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.
Showing posts with label pain. Show all posts
Showing posts with label pain. Show all posts
Thursday, March 22, 2012
The Role of Sleep and the Successful (Banned) Prescription
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.
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.
Thursday, July 14, 2011
The Past 5 Wks - Post Detox - LIFE RETURNS
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
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
Wednesday, July 13, 2011
Let's Be Clear
I've just had a member of the board of the Fibormyalgia & Chronic Pain Association publicly dismiss me and warn people against anyone claiming to have cured their Fibromyalgia. Her reason: If there were a way SHE would know about it. It seems that in order to have truly eradicated my FM I needed to have held a press conference and been validated by the all knowing Association. Not that I think they would have paid me any attention.... after all, where would someone like that be if people suddenly ridding themselves of their pain and symptoms all on their own. Otherwise they may have noticed that there a quite a few people claiming to have cured their Fibromyalgia. A quick #Fibromyalgia search on Twitter will quickly overwhelm you. You could get buried for days following the symptom elimination links on the internet.
But, to be fair. Let's just be more impeccable with our words from now on. "Cure" is a word that is now owned mostly by the establishments that have done little but tell people that they need millions of dollars to "find a cure" but never have. Let's let them have the word. We don't "cure". We "Heal." We "Eliminate." We "Terminate." We "find the way to live free of symptoms and return to a level of health that we may not remember ever having had." We cast out, count out, cut out, defeat, discharge, dispense with, dispose of, do away with, drive out, drop, eject, eradicate, evict, expel, exterminate, get rid of, knock out, phase out, put out, rub out, rule out, set aside, shut the door on, slay, stamp out, take out, waste, or wipe out.
We don't "cure" We Annihilate.
While we are it, let's look at two more words. Just to be clear...
Heal:
Rebel:
I'd like to warn you all to be very aware of any one or any organization telling you that something isn't possible. It's always "impossible" until someone does it. Then, somehow, it's still impossible until they do it.
Rebel! Take control of your own health!
Oh, and let's not forget to be clear here:
I am NOT a doctor. I have NO legal right to tell you what to do. In fact, you would do well to always CHECK WITH AS MANY SOURCES AS POSSIBLE before you do anything to your body. Check with your acupuncturist, your doctor of oriental medicine, your certified herbalist, your nutritionist or any healer of your choice.
What I am is a person who suffered for nearly two decades; buried alive beneath a crushing "disease" and drowning in treatments that always made me feel worse and often added new symptoms. If Fibromyalgia where caused by what the authorities suggest then there would be little hope. But, as usual, symptoms are being mistaken as causes. There are root causes alright and they can be "eliminated."
What I am is a busy mom, a survivor, a homesteader, a traveler, an artist and a person who has carved out time to offer up anything that I have to share in response to the hundreds of emails I've received asking for just that. It's taken me three years to put this together. Three years to tear myself away from the new found ability to LIVE my life and return to thinking about something that I never intend to experience. I hope you find what you need here to help you go out and heal yourself.
But, to be fair. Let's just be more impeccable with our words from now on. "Cure" is a word that is now owned mostly by the establishments that have done little but tell people that they need millions of dollars to "find a cure" but never have. Let's let them have the word. We don't "cure". We "Heal." We "Eliminate." We "Terminate." We "find the way to live free of symptoms and return to a level of health that we may not remember ever having had." We cast out, count out, cut out, defeat, discharge, dispense with, dispose of, do away with, drive out, drop, eject, eradicate, evict, expel, exterminate, get rid of, knock out, phase out, put out, rub out, rule out, set aside, shut the door on, slay, stamp out, take out, waste, or wipe out.
We don't "cure" We Annihilate.
While we are it, let's look at two more words. Just to be clear...
Heal:
–verb (used with object)
1. to make healthy, whole, or sound; restore to health; free from ailment.
2.to bring to an end or conclusion
3.to free from evil; cleanse; purify: to heal the soul.
–verb (used without object)
4.to effect a cure. <whoops there it is again! let's change that. 4. to dispense with symptoms
5.(of a wound, broken bone, etc.) to become whole or sound; mend; get well (often followed by up or over).
Rebel:
–noun
1. a person who refuses allegiance to, resists, or rises in arms against government or ruler of his or her country.
2. a person who resists any authority, control, or tradition.
I'd like to warn you all to be very aware of any one or any organization telling you that something isn't possible. It's always "impossible" until someone does it. Then, somehow, it's still impossible until they do it.
Rebel! Take control of your own health!
Oh, and let's not forget to be clear here:
I am NOT a doctor. I have NO legal right to tell you what to do. In fact, you would do well to always CHECK WITH AS MANY SOURCES AS POSSIBLE before you do anything to your body. Check with your acupuncturist, your doctor of oriental medicine, your certified herbalist, your nutritionist or any healer of your choice.
What I am is a person who suffered for nearly two decades; buried alive beneath a crushing "disease" and drowning in treatments that always made me feel worse and often added new symptoms. If Fibromyalgia where caused by what the authorities suggest then there would be little hope. But, as usual, symptoms are being mistaken as causes. There are root causes alright and they can be "eliminated."
What I am is a busy mom, a survivor, a homesteader, a traveler, an artist and a person who has carved out time to offer up anything that I have to share in response to the hundreds of emails I've received asking for just that. It's taken me three years to put this together. Three years to tear myself away from the new found ability to LIVE my life and return to thinking about something that I never intend to experience. I hope you find what you need here to help you go out and heal yourself.
Tuesday, May 3, 2011
Healing Fibromyalgia
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:
[youtube http://www.youtube.com/watch?v=n8XB5ZWnLTA&w=425&h=349]
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:
[youtube http://www.youtube.com/watch?v=n8XB5ZWnLTA&w=425&h=349]
Wednesday, April 27, 2011
Sleep - Part 1
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.
Friday, April 22, 2011
Update - Two Difficult Weeks
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.
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.
Saturday, April 2, 2011
Update - Week 2 Beginning
We took a trip to Santa Fe this past week to pick up the pasture raised meat we buy from a farmer in West Texas. It comes out to be ever, ever so much more nutritious than the meat we can buy at market, and even with the trip to Santa Fe it is considerably less expensive. This time we brought home 82 pounds of meat and soup bones.
Because it is about two hours drive, and we have two small children and an infant, we prefer to stay the night, take in the museums, and get the shopping done that we cannot do in Taos where we have only a small Walmart for most necessities. This can pose a problem for a family that is working with severe diet restrictions, a budget and supplementation. Sooo, we use an online booking site to score our favorite time-share hotel/condo. The units come with a bedroom, full, stocked kitchen, dining table, and living room, for around $70 in the summer and $62 in the winter. This allows us to prepare breakfast and dinner at our hotel and keep our food ready for packing a healthy, on the go lunch.
This time we opted for organic, homemade granola and plain yogurt with honey for breakfast so that we could just lounge in our PJs and have a lazy morning before taking in the town. For lunch we had sliced Applegate Farms Peperoni, raw organic cheddar, rice crisp crackers, apples, and oranges. For snacks we had apples, oranges, dried figs, dried mango, raw almonds, pecans, peanuts and raisins. Nichola had an extra snack of Wild Planet Sardines in marinara sauce and Quinn had the lemon variety. They will each eat about 2/3 of a can and share some with Simone and Jeff. Packed full of healthy omega fatty acids, and lacking in the mercury found in larger fish like tuna, this is a wonderful, not too expensive snack for them to be having. I'll be honest. I can't eat them straight. Marinara sauce, or no, they wig me out. I prefer to have them mixed in canola-free mayo with spices and served on crackers, just like tuna salad.
For dinner we took a jar of pre-soaked chickpeas and made soup.
Because of the fridge in the hotel (most come with at least a mini-fridge these days) we were able to take our cod liver oil, and I used my ceramic lidded coffee cup to take my tinctures through-out the day. I found though that I only felt like I needed them once. Sticking to "the rules" is helping a lot faster than I had expected. I also noticed that the city water did a real number on the kid's skin, and everyone developed a stuffy-head feeling as we entered the city that dissipated as we got about 45 minutes outside of the city on our way home. I guess there really is something to say about clean country air and water.
Since we've been home I have only taken my tinctures in the morning and evening. I've been going to bed by 10pm and waking up feeling a lot less achy. Today I'm definitely feeling just plain tired, but altogether not "sick".
I'm looking forward to homemade hot cocoa tonight and planning on a lazy night with a DVD (The Bucket List). Neeka fell asleep (hopefully for the night) at 7pm. She's been fighting a bit of tonsilitis. Here's hoping that the baby will follow her by 8:30 and I can get to bed (post movie) by 10pm again.
To our health!
xoxo
Because it is about two hours drive, and we have two small children and an infant, we prefer to stay the night, take in the museums, and get the shopping done that we cannot do in Taos where we have only a small Walmart for most necessities. This can pose a problem for a family that is working with severe diet restrictions, a budget and supplementation. Sooo, we use an online booking site to score our favorite time-share hotel/condo. The units come with a bedroom, full, stocked kitchen, dining table, and living room, for around $70 in the summer and $62 in the winter. This allows us to prepare breakfast and dinner at our hotel and keep our food ready for packing a healthy, on the go lunch.
This time we opted for organic, homemade granola and plain yogurt with honey for breakfast so that we could just lounge in our PJs and have a lazy morning before taking in the town. For lunch we had sliced Applegate Farms Peperoni, raw organic cheddar, rice crisp crackers, apples, and oranges. For snacks we had apples, oranges, dried figs, dried mango, raw almonds, pecans, peanuts and raisins. Nichola had an extra snack of Wild Planet Sardines in marinara sauce and Quinn had the lemon variety. They will each eat about 2/3 of a can and share some with Simone and Jeff. Packed full of healthy omega fatty acids, and lacking in the mercury found in larger fish like tuna, this is a wonderful, not too expensive snack for them to be having. I'll be honest. I can't eat them straight. Marinara sauce, or no, they wig me out. I prefer to have them mixed in canola-free mayo with spices and served on crackers, just like tuna salad.
For dinner we took a jar of pre-soaked chickpeas and made soup.
Because of the fridge in the hotel (most come with at least a mini-fridge these days) we were able to take our cod liver oil, and I used my ceramic lidded coffee cup to take my tinctures through-out the day. I found though that I only felt like I needed them once. Sticking to "the rules" is helping a lot faster than I had expected. I also noticed that the city water did a real number on the kid's skin, and everyone developed a stuffy-head feeling as we entered the city that dissipated as we got about 45 minutes outside of the city on our way home. I guess there really is something to say about clean country air and water.
Since we've been home I have only taken my tinctures in the morning and evening. I've been going to bed by 10pm and waking up feeling a lot less achy. Today I'm definitely feeling just plain tired, but altogether not "sick".
I'm looking forward to homemade hot cocoa tonight and planning on a lazy night with a DVD (The Bucket List). Neeka fell asleep (hopefully for the night) at 7pm. She's been fighting a bit of tonsilitis. Here's hoping that the baby will follow her by 8:30 and I can get to bed (post movie) by 10pm again.
To our health!
xoxo
Thursday, March 24, 2011
You Can't Keep a Good REBEL Down
I have fallen off the health bandwagon. The Fibromyalgia is in full bloom again, but it stinks like the blooming of one of those disgusting Corpse Flowers. I say I fell of the wagon, but truthfully I leaned too damn far off the side trying to pull the temptations onto the wagon with me.
And so, from the hell of Fibro-land... from the pits of near excruciating fatigue, from the depths of ever threatening, often unendurable pain, the confusion of brain-fog and the anxiety and depression that it all brings... I finally give you Healing Rebel.
I'd love for you to join me, but feel free to simply watch as I claw, slide, scrape, curse, cry, drag myself out of this hole (that I knew better than to toy with).
I'm going to kick the painkillers and reclaim the life of strength, comfort, peace, happiness and energy that I learned how to grab years ago.
I'm 31. 17.5 years were stolen by the FibroBeast. Today is the beginning of the end.
Treat, Manage and Supress are no longer part of my vocabulary.
I am a Rebel.
I am a Healer.
As of today; no. more. wheat.
No more gluten.
No more "natural flavors", carageenan, binders, emulsifiers, derivatives.
No more bullshit. No more excuses.
It's me or them. Sink or swim. Suck it up. Buck up.
I'll write honestly about my failures, my feelings, struggles and successes.
Bring it, Baby. You can't keep a good Rebel down.
Subscribe to:
Posts (Atom)