Archive for the ‘The Sin Eater: My Life With Fibromyalgia’ Category

The Sin Eater # 3: Lose It!

By Susan on August 17, 2009 | Category: The Sin Eater: My Life With Fibromyalgia,Touching An American Sky | Tags: , | No Comments

 a-ok
Now Playing: Sheyrl Crow : Detours
Topic: Health

Hey all,

If you don't have health insurance and/or your weight loss/nutrition program isn't working, take a look at Lose It!, an iPhone app dedicated to helping people lose weight. Though its always better to have a medically supervised program, many people don't have that luxury and end up relying on fad diets that tell them to completely cut out essential parts of a balanced diet for the sake of losing weight, thus putting the user at risk of starting and quitting several diets over the course of their lives.

Lose It! isn't like this, and though eating a good diet is obviously much better than continuing down a destructive path, the program allows users to choose their own diet as long as it falls within the perimeter of a chosen calorie-to-weightloss expectation set up when you download the app. Lose It! Is all about portion control and exercise, and through using it, many reviewers of the application on iTunes seem to say the same thing: the program eventually becomes like a game. The more exercise you do, the more you are able eat, and Lose It! actively encourages physical activity of every kind, from walking around the house to sports such as badminton, aerobics, running and swimming. Additionally, it becomes impossible to eat one meal that packs a wallop: a 1,500 calorie breakfast that takes up most of my 1,726 calorie day is now out of the question, and I have to spread out the calories across the day so I can have enough energy througout the day. This both encourages portion control and also forces me to take stock of what I'm actually eating, which makes for a self-edited diet I can actually enjoy while still taking off the weight I gained when I first attempted to get a handle on my pain and subsequent weight gain.

For those of you who do not have an iPhone and cannot afford either a fancy phone or a medically recommended nutrition program, I recommend taking a look at  the various programs offered through Version Tracker or else on Amazon. You should be able to find a comparable diet and exercise program.

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The Sin-Eater #2: Miranda Esmonde-White – Classical Stretch

By Susan on May 30, 2009 | Category: The Sin Eater: My Life With Fibromyalgia,Touching An American Sky | Tags: , , , | No Comments

 bright
Now Playing: Steve Earle: The Revolution Starts Now
Topic: Health

Hi everyone!

For the past couple of weeks I've been busy wrapping up various jobs before I take a month off from bookkeeping and filing bankruptcies for people. I have 2 screenplays to finish, as well as my childhood memoir to start, and I made the decision a while back to take some time off from the financial world in order to concentrate on the kind of work I am hoping will one day pay ALL of my bills. Sure, I love bridging the gap between artists and the money people, but I need to take the time to work on my own art for a little while.

Between work and the funerals, births, weddings and other rites of life I've attended to (or missed, sadly) over the past four months, I've not taken a lot of time to manage my health condition, but am now in a good position to get my relationship to fibromyalgia and my sleep disorder better understood and under control.

 

For today's segment, which is brief, I will tell you right now that exercise — even light exercise — can be a lifesaver to a person suffering from fibromyalgia. Of course you should consult your doctor before beginning any exercise program, and if you do not have a doctor, you should do a check-in with yourself to determine your needs.

Some of you have access to a good swimming pool, which can be excellent for fibro patients (at least according to my doctors), but for those of us who do not have ready access to such a luxury, and who are only just now getting our lives back on track from a past injury that allowed fibromyalgia to "take over" our bodies, any exercise can be an uphill battle, especially if we have to work full time and/or take care of a family as well. 

As luck would have it, one day while I was flipping through the channels on our DVR, I ran across Miranda Esmonde-White's EXCELLENT program, Classical Stretch. This is a 22 minute stretching program that airs in the morning on PBS, which makes it available even to those without cable television. If you can't catch her show or record the episodes (or if you want longer workouts), she also offers DVDs for sale.

Miranda, who spent several years as a professional ballet dancer, combines basic ballet moves, Tai-Chi, yoga, and traditional Western stretch techniques, and this makes for the kind of exercise routine that both invigorates the body and mind as well as helps with balance, confidence, and overall health. A combination of meditation and low-impact aerobic exercise, her program has been a lifesaver for me as I get my health back on track, and I found it to be both a good augmentation to my physical therapy as well as pleasant "pick me up" before or after a long day's work.

Some cities around the world also offer classes by her trained instructors (if you're not the type to use workout tapes), and her style is steadily picking up steam as people from all walks of life with all kinds of health problems attest to how her program has helped them get through the pain. For more information, I suggest going to her website or else doing a search for her name or the name of her program in conjunction with your city or town. Also, if there are no instructors in your area (and you feel motivated and can make the time) why not become an instructor yourself? The world needs good fitness instructors. :-)

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The Sin-Eater #1: Fibromyalgia

By Susan on May 16, 2009 | Category: The Sin Eater: My Life With Fibromyalgia,Touching An American Sky | Tags: , | No Comments

 don’t ask
Now Playing: Neko Case : Never Turn Your Back On Mother Earth
Topic: Health

disclaimer: this is my own personal story about my dealings with my fibromyalgia. your own disorder and results may differ. this is my story and my opinion. i am not a doctor, but i think that by telling personal stories, others can find comfort and hope. if you have fibromyalgia or are dissatisfied by your treatment, seek help from a medical professional. this blog is intended for mulling and entertainment only, and i do not have all of the answers, only my own trials and tribulations to relate.

 

D I A G N O S I S

Being disgnosed with fibromyalgia recently was actually a relief to me. Having had the same bizarre, seemingly unexplainable (excepting by stress) symptoms for nearly 20 years, I'm happy to know that what I've got has a name. However, the downer to all of this is not only the newness of the diagnosis in medical history, but the fact that some pyhsicians seem to turn their nose up at it as if they've discovered it all already, and that it's nothing but a garbage diagnosis that's underscoring a larger problem, if there is indeed one at all.

Let me tell you people something: it's as real as the sense you're using to read this blog. It's as real as a broken arm, a broken heart, a stubbed toe, a headache. Though fibromyalgia may come from different causes (see this excellent Wikipedia article on the subject), it's 100% real, and I truly believe it requires both the patient and the physician to work closely together to figure out the root cause of the patient's specific form of fibromyalgia, and that only when this is done, the real treatment can begin.

There is supposedly no known cure for fibromyalgia, but rest assured, there are ways to reverse some of the side effects. I'm no doctor, and what I have to say over the course of my new blog entries might not work for everyone — you should not try what I'm doing with no supervision, but rather consult your personal physician, as your problems may differ from my own –but what I want to put forth as part of this blog is my own attempt to negotiate my disorder and hopefully find long term relief without having to take arse-loads of drugs consistently for the rest of my life, even as I've had to use them as a means to get me to the next step.

 

D R U G S    A N D   C O N T R O V E R S I E S

In addition to fibromyalgia, I also have excessive sleepiness. My family has a history of cataplexy and manic-depression, among other things, making a diagnosis and treatment even more difficult. For my symptoms I have been given hydrocodone and modafinil, and on occasion (for muscle spasms) I take flexeral. Though I have tried a variety of SSRIs, MAOIs and triphasic drugs, I've found that the three simple drugs mentioned at the top of this paragraph are far more effective than all the fancy new acryonyms combined. The anti-depressant formulas universally and inevitably aggrevate my anxiety and stress (which contributed to the fibromyalgia in the first place), and I find that side effect to be much more dangerous than I do being a little bit "high" for 10 minutes in the morning when the hydracodone takes effect. I absolutely hated it when my doctors thought they were doing me a favor by prescribing me Cymbalta, Skelaxin, Nortriptyline, and all those other complicated formulas. Why they thought that replacing a slight acetaminophen risk with drugs that cause me severe anxiety, lack of care for personal hygine and the shits is beyond me, but there you have it. As I understand currently, there is a fight between the FDA and a doctor on a liver consulting board over the acetaminophen issue, but seriously, folks, my point is this: if I have to trade being careful with my acetaminophen intake with the joys of blinding suicidal craziness, I'll choose the slight liver risk and just drink more fluids throughout the day. Please, for crying out loud, if you want to ACTUALLY save lives, don't take these kind of inexpensive, life-saving acetaminophen products off the market. How many suicides or other terrible social ills are caused by antidepressants (TWO of my closest friends have shot and killed themselves while on the wrong antidepressants), and how many deaths are caused by acetaminophen overdose each year? I think the statistics may be closer together than you think.

 

A C E T A M I N O P H E N    B L U E S

I fear that if good, inexpensive and reliable prescription and OTC medications are taken off hte market, abuse of other over-the-counter and prescription drugs (which is what the FDA is supposedly trying to stop) may be come more prevalent. If we have no access to hydrocodone and other inexpensive methods of treatment, I'd say it's far more likely that patients WILL eat a ton of aspirin, Tylenol, or other drugs, or else overdose on antidepressants, or turn to other means to lessen the pain, some of which are FAR less desirable than taking an extra vicodin from time to time when the pain is too much. Who is served by the removal of quality, inexpensive means of relieving pain in exchange for the release of new drugs? Drug companies? It's certainly not me or any other patient on a limited budget, that's for sure.

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