Laughing and crying, you know it's the same release. Joni Mitchell

Laughing and crying, you know it's the same release. Joni Mitchell

Wednesday, August 31, 2011

Major Changes at National FM Organizations

The National Fibromyalgia Association (NFA) has been in turmoil over the last several years, since the economic downturn in 2007. The Founder and President of the NFA, Lynne Matallana, retired June 1, 2011 after 14 years of dedicated work in serving the FM community. She continues to heal from a terrible accident and major surgery last September, which has impacted her ability to continue with the organization. In the vacuum created by the NFA's financial and organizational troubles, another organization, the National Fibromyalgia and Chronic Pain Association (NFMCPA) was formed and has been collaborating with the NFA. You can read more about the background of these changes in Lynne's own words at the NFA website.

Below is the latest letter from Herb Smith, Chairman of the NFA:

August 2011 Ltr from Herb Smith
August 2011 Ltr from Herb Smith 2

Enhanced by Zemanta

Saturday, August 27, 2011

Joy's Got Her Groove Back

I'm calling the last twelve months my "lost" year. Not only did I loose all my time and energy in dealing with one health crisis after another, but I lost myself as well. I've been working diligently to reconnect with my personal power, to revive my creative drive and to remember who I really am - a Powerful Creative Being! I've gone on shamanic journeys to retrieve my soul. I've traveled to fun and exotic places to rejuvenate myself. I've worked with my therapist to face my fears and heal my emotional being. And I'm happy to report that it's paying off. I finally feel the call to create; I'm energized by my creative projects and I'm excited about what I'm working on. Let me give you two examples.

My illustration for "Rivkah and the Mice"
Last winter, my rabbi asked me to be on the editorial board to revive our synagogue's literary magazine, Lichora, which has been on hiatus for quite awhile. The board decided to get our first issue out in time for the High Holidays (which are quickly approaching). I wanted to write about the spiritual journey I've taken through my "lost" year, and I told the editor that I would submit an article. But I just didn't have it in me to write the damn thing. Then one morning I woke up and the whole thing came pouring out of me. Still, the rough draft sat on my desk for months. With the deadline looming, I decided it was time to face the empty page and write my article, which has been very cathartic. I could feel my excitement and energy returning as I worked on draft after draft. I also had fun collaborating with my son on a photographic illustration. I had the image in my mind, but not the computer skills to create it. Since my son is studying digital imaging at the College of Arts and Architecture at Penn State, he is a wiz with manipulating images on the computer. He was able to take my vision and make it a reality. As soon as he finishes refining the image, I'll be ready to submit my article and photo illustration to the board.

A few months ago, the leader of my writing critique group brought in an article from the Children's Writer newsletter called "Celebrating Jewish Identity in Books." The article listed the needs of several Jewish publishers and agents, which inspired me to resuscitate a story I had written years ago called "Rivkah and the Mice." Back in 2004, Rivkah won a writing contest for Best Picture Book. Part of the award was the chance for four editors, two from Jewish publishers and two from mainstream publishers, to review my manuscript and dummy for publication. I had such high hopes! But Rivkah received only rejections and she was relegated to the back of my basement. I was so disappointed that Rivkah may never become a full-color picture book for children. But now I'm hopeful again and I've had fun revisiting Rivkah and all the colorful characters in her village. Even if Rivkah receives rejections again, revisiting her has revived my hopeful, creative nature.

So, to recap: reviving Lichora and revisiting Rivkah has resuscitated my drive and reminded me of who I really am. How's that for alliteration?
Enhanced by Zemanta

Saturday, August 20, 2011

Water Aerobics Saved My Life!

An aqua aerobics class.Image via WikipediaThere is nothing better for fibromyalgia than a water aerobics class outdoors on a sunny summer day! During the long New England winter, the pool at my health club is covered with a bubble that traps in the heat, humidity and chlorine fumes! All the gray-haired ladies and I wait anxiously from Labor Day at the beginning of September until Memorial Day at the end of May for that @#$!! bubble to come down. It has been a glorious summer for outdoor water aerobics this year and I'm trying to get in every last day that I can. All too soon, that bubble will go up and we'll have to suffer through another claustrophobic winter. Of course, water aerobics under the bubble is better than no water aerobics at all, but there is no comparison to exercising in the pool outside in the warm weather.

Ruins of Tulum, Mexico, 0408Image by kaysha via FlickrWhen I was first diagnosed with FM, I went to see one of the top docs for fibromyalgia, Dr. Don Goldenberg. He told me that in order to feel better I had to exercise. I couldn't even imagine exercising since I could barely walk around the block without collapsing on the couch. Dr. Goldenberg told me to try water aerobics because the buoyancy of the water takes the pressure off sore joints and muscles. It took awhile to find the right facility, I've been doing water aerobics in one form or another ever since. I started out in the Nifty Fifty class (well before I was 50), which took things pretty slow. But I built up my strength and my endurance and now that I'm over 50 I'm in a very vigorous aqua fitness class that is actually quite challenging. At 40 I could barely walk around the block and at 50 I could climb the ruins at Tulum, Mexico. Exercise, specifically water aerobics, played a big part in my recovery.

Water aerobics literally saved my life and gave me back a semblance of normalcy. A few years ago I saw Dr. Goldenberg for the last time, and he told me - whatever you do, don't stop the water aerobics. I took his advice to heart and I've kept going three times a week - bubble or not! It makes a huge difference in my life and I make it a priority, even on the bad days.

Enhanced by Zemanta

Sunday, August 14, 2011

Thyroid Resistance Syndrome

If your thyroid levels are considered normal or on the low end of normal, but symptoms of an underactive thyroid, or hypothyroidism, are still present then Thyroid Resistance Syndrome (TRS) may be a factor. Mainstream medicine does not typically treat TRS, but doctors who treat patients with FMS know that a shot of T3, the active form of thyroid hormone, helps to relieve some resistant FM/hypothyroid symptoms such as fatigue, weight gain, cold hands and feet, constipation and bloating. At my last follow up appointment at the Rothfeld Center, my doctor suggested that TRS could be the reason that the scale has not responded to the cleanse and the detox regimen I've been following.

Sometimes I wonder if I even have a metabolism! It seems like I have to "diet" just to maintain my weight, and no matter what I do, the pounds will not come off. Dr. Rothfeld said that even though I'm already being treated for hypothyroidism, my internal furnace is not burning hot enough and may need a boost of T3 along with the T4 that I'm already taking. He asked me to take my temperature three times a day for three days to determine where to begin. I started yesterday and upon awakening, the time of the lowest body temperature, my temperature was at 97.6 - a full point below the normal 98.6!

Here's more information from the Rothfeld Center about Thyroid Resistance Syndrome:
The thyroid gland, at the base of the neck, is one of the body's largest endocrine glands, which secrete hormones into the bloodstream. The thyroid's main function is to regulate the body's metabolic "furnace" and a malfunctioning thyroid affects temperature control, weight control and the conversion of food into energy. The thyroid mainly makes the thyroid hormone T4 which is largely inactive. The production of T4 is controlled by stimulation from the pituitary hormone TSH (thyroid stimulating hormone).T4 then travels to individual cells where it is converted to the active form T3, which then travels to the mitochondria or the furnace of the cells that control metabolism.

When TSH levels go above a certain level (around 5.5) the thyroid is considered underfunctioning by conventional medicine. That's when thyroid replacement is given, mostly in the form of synthetic T4. However, there is considerable evidence that blood tests fail to detect most cases of underactive thyroid. Some people have "tissue resistance" to thryroid hormone. In other words, T4 is being produced at normal levels but it is not being converted to T3 at the cellular level. Instead, T4 can convert to a blocking hormone called reverse T3 which can slow the metabolism. Patients experience symptoms of low thyroid but are considered normal because their TSH is normal. lists these symptoms of low thyroid:
The classic signs of a sluggish thyroid gland include weight gain, lethargy, poor quality hair and nails, hair loss, dry skin, fatigue, cold hands and feet, and constipation – and these symptoms are relatively well known.
However, some of the conditions you might not associate with your thyroid include:
  • High cholesterol
  • Irregular menstruation
  • Low libido
  • Infertility
  • Gum disease
  • Fluid retention
  • Skin conditions such as acne and exzema
  • Memory problems
  • Poor stamina
Enhanced by Zemanta

Wednesday, August 3, 2011

5 Month Wait List for Top Fibro Doc

By the numbers, this has been an auspicious week so far. Five: the number of months I waited to see Dr. John Bordiuk at the Marino Center for Integrative Health. I finally had my appointment on Tuesday, August 2. Seven: the number of months I was on blood thinners due to blood clots in my lungs. I finally got off Coumadin on Monday, August 1 - yay! Ten: the number of students in my creative writing class for kids in fourth to sixth grade which started on Monday, August 1. I usually get mostly girls but this time I have five boys and five girls - a full class. It's been fun to see what their imaginations dream up!

Last winter when I was really in a deep, dark hole, I asked the Massachusetts CFIDS/ME and FM Association for FM doctor referrals. The top doc on their list was Dr. John Bordiuk, but they warned me that he had a long waiting list. I called his office in March and was told that he was booking new patients in July but when I finally got an appointment, it was for the beginning of August! As the start of my creative writing class approached I realized that it would be a long, tiring day for me to see Dr. Bordiuk on the same day as my class. So, I called his office to reschedule and was told that I would be put at the bottom of the list and wouldn't be able to get in to see him until January! I didn't know whether to be upset that I would have to wait another five months or be glad that he's so good that he is in such high demand. In the end, I kept my original appointment and saw Dr. Bordiuk this week.

I was surprised that he didn't ask me to fill out paperwork ahead of time for health history and a list of supplements and meds. I did the list anyway because I was sure he would want to know what I'm currently taking. When I checked in at the Marino Center, I asked if I needed to fill anything out and the receptionist said that they were all set. To be fair, my rheumatologist is also at the Marino Center and Dr. Bordiuk did have some background information on me from previous records. He knew that I was coming to see him for fibromyalgia and that I had recently had bi-lateral lung embolisms. He was very kind and patient as I told him my whole sob story. He asked if anyone had ever done a stool sample to test for yeast - a common gut problem in fibro that can cause a whole host of symptoms - and he was surprised when I said no. He was also surprised that no one had ever tested me for food sensitivities. Although I've done many special diets and cleanses to combat fibro that usually consist of no sugar, no dairy, no wheat, no alcohol, no chocolate, no caffiene, etc., I've never actually been tested to see what foods may be specific triggers for me.

The food sensitivity test was easy - a blood test to look for antibodies in reaction to over 180 different kinds of foods. The stool test means I have to poop in a cup and collect samples from different parts of the "specimen" and put it in a tube. Kinda nasty but I'll do it if I have to. Anything in the name of better health, right? Results will be back two weeks after I send back the samples. I'll keep you posted!