diseases.”

“One of the main findings of research is that epigenomes can change in fusion with what we eat, what we drink, what we smoke, and this is one of the key differences between epigentics and genetics.”

I have all the reason in the world, my health, to believe that a person can, on their own, repair their epigenetics in the same way that they sustained the damage: what we put into, onto and around our bodies in the form of food, drink, vitamins, minerals, and chemicals.

How the guts work:

All disease begins in the gut” -Hippocrates

“And the more we learn ,with all our scientific muscle, is just how right he was, just how correct he was.  When we talk about the digestive system, we have to talk about what lives there and what takes care of it.  We have to talk about the housekeepers of our second brain and our major immune system organ, and the organ which feeds us and protects us and detoxifies us.  We have to talk about gut flora.  The scientists recently, in Scandinavia, have established the fact that about 90% of all cells and all genetic material in your body is your gut flora. So we are just about 10% of our bodies, we only are a shell that holds this microscopic world inside us and we ignore that world at our peril.  It’s role of our physiology, and our psychology, and functioning of that 10% of us, is so fundamental that because we have ignored it for such a long time our health status is in a bad way at the moment.” -Dr. Natasha Campbell-McBride

Here is Dr. Campbell-McBride on why a healing diet is fundamentally necessary to the reversal of diseases such as Fibromyalgia and Chronic Fatigue Syndrome.

What we eat, what we put into our bodies, and on them… the chemicals we choose to clean our homes, our laundry, our hands and our hair, to scent our air… the chemicals that are applied to our foods without our knowledge or labeling laws to protect us… these things are the things which are making us sick. These things are the things which we can choose to eradicate from our lives.  Knowledge is power my lovelies, and as you begin to fill your brain with all the truths of the matter of why we are sick you will find that therein lies the power that you need to manage everything that you must do to reclaim your life, your health.

So, here’s to our health!

Or as my father says, “Eat as if your life depends on it!” because, after all, you are what you eat 😉

Health, Meal Planning, and Shopping Traps to Avoid

Standard

Over on Cage Free Family I have begun a series of posts about food, food costs, and managing increased cost inherent in eating a healing diet.

The series began with my post Put Your Money Where Your Mouth Is, where I discuss how meal planning (or a lack there of) can affect not only your budget, but your health and waistline.  I also touch on topics of food additives and Fibromyalgia.

Second in the series is Meal Planning Steps 1 & 2, where I go into detail about the process of meal planning, how to make it easier, and how to make it more effective.

Third in the series is Step 3, Making the List, Where I give a step by step instruction on turning your meal plan into a grocery list.  There is also help with learning more about where you lose money in the grocery store, how to avoid this, substitutions, and escaping the common shopping mistakes.

I do hope you find this helpful, especially as I move into deeper discussion on the connection between health and the food we eat (or don’t eat!).

Each of these posts takes hours to compile, so bear with me as I sort through available resources to choose those that are most relevant and most helpful.

In the Beginning There Was A Little Rebel…

Standard

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!

 

Inflammation, Leaky Gut Syndrome, and the Food We Eat

Standard

The Toxic Truth About the Gluten Free Diet http://scdlifestyle.com/2012/04/the-toxic-truth-about-gluten-free-food-and-celiac-disease/#more-3490

I’ve just come across this and thought I’d better share.  The fact is that it has been more than 4 years since I read Gut & Psychology Syndrome which helped me to understand why I was sick.  It has been more than four years of forgetting, and I have never since felt as completely healthy and strong since.  I have been wondering why, when I no longer have most of the FMS symptoms I still get occassional feelings of flare ups, and just a general feeling of fragility despite my lack of symptoms.

I’ll admit, I eat a lot of brown rice.  Most of it is sprouted to eliminate the problems that this article talks about, but some of it (that contained in the brown rice crackers and the brown rice pasta) is not sprouted.

Alas, I think it is time for me to read the GAPS book again so that my choices can be made from an informed place again.  For those who have not yet looked into the GAPS program, I highly recommend it.  It was utterly integral to my healing process.  For those who have, but are overwhelmed try reading a bit about the SCD (Specific Carbohydrate Diet).  There is a lot more information and support for this one, but they are essentially the same, with only a few minor differences.

I picked up the GAPS Guide companion book a few years ago, and would like to recommend that one too.  It goes a long way in the hand-holding department.  For those utterly new to healthy eating, you might also like the Internal Bliss Cookbook.   I got mine here:  http://www.shop.gapsdiet.com/category.sc;jsessionid=9C6FB7D261DFF619D218B7A5483565ED.qscstrfrnt06?categoryId=7

I don’t get any kickbacks or anything like that.  It’s just where I picked up my copies.

That being said, my real introduction to healing diets was from the Nourishing Traditions Cookbook and the Wild Fermentation book.  Nourishing Traditions will teach you how to eat some of these dangerous foods in a way that renders them not just safe, but nutritious as well.

Management of Pain While Healing

Standard

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

Standard

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

Standard

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.