So you are probably wondering, what is Takesumi and why should I be interested in it. In a previous post, I listed the several toxins and infections Dr Shores tested me positive for: 

• Heavy Metals
• Arsenec
• Borrelia Burgdorferi – lyme
• Chloroform
• Formaldehyde
• H-pylori

Takesumi, which is a carbonized bamboo supplement, is an effective and the most gentle way Dr. Shores knows to rid the body of toxins and infections. Here is a description fromMichael Lebowitz D.C.:

 Takesumi, on AK testing, fairly routinely blocks positive tests to toxic metals, chemicals, and often foods too. I look at it as a supreme detoxification product. It also appears to adsorb myco and endotoxins (and other bio-toxins) from various organisms, take the load off the liver and kidneys and thus act in an anti-aging fashion. Takesumi is also reported to adsorb radiation (radon, nuclear, etc.)

 

Michael Lebowitz D.C. has been a researcher in applied kinesiology and nutrition for over 30 years, and this statement was based on his clinical testing and research. Takesumi also has anti-fungal, anti-bacteria, anti-parasitic and anti-viral properties.

I began taking the Takesumi over two weeks ago. Some of the effects I have been feeling are headaches, muscle aches, fatigue, my skin (especially on my face) feeling hot, and some dehydration. I naturally drink a lot of water each day, but I have had to increase my water consumption considerably and I still wonder if I am drinking enough. Dr. Shores warned me about the side effects of doing a detox, and I am not experiencing anything out of the ordinary, but I am experiencing it for longer than anticipated. Although the effects sound similar to a fibromyalgia flare-up, they are not at that level of severity – thank goodness!

Now for the good news. My fibrofog is much diminished since starting the detox! Even though my body is feeling achy and fatigued, my brain is feeling as sharp as it has since the accident. I have been much more productive and organized, even with the headaches. Honestly if it were not for the improvement I am having with my cognitive function, I am not sure I would continue with the detox, but it has made me a believer and I am sticking with it in the hopes that I soon see other improvements as well. Another of my support group members, who is also on the detox under Dr. Shores supervision, has already tested negative for all of the infections he originally found in her, and she has been taking the Takesumi just a week longer than I have. That gives me even more hope. Every evening after I mix up the carbonized bamboo with some water I yell “TAKESUMI” in my loud ninja-warrior voice and then swallow it down. Silly, yes, but I am a warrior in my battle against fibromyalgia, and if I have to be a warrior, being a ninja is a pretty cool thing!

I will keep you posted on any changes and improvements I have with my detox. If you have any questions about the Takesumi, please leave them in the comments. Dr. Shores has been generous enough in the past to have direct dialogues with readers via the comments. If he is unavailable I can try to look into it myself. 

And now for my little disclaimer:

In a continuing effort to live well with Fibromyalgia I am going to be researching and trying new and different things to help improve my health.  I will report on my research and my own personal experiences, but I am not a doctor and therefore will not be telling anyone to try what I do. If you think you may benefit from my experiences, please check with a medical professional to see if it is right for you.

Can Fibromyalgia have superpowers, or does it only feel that way? I am not sure, but on the morning of September 27, 2006, my Fibromyalgia intensified to a level I did not think was possible.

I was driving to one of my sales accounts that was nearly two hours away. It was one of my least favorite accounts because of the distance, and because they were very high maintenance but very low volume. So I was already in a mood when the traffic on the freeway slowed suddenly from a comfortable 70 MPH to an irritating 20 MPH – you know, one of those congestions in traffic that occur for no apparent reason, and let up again as quickly as they began. After years of driving San Diego County to call on my accounts I had become a very conscientious driver. I am convinced you see the worst of human nature on the roads. People get ugly when they get behind the wheel. On this morning I began slowing with the traffic and kept a good distance between me and the car ahead of me. I was going 20 MPH max, probably less, when I looked in my rear-view mirror and saw a giant green beast flying up behind me. I didn’t even have time to think “Oh shit!” before the truck slammed into the back of me and sent my car flying off into the center median. Fortunately the median between the north and south lanes of traffic was big and grassy, and my car ended up there instead of in the back end of the vehicle in front of me.

I sat stunned, with my eyes closed and my head spinning. It felt like someone had injected a gallon of nauseous fluid into my brain and if I moved or opened my mouth it would all come spilling out. I think I was holding my breath because all of a sudden my body forced me to take a huge gulp of air which quieted the nausea a little. I could hear the young boy who hit me standing at the driver’s side window, knocking and asking me if I was okay. He kept saying “ma’am, ma’am, ma’am,” and I could hear the anxiety in his voice. I finally opened my eyes and turned to him just to put his mind at ease, but my brain still felt like it was swimming in that nauseous liquid.

I ended up in emergency again, this time with severe whiplash and a concussion. Again I was looking at another long road to recovery. I kept thinking how lucky and grateful I was that I had not suffered any broken bones or more serious injuries, but I had no idea the extent of the injuries to my brain and how this accident would change my Fibromyalgia from a relatively mild and livable case into an extreme superpower! So what does Fibromyalgia with superpowers look like you ask? Putting the brain trauma aside for now, I will just describe to you the changes in my FM.

Pain! Oh I thought I knew pain. I thought the pain and flare-ups I had experienced over the 10 years I had been living with FM was the most my body and mind could ever possibly manage, but I was wrong. You know that scale the doctors have, when they ask you to rate your pain from 1 to 10, with 10 being the most pain you have ever been in? Well I had not so infrequently expressed my pain as severe as an 8 or a 9 in reference to one of my many recurring flare-ups. But what was an 8 or a 9 before the accident was now a 5 or 6. My new 8-9 kicked the old 8-9′s butt. My new pain scale was re-calibrated to the kind of intense, burning, stabbing, aching, nauseating, unrelenting pain that makes you think if it doesn’t let up soon you will surely lose your mind or do something drastic to make it stop. It was the kind of pain that found me curled up on the bathroom floor in misery while my husband looked on unable to even touch me to help me get up. It was not a nice pain!

But my FM superpowers did not stop at my ability to feel pain at an unimaginable level. They also awakened my senses to sounds, smells and bold-vibrant colors. I have excellent hearing – superb is how my ENT described it – which should be an asset right? Well with my FM superpowers, my previously enjoyable ability to hear the many nuances in the world around me, became a detriment in that now I felt like I was constantly being yelled out. The TV, radio, if my dogs barked, when the alarm went off –  any loud abrupt noise was like a full-fisted slug to the back of my head and a green light for my pain to shoot up on the pain scale. Intense smells and bold colors had the same physical affect on me. Sensory overload with a punch to the face for good measure!

And lets talk about the weather shall we. Before the accident I had heat sensitivity, but only to extreme heat, and no sensitivity to the cold. But with my new FM superpowers, my body responded to changes in temperature like a delicate flower. Anything above 85 degrees and my pain left me wilted and useless, and anything below 65 degrees my body was tense and knotted with pain. So now I am equipped with a handy dandy, built-in weather device. I can sense the slightest change in temperature and tell you the degree based on my pain level. How handy is that!

I could go on and talk about the fatigue and the sleep deprivation and my complete inability to formulate an intelligent sentence, but I think you get my point. So that is how my Fibromyalgia got its superpowers, and this is my new and current reality. My Fibromyalgia is everything it had been to the power of ten – with several new symptoms thrown in for variety and superpower affect. They do not come with a cape, or an invisible airplane, or any of the cool accessories you might expect for a superpower. But if I were to narrate and chronicle them into a comic book, they would look something like this - 

Comic Fight Club

Just a glimpse into my internal fight club if I were to illustrate my Fibromyalgia symptoms. I am currently taking bets that I am eventually going to kick all their butts if anyone is interested.

On Wednesday my support group had our laughter meditation (referred to as laughter yoga in my previous post) session with Sarito Sun, Laughter Healer and Coach, Hypnotherapist and Meditation Instructor. Now I have to admit I was a little skeptical about the evening. I watched the videos on laughter yoga and I wondered if I would be too self-conscious to let myself go enough and enjoy the experience. Turns out I had no problem at all letting go. If only I had a video of the evening to share with you how fun and freeing it was. Fifteen group members were in attendance, and for about a half hour, all fifteen of us were laughing, and moving, and smiling in a state of pure joy. And it all started off with a few simple laughter exercises which forced us to “fake” laugh. It did not take long until the laughter and joy became real.

It was such a treat to look around the room and see the happy expressions on everyone’s face. Some members literally had to drag themselves to the meeting that evening they were in such a bad way, but everyone was able to participate and we all left feeling a little lighter, and little happier. The half hour of laughter did not cure any of us, and it truthfully may have only distracted us from our pain and fatigue, but it was a beautiful gift none the less. Sarito brought a guest with her who shared his experience of recovery through the use of laughter meditation. In his experience, 30 minutes of laughter a day – fake or  not – can reduce pain symptoms and improve sleep and fatigue. After my half hour experience I can only say it is the most fun I have had in my quest to improve my health, and it is definitely worth trying. I am smiling right now as I relive the evening to share with you!

On Friday I had my first appointment with Dr. Shores, the holistic chiropractor who spoke at a previous support group meeting and also contributed to my blog. It was an enlightening appointment. Through Bio-response testing he was able to determine I have several issues which are likely contributing to, our may be the cause of my Fibromyalgia.

Here is the breakdown of what Dr. Shores believes to be my greatest issues:

40% – Structural. Due most likely to the slip and fall which initially brought on my Fibromyalgia, and the car accident which gave my FM superpowers (post still coming – I promise!)

30% – Grain Intolerance & Dairy Allergy. Turns out I am gluten intolerant. This is the thing I most feared learning. I think I have suspected it for some time but did not want to face having to drastically change my diet - eliminating all wheat and grain based foods. Again through Bio-response Dr. Shores demonstrated how the gluten intolerance was partially responsible for my muscle pain. In my understanding my body treats the gluten as an infection, and it draws the “infection” away from my digestive tract and into my muscle to help my body eliminate it. This causes muscle pain, inflammation and spasms. YES, YES, & YES!!! He also believes my dairy allergy should clear up if I eliminate gluten from my diet. This is going to be a huge lifestyle change for me, and I am certain I will be writing about it. Anyone out there with suggestion or advice, I gladly welcome it.

30% – Toxin/Infection – Dr. Shores’ presentation on heavy metal toxins is one of the things that most intrigued me about his philosophy of wellness. After hearing him speak about how metal filings constantly release fumes and the fumes go straight to our brains, I suspected he was right in that this could be a cause/contributing factor to fibrofog. It turns out I tested positive for all of the following:

• Heavy Metals
• Arsenec
• Borrelia Burgdorferi – lyme
• Chloroform
• Formaldehyde
• H-pylori

Although this list looks overwhelming, Dr. Shores assured me not to panic. In his estimation the thing I should be most concerned with, and will get the most improvement from correcting is the gluten intolerance. As part of my treatment I will be taking a supplement to help my body detox, but I am beginning with eliminating the gluten.

He also used his special gentle adjusting instrument (which I can never remember the name of) to correct some of my structural issues. I have been walking around for as long as I can remember with my right leg slightly shorter than my left. With just a few adjustments it was corrected. I stood up and could tell instantly. It was a weird sensation! I will report back soon about how I am doing with his treatment and recommendations. I think I may finally be on to something.

And if the laughter and the holistic healing weren’t enough, Saturday brought me another great tool for my arsenal in my battle against Fibromyalgia. One of my newest group members is also a certified yoga instructor. She arranged to teach a special gentle yoga class for group members at the Wellness Center. Yoga helped relieve her Fibromyalgia symptoms so much that she became an instructor in order to share and encourage other FM sufferers to try it for themselves. Eight brave members attended and we were lead through gentle movements and also taught modifications of movements that we could take with us into most any yoga class.

I had taken yoga once before and it was an awful experience. The instructor was not gentle or nurturing and seemed put-out that a newbie was in her class. Saturday was a completely opposite experience and I am now a yoga convert. It was like my muscles were waking up from a long cryogenic freeze. I loved it so much that I took another class on Sunday with a different instructor. I was able to modify several of the movements and keep up for the most part. I was not the most graceful participant, but I continued to enjoy the awakening my muscles experienced the day before. I cannot think of a better way to describe it. I know my muscles thanked me, and after taking it easy for a couple of days I am heading back tomorrow. I have had no negative effects or a flare-up like I did from the H2O Cardio class.

So that happened! I don’t know if it was the laughter, or the adjustment, or the yoga, but I am feeling better – better than I have since taking the H2O Cardio class. My mind is finally clear enough to write a post, and my muscles are not burning with fire after sitting at my desk for a couple of hours to write it. Woo hoo!

It has been nearly thirteen years now since the onset of my FM. At the time I was a healthy and active person. I worked full-time in management at a high-energy, high-stress job which I thrived on. I had one speed during this period of my life – fast and furious! In addition to working full-time, I took evening college courses. I had an active social life which kept me going the nights I was not in class. I was physically fit and active – rollerblading, hiking, backpacking. My days were full and my down time was pretty much non-existent.

And then early one morning as I was showering for work, everything changed. It was about 5AM. I had my back to the water and turned towards the wall to grab the shampoo. I felt my feet slip out from underneath me and understood immediately I was going to be hurt. There was nothing I could do. Slowly I started falling to my right, out of the tub and towards the toilet. There was only the thin, filmy shower curtain to slow my progress. With nothing to grab hold of, and no way to stop my momentum, all of my body weight was behind the impact as my head smacked into the porcelain toilet tank. The collision was strong, solid and in that moment painless. I fell to the floor stunned, awaiting the pain that I knew was lying just beneath the shock.

From there my memories are vague. I recall the nurse in the ER asking me “Can you point to your nose for me?” I recognized the word “nose,” but I could not contribute the familiar word to any part of my body. I hit my head just above my right temple. The impact was so hard I broke the lid to the toilet tank. Don’t think that hasn’t been a source of humor for my family over the years! It is one of the reasons my husband and I named our business Hard Head Media (the other being that he is the most stubborn person in the world!).

I was on disability for 6 months trying to recover from this accident. I never did. The trauma to my brain improved, but the symptoms of Fibromyalgia began to set in. The all over body pain was the worst of it. It was so bad I had to lay in bed naked because I could not stand to feel clothes against my skin. Even the weight of the sheet was sometimes too much. PAIN! Everything else was gone and pain became the dominant fixture in my life. Each time I complained to my doctor I was feeling worse, she said “You couldn’t possible be. Enough time has passed. You should be feeling better by now.” It would make me so angry and desperate to sit in her office and plead with her for help, only to be handed another prescription for drugs. I did not want to mask the symptoms, I wanted them to GO AWAY!

I was persistent. Finally she sent me to a Rheumatologist who then sent me to a Neurologist. The Neurologist was fun! I was his last patient of the day. My appointment was for 4PM. At 5:30PM I was still sitting in his waiting room. First he tried to send me away, but I refused. I wanted answers and he was going to give them to me. He took one look at me – not my chart, just me – and said “You want me to tell you you have a brain tumor. Well I am not going to tell you you have a brain tumor. But if it turns out you do have a brain tumor, you are the kind of person who will sue me.” He was a lovely man. We still exchange Christmas cards to this day! But he did finally do one thing right for me. I sat in his office determined and unintimidated and he finally consented that he thought I had Fibromyalgia. I had never heard the term Fibromyalgia before, but I was relieved to have finally been given a name for what he believed was causing all of my symptoms. He referred me to a pain specialist and she was the one who helped me get my symptoms under control.

Dr. DuQuett is her name. She was (probably still is) a no muss, no fuss kind of doctor. She was firm, direct, and not for a second did she encourage me to feel sorry for myself or let myself feel victimized. She is the one who refused to extend my disability. She forced me to redefine my life and discover how I could still be a productive person, even with a chronic pain condition. Tough love. First she put me through 16 weeks of therapy at a pain clinic though. There I learned how to reduce my symptoms with physical and aquatic therapy, meditation and relaxation, and biofeedback. I have said it before, I believe she gave me an incredible gift. I still suffered through many Fibromyalgia flare-ups after my treatment, and there were times that I did wish I was on permanent disability, but the majority of the time I managed, and sometimes I even thrived.

From when my treatment at the pain clinic ended in 1997 until the next inciting factor in 2006, I managed fairly well. My life was different. Fibromyalgia was a constant presence, but I learned to adjust to my new reality. I became a freelance sales rep and grew my territory into one of the top in the nation. I continued with my evening college courses, and in 2004 graduated with a degree in Literature and Writing. I got married to the amazing man who I had just started dating 6 weeks before the tub accident. We bought our first home together and traveled frequently. Life was good. But that all came to a screeching halt on the day my Fibromyalgia got superpowers! Dunt, dunt, duhn!!!

To be continued…

Continued here: How my Fibromyalgia Got Superpowers.

I wasn’t going to talk about it. I probably shouldn’t talk about it. But now I am going to talk about it.

I have spent the last few weeks preparing for a deposition for a lawsuit I am involved in. I have filed a claim against the insurance of a person who rear-ended me. I will not go into the details, but they are 100% liable, and the insurance company is 100% trying to screw me!

This accident has changed my entire life. I gave up my lucrative sales position because I could no longer maintain my territory. I have suffered tremendous pain as a result of the accident and my Fibromyalgia has become much worse. The last two years since the accident have been hell – physically and emotionally.

Before then I was able to work full-time and live a relatively normal life with Fibromyalgia. Sure I had my flare-ups and my bad days, but it has been one continuous bad day since the accident. And if the pain wasn’t bad enough, the financial burden it has placed on my husband and me is enough to end most marriages.

And now they are dissecting my life as though I were a criminal on trial. I have to provide them with 10 plus years of medical records; all of my personal tax and banking information from the past 7 years; plus all of my sales and commission reports from 3 years before the accident until now. UNBELIEVABLE!!!

So if I have neglected my blog for the past few days this is why. I have been searching through boxes and files to come up with everything they need. I do not want to give them any ammunition to lowball my claim any further. Every time I answer the pages and pages of questions they have and provide them with the documents they need, they come up with more! I don’t know about you, but I do not organize my life so that I am readily prepared for this type of inquisition. Plain and simple, this has been a bitch.

When this is all settled and over, I am going to go into the details.  I am going to tell you all every painful detail of this experience that has been the underlying force behind my every thought, feeling and emotion over the past two years.  Seriously, this accident has influenced my life more than any other event in my adult life.  I am a believer that something good comes out of everything bad.  Well, it better be something REALLY good, and it better come soon!

I have spent the past 8 days dealing with an awful case of hives, and the past two in a Benadryl induced coma to keep me from tearing my skin off. I had hives from my scalp and eyelids, all the way down between my toes. Maddening! Two other times in my adult life I have had similar outbreaks, and each time they have been brought on by stress. Do you think my body is trying to tell me that I do not process stress very well? Clearly I don’t, and I absolutely believe that my Fibromyalgia is also a function of this.

Although it was a traumatic injury that caused the onset of my FM, I think maybe I had a predisposition to the condition, the same predisposition that makes me an excellent candidate for a hives outbreak.

I have always believed I am much tougher than I actually am. As a small girl I would rough house with my Dad and Uncle. They would swat me down and toss me aside like the little nuisance I was, but I would never stop. I would go back and back and back, thinking eventually I would get the best of them, eventually I would succeed, but of course I never did. But I never let myself give up. They always had to make me quit. My Uncle tells me that this is the thing he remembers best and loves most about me. It is not only that I couldn’t quit, it is also that somehow I knew I never wanted to show or give into my weaknesses.  I don’t think I actually believed I could ever beat them, but if I kept at it, I would never have to admit to them or to myself that I was weaker.

I have pretty much lived my entire adult life the same way. I don’t know how to say no when challenged with something. I don’t know how to ask for help. I don’t know how to show any kind of weakness. And I don’t know how to slow down until my body breaks down and tells me it is time to quit. Even after 11 years of living with Fibromyalgia, I still have an incredibly hard time admitting when I hurt, showing any kind of weakness, and asking for any kind of help or understanding. I can smile and socialize through most any flare-up, only to come crashing down when no one is looking.

Two years ago I was in a terrible rear-end collision. When I got to Urgent Care I was asked to rate my pain level on a scale of 1-10. I said 4. What I really should have said was 8-9, but then that would have been admitting weakness. That would have been a plea for help. I am just not wired that way. I will always underestimate and underreport my needs and my condition. And yes as I sit here writing this I can logically see that I am only hurting myself by being this way, but how do you change a life long behavior?

Before my accident two years ago my primary care doctor recommended I see a counselor. She believes that there is a link between FM and early childhood. I had always silently believed I could benefit from counseling, but I resisted for many reasons. I am really good at compartmentalizing my life. I hang on tightly to the good and suppress the bad. I know this about myself and I did not want to be forced to face or deal with the things I have suppressed. But then maybe all of my suppressions are the very things that make me predisposed to Fibromyalgia. I decided to give it a try and soon began meeting once a week with a very nice therapist. We bonded instantly over our love of animals.

I was comfortable with her, but still reserved. It was maybe into my first or second session with her that she told me I am a caretaker. Without a hesitation I shot back “No I’m not. I am actually kind of a selfish person,” and this is truly what I believe. I think there is a fine line between caretaker and control freak. I consider myself the later. I love to take care of and do things for my husband, but if I am completely honest it is also that I don’t like to let go of the control. This has caused quite a few arguments in our marriage. Poor guy, sometimes feels like he can’t do anything right. He wants to help me and relieve some of my burdens, but if he doesn’t do things the way I would I get stressed and end up taking over. Not fair.

My therapist never changed her “caretaker” analysis of me, but she did admit that I would benefit if I could just learn to let go a little. Her suggestion for how I could achieve this – to start writing. I can’t tell you how much I resisted this. Seems crazy now that I am pouring all of this out, but I simply could not write. She would send me home with exercises and I would never do them; could never do them. Finally she tried a visualization technique with me. The first time we tried it went nowhere. I was unable to relax enough. The second time it was different. Maybe she caught me on the one day of the year that I let my guard down, but as I closed my eyes and listened to her gently lead me, I felt myself letting go.

She asked me to visualize a safe place. A place where I could go and let down all my defenses and just write. All of a sudden I found myself walking through a beautiful lush forest. The air was cool but not cold, and the ground was soft beneath my feet. Up ahead I could see a doorway to a log cabin. I entered without fear and found myself in a large one-room cabin built into a hillside. The wall to my right was one giant floor-to-ceiling bookshelf stuffed with books. To the left was a big comfy couch. And straight ahead was a beautiful wooden desk facing out on the valley below. The room was light and airy because the entire front wall of the cabin was windows.

Even though logically I could still feel myself in my counselor’s office, I was somehow transported to this cabin – to my cabin. To the safe place I created, where I hoped I could sit and write and let everything go.

Then she asked me to look around and tell her if I was alone. I was. She asked me to try to visualize my guide. She said I would need a guide, someone to help me break through my barriers so I could begin to write. I looked around but there was no one. She prodded me further stating that it would probably be someone I knew, someone I trusted. I tried but I couldn’t find my guide. I found myself walking up to the great expanse of window looking out on the beauty in front of me. And then I looked down and there was a bear – a great big, giant black bear, and he was eating. I told her about the bear and she asked me, “Is he your guide?” I looked down at him, and asked without saying a word. He looked back up to me and replied with a slow shake of his head. He was not my guide. He was my protector. I started crying – a deep, long stored, uncontrollable cry. I could not stop. My counselor gently brought me out of my visualization and I sat there drained. She looked at me and smiled. “We have some work to do.”

And then the accident happened. I stopped my sessions during my rehabilitation and have not been back. But I think the fact that I am sitting here today writing about this proves that I have made some progress on my own. She gets all the credit for getting me started. I think about the cabin and the bear – a lot. I love that bear. I still have not found my guide, but maybe this journey I am taking through Fibromyalgia Haven will help me with my search.

I definitely believe this blog is helping me to open up and let go of some of my control. I missed it the last couple of days that I took off because of the hives and during the time I was in Hawaii. I am drawn to it several times throughout the day even though I know it has not changed. Maybe Fibrohaven is my cabin in the woods. At the very least it is a beginning, a very early beginning. This week the hives came and reminded me – I have some work to do!