Category Archives: pain

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.

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.

The Past 5 Wks – Post Detox – LIFE RETURNS

Standard

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

This time I already knew what I had to do and began it all, cold turkey, at the same time.  The repercussions were pretty severe.  The detox was awful, and not knowing how long it was going to last was difficult to manage.  But, alas, a mere two days after I thought I couldn’t handle the severity of the symptoms anymore and went looking for help, they began a hard, fast decline.  So fast that I was left feeling like it couldn’t possibly have been as awful as I thought it was, or that it was just a lull and would come back.

It hasn’t.  Four weeks ago I took a big plunge and enrolled in a beginner’s ballet class for adults.  I won’t lie.  I was scared.  I almost backed out over and over again.  I almost left during class for fear that I was going to overdo it.  When the instructor told us at the end of class that we were now going to do one full minute of situps every part of my brain went NOOOOOOO.  No!  Bad idea!  Don’t do this!  But I did.  I did it.  I never expected that I could even do it, just that I would try and either hurt myself or plain not be able to DO a situp.  I simply could not believe it when I did it.  I got tears in my eyes.  The music ended, the class clapped, the teacher beamed at us and told us how proud and excited she was to do this class and we walked out the door into the sunny parking lot.  My family was waiting in the car, expectant, wide eyed.   The class had gone 1 hour and 45 minutes.  They couldn’t believe it and as I watched them watching me walk across the parking lot I knew in that moment that even if I did suffer the next day that it was worth it.  The way that I felt in that moment; the strength, the pride the freedom… even if it was never to happen again, it was worth it.

As if that wasn’t enough for a happy ending.  If that wasn’t just almost too much to take it… the next two days came and went uneventfully.  No flare ups.  Nothing that said Fibromyalgia.  I felt what I assume every other dancer felt the next day: the muscles that I hadn’t used before.  When I told my husband I did cry.  I cried because of the relief.  I really was so scared.  I cried because I felt like an ass.  I cried because I had lived without symptoms for sooo long and then made choices.  Choices that I knew I shouldn’t make.  I made excuses.  I felt guilty for where I had put myself again and where I took my family when I went there.  I cried for all the food I ate that polluted my body, for all the times I stayed up watching a movie instead of going to bed.  I cried for all the times I should have made infusion instead of buying a cup of coffee.  I cried and got all the crap out and then let it float away because they didn’t blame me.

It’s hard.  In the world we live in, in the culture we live in: it’s hard.  Even when you know, from personal experience, what you need to do – it’s hard.  And that’s okay.

I’d like to say that I won’t do it again.  That I’ll never let myself feel another Fibromyalgia symptom again, but I know that that’s a lie.  I know that it’s been a matter of weeks since I proved to myself that I have control of whether or not I experience Fibromyalgia and I STILL had an ice cream cone in the historic center last night while sitting with friends.

That’s who I am.  There is some part of me that needs to understand exactly, exactly what I can and cannot do.  Exactly how far I can go.  Exactly how much, how long… I just need to.   I first proved to myself that I could live for years without symptoms.  Then I needed to know how much of the restrictions were certain and how certain they are.  Now I know.  I really do.

I’ve learned some new things this time around too.  Playing with specific types of foods to see my level of sensitivity to them.  Watching which symptoms are affected by what choices.  Knowledge is power.  It’s enough for me to be able to say that I will likely never eat gluten again.  I will never eat anything that contains an additive, binder, or “naturally derived” adulterated ingredient again.

I want to do more than survive the ballet class.  I want to find strength and grace that I have never known.  I want to dance in the recital next year. :-p  Yesterday I hiked for one hour straight up the side of the mountain next to our cabin.  We barely stopped as the thunder clouds rolled in.  My kids wanted to make it “all the way to the top” and so did I.  Just as we reached the summit the sky opened up and rain poured down on us.  We were on a new trail with nothing beyond a sense of which direction would be a sure trail down (rather than to an impassible gorge).  We’re adventurous and never take the same trail down that we took up.  We follow the elk paths and we have real adventures.  It was another hour down the mountain via a valley that a spring fed creek ran through.  It was like a different world in there.  The ridges rising a hundred feet over our heads and the grass and flowers grown as tall as my daughter were so different from dry desert mountain all around it.

I want that more than I want any of the things that I can’t have.  I want that more.

To our health.

xoxo

Detox blues

Standard

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

About four days ago I started to have this unpleasant tingle-hurt feeling in my lip where I found a tiny lump deep inside.  By the time I got home 5 or so hours later it was blooming into a cold sore such as I have never seen.  I have had about 5 small cold sores in the same spot over the past 10 years.  I know the drill and the look of this one was beyond my comprehension.  I knew it would be bad as it was clearly going to be some 6 times larger than anything I’d ever seen before, but I wasn’t really prepared for all of the symptoms of it to be multiplied so.  I spare you the details, but I’ll tell you that the pain literally brought me to the floor two mornings in a row.  On the afternoon of the worst day I nearly fainted from the intensity of the unceasing pain.  I’ve had three home births.  I can do a little discomfort, but this was wicked, searing, torturous pain that will likely have me quaking in my boot the next time I think I may be getting one.

Now that it’s winding down and on its way out I’ve got an absurdely large canker sore forming inside my lip near my gum line.

Oh the joys of detoxing.  The answer I suppose is to work the other lines of elimination a bit better… more detox baths, more skin brushing, more water…  Being that I’m still nursing little S, I cannot partake in any of the more rigorous detoxing methods, so this could drag out for me for a while.

I’m also planning to go ahead and get some blood work done with a naturopathic doctor or a DOM to see exactly what’s going on in my body and what I can do to ease symptoms and better support my body.  I’ll be meeting with a master herbalist as well to get the lowdown on what exactly I can and cannot take to aid this process of healing up my body.  This kind of thing is a bit beyond my family herbalist training.

Another thing that I have been thinking of, but not acting on is acupuncture. It was such a huge help through this process the last time and I went three times a week for several months.   We’re lucky enough to  have a group session clinic even in our small town and this is how I was able to afford the treatments last time.  As with anything, consistency and regularity make a difference when it comes to healing, and it would be best for me to get out there at least once per week right now.  However, even once per month would be better than nothing at all.

A little note: if you haven’t checked your household cleaning and beauty products with the Environmental Watch Group’s databases yet, I highly recommend it.  It is hard to clean up your body and begin the path of healing if the poisons are still coming in and piling up.  Also consider staying away from anything with Nitrates and Nitrites, even wine.  Wine is something that though I love it, I can really only handle one glass every few months without feeling badly.   When I’m in a state of regular illness like I am now and anyone just beginning would be it is best to stay away from it entirely.

I’m doing better with the sugar that I’ve been getting in my Alter Eco chocolate bars.  I’ve cut down to only one small square in the evening which equates to a fraction of a gram of sugar.  I’ve also added in a few doses of Motherwort tincture (5 drops) three or so times per day while the detoxing symptoms are present and leaving me feeling stressed and sleep deprived.

Are you out there?  How are you doing?

 

Walking the Walk

Standard

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

Having successfully healed from Fibromyalgia and it’s corresponding depression, anxiety, exhaustion, etc.  I know what I have to do.    You might think that this would make it easier.  And yet, I still struggle with disbelief, and the myriad of other hurdles that keep people from making the choices that they want to be making.   I know that I feel dramatically better when I drink herbal infusions each day, when I take my fermented cod liver oil and probiotics consistently.  I know that sugar makes me feel sluggish with bouts of depression, irritability and heightened sense of stress and fear, and yet, I still eat bits of chocolate bar almost every night; telling myself that because it is dark, organic, fair trade and unrefined it is okay.  Well, it’s not likely to kill me, but it’s not going to allow me the feeling of health and strength that I want so badly.   The sometimes intense cravings for baked goods haven’t subsided yet either.

The healthiest I have ever felt was when my diet was completely free from all grains, additives and sugar.  I drank infusion and many glasses of water each day, took my probiotics and oils, went for regular acupuncture treatments, went to bed at 9 or 10, and listened to a guided meditation as I fell asleep. I was not only free from all symptoms, but also filled with a sense of vitality, peace and happiness that I had no memory of having before.  Simple it seems.  Easy even.   But beneath these simple things lies many lifestyle changes and a shakeup of belief systems.  It also takes the kind of will power and energy that we already feel deficient it.  It’s simple, yes, but not so very easy.

Sometimes I need the reminders of why these things work… in so many words.  Always I remember the underlying lesson.  Always I remember about heavy metals, deficiencies, sensitivites, dysbiosis, candida, fungal and bacterial imbalance… years and years of research fuels the affirmations that I make, but sometimes, I need a little boost.  Sometimes I need to remember the exact why of it all.  Sometimes I need to get real with myself and remember that if I don’t get a different life with the same old choices.

I have the most intensly desire inducing memory of having total freedom not just from symptoms, but also from feeling like a slave to the “lifestyle” and a soldier against cravings.   Food became a side note to my life, a means to an end.  Yes, I enjoyed the food, I made things that tasted good, but all in all I left behind that feeling of need attached to it.  Meals were not the highlight anymore.  I didn’t need chocolate or coffee even, and could hardly remember why I ever thought that I needed them.  I was grateful for the immensity of the feeling of freedom that I had.  That it what I want to get back to.   I don’t just want to be disease free.  I want more than that.  I want to be back to the person that was so alive, so healthy that I stood out in a crowd.   I didn’t have to talk to people about how I lived because they were constantly asking about my skin… the thing they assumed was the source of my “looking so healthy.”  I want to be back to falling asleep easily, waking up refreshed and ready, and filled with a sense of possibility through the days.  I’m ready to let go of being irritable and tired, short with my family, fearful of doing things and tired of life.

We have never juiced before.  It’s something that I never really researched, seemed expensive and possibly unnecessary, but today we decided to give it a try.  Last year I watched a documentary called the The Gerson Miracle and juicing has been on the back of my mind ever since.  We are planting almost 1,000 square feet of vegetables and herbs right now and juicing seems like a reasonable choice for us at this point.  Miso soup with sea vegetables is another thing that I would really like to get into our lives, but I am taking it in chewable doses.  Right now I’m working to continue with going to bed at the same time every night, remembering to stay fully hydrated, drink my infusions and take my oils.  I am recommitting to eliminating the sugar completely and increasing my vegetable intake.

I’ve also started taking 2 teaspoons of Bragg’s raw apple cider vinegar mixed with a heaping teaspoon of raw honey, and 8oz of water.

Currently I have a series of days without pain and oppressive fatigue, but I’m still getting bouts of exhaustion, pain and general feelings of illness ever 5 days or so.  I’ve been without any pain relieving prescriptions for too long to count now.  Months I think.  I’m getting there, and oh god I swear when I get there I will not look back again.  I have learned my lesson.  Nothing that I want to eat, nothing that I want to not be bothered with is worth feeling like this.  I will do what it takes to be healthy and I will remember.  I wish so much that I had made some kind of journal of the process the last time, but it is what it is.  I am doing it now and I know that I will be damned if I forget again.

To our heath, Rebels, to our health.

 

 

Healing Fibromyalgia

Standard

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

Standard

I became aware at a fairly early age that I did not sleep like other people.  It was a difficult thing for me.  Difficult to fall asleep, difficult to stay asleep and difficult to wake up.  As a young girl I loved the late night fun of a sleep over, but hated, hated to stay the night.  I could never get to sleep, I woke up all night, failed to get back to sleep and finally woke up exhausted and wanting nothing but to crawl into my own bed at home.  When I hosted sleep overs I made it clear that sleeping bags were to be brought and no one would be trying to share the bed with me.  Sleep was already a major issue for me.

I traveled across and out of the state to show dogs with my aunt.  I never slept.  We often left before dawn and I had only just fallen asleep.  I couldn’t sleep in the hotels.  I couldn’t sleep when visiting relatives.  I just couldn’t seem to sleep.

By the time I was 12 I was already taking prescription drugs to “treat the insomnia, depression and fibromyalgia”.  It never really helped.  When my first baby was born I was awake for 6 days straight to say nothing of the attempts at finding sleep between night nursing sessions, teething, etc.  By the time I was 23 and he was 1 I was so deeply, painfully, awfully tired that I submitted to a prescription for the well known sleep drug Ambien.  A couple of years later I had a prescription for more than double the recommended dose and was still exhausted.  All. The. Time.

The pain?  It was out of this world.

It was during this time that I became aware of two things: one, that people who experience Fibromyalgia almost never achieve Delta wave/Stage IV/Restorative sleep, and that an experimental drug called Xyrem (also known as the illicit date rape drug, GHB) was now available for treatment of Excessive Daytime Sleepiness in people with Narcolepsy and being tested as a treatment for Fibromyalgia.  The belief was that both disorders are caused by the lack of proper sleep cycles.  It was also said that this was the only drug known to cause State IV sleep and that most others actually prevent that all important stage of sleep.

After convincing my doctor that it was for me, he had to become a registered Xyrem prescribing physician, write the prescription to appear as though it was being prescribed “on label” so that my insurance would cover the $3,000 per month prescription, and give me the benefit of the doubt in my ability to figure out how to use it, as there were no real guidelines.  It was a terrifying, sickening and painful process, but after a few weeks I noticed that though I was still exhausted, lost almost 30 pounds and had intermittent shakes, I was without pain.  For the first time in memory I was without pain.

I described it to my husband when the realization came upon me.  As we were riding in the car I told him that I was “feeling funny”.  I wasn’t feeling bad but I was definitely frightened of this wholly different feeling.  It was through trying to describe the feeling to him that I realized that what I was experiencing was a complete absence of pain.  “It feels like the world used to be made of cold, sharp steel.  Everything, clothes, beds, the air, it was all cold and sharp.  Now it feels like everything in the world is soft, like butter.”  This was the best way that I could explain it.  It was like the softness of a warm knife into butter had become me.  I wept.  Sleep. Who knew.

Almost one year to the day later.  I conceived my second baby and the gig was up.  This was not a pregnancy or breastfeeding friendly prescription.  I’m not sure I can describe the full belly feeling of fear that took hold of me when I realized that I was going to be quitting the prescription and that the pain would likely return soon after.

I had to find another solution.  Forfeit was just not an option.   Now that I knew how it felt to live without pain I could not consider a return to the old life.

Update – Two Difficult Weeks

Standard

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

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

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

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

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

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

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

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

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