Last week I had quite a bad day — or rather, I had more than one — but since I’ve begun (in earnest, rather than in lip-service) the new, fancy nutrition program recommended by a client of mine, I’ve had some progress in both the mood and stamina, though the pain has continued marching on. The pain isn’t even the most of my problems; I find it possible to negotiate it as long as I have enough energy throughout the day to feel like (and actually) accomplish something every day that’s both worthwhile and can earn me the kind of money I need to earn to satisfy both my financial needs and my health needs simultaneously.

Granted that nothing is perfect, and sometimes my body can be annoyingly inconsistent, I am happy to report that over the last several days I’ve had more good days than bad as I trade my old diet (which had once again become pretty pedestrian due to how physically depressed I felt) for such treats as Himalania goji berries, TerrAmazon “nibs” with cocoa + Brazil Nuts + ground coffee in the mix, Kaia brand pumpkin seeds, Bio-K+ Probiotics, Fage Greek and Wallaby brand yogurts, Odwalla protein shakes (which, despite the sugar, are now a part of my diet that’s making me feel better), and finally, Tulsi Chai and Windor-brand coca tea (which, for me, has been a great replacement for most caffeinated beverages). I’ve also started with more organic meats and veggies, and today, rather than gobbling down a mountain of fries with my chicken nuggets, I asked the cook behind the counter to give me steamed vegetables instead.

I’m allowed one day a week to “slack” a bit on the diet, and that’s how I went about choosing the fried nuggets and steamed vegetables for my Sunday afternoon meal; I also had what I imagine will be the last of any high-fructose corn syrup drinks for a while, as they make my teeth feel sort of fonky, but I may spring for a Freddo if I have to spend many more hours working today. (I don’t like working on Sundays, but it’s the most prudent thing for my current work and medical schedule for the next few months.) According to my nutritionist, this kind of dieting (6 days on and one day off) is to keep me — wisely — from going absolutely crazy from abstinence, a factor that can make people blow their nutrition plans. as I’m in it for the long haul, I’m willing to treat one day a week as a “drunk all night” type day, one day a week that offers me the stamina to continue my path of self-control for the other 6 days. The last time I went on a diet, I counted calories by using my iPhone’s “LoseIt!” app and lost 30 lbs, which I’ve been able to keep off consistently. It lasted for about a year and 1/2 before I met my nutritionist, a woman who reversed many of her own fibromyalgia symptoms after a period of years.

My nutritionist is one of those rare people who saw/felt her bout with fibro coming and managed to beat it back with the stick of life; over the years I managed to do the same thing when fibro-like symptoms reared their hydra-like heads, but this latest bout with it nearly crushed me (it resulted from a back injury that kept me from exercising or doing much of anything useful for a while except work), and turning to pain, sleep, and wakefulness medication and therapies has been the only way I’ve been able to wrestle with this disorder effectively.

This time around, it has been here to stay, and the fact that I’m also dealing with some severe nerve pain in my right hip (it’s been here on and off for 2 decades) has made the problem ever more annoying, as my doctors have refused to look at my hip or tell me what might be wrong with it; the only treatment I ever had was a harrowing cortisol shot that made both the hip pain and my mood about 1,000 times worse; for a while, I couldn’t walk more than a block and 1/2 without severe pain, something that NEVER happened before I was shot full of cortical steroids by what looked to me to be a methed-up jackass in a lab coat (I think they fired that guy, but I’m not entirely sure). I’m not sure if it’s an insurance thing or what, but I’ve had to seek alternative therapies in order to heal whatever the mystery pain is. They usually work (as does the Dilaudid I’m now taking, hah hah).

The good news about Dilaudid is that it 1) works faster 2) contains no acetaminophen 3) is very tiny 4) works in totality for much longer periods of time, resulting in my taking far less medication overall and 5) doesn’t make me feel loopy, warm, or weird the way the vicodin did. Because of this last observation (#5) I’ve also been able to cut back on medication for wakefulness and tiredness; it’s as if my brain and body have a new lease on life that is slowly spreading to the rest of my work and play habits; I’m grateful for its existence, and it’s been a tremendous help where other doctors and drugs failed miserably. It gives me hope that my life will one day get completely back on track, pain and neuro bullshit be damned.

Cheers to all of you, and may you all find your own versions of healing for this terrible affliction. Blessed Be and take care.

 a-ok
Topic: Health

Lately, I've been doing some research on the internet to find other people with fibromyalgia. I found a lot of garbage, but I also located some real gems, two of which I'd like to share with you today.

I found Esta's artist's website when I was up one night late due to pain and insomnia about a year ago. I was looking for inspiration, and her artwork provided me with a wealth of dreamscapes into which I could escape from my misunderstood, pain-filled life.

About a month ago, I went to her site in search of a set of cards to mail to family and friends who had attended my wedding. I wanted to thank those who had come a long way to the ceremony, or who had gotten us a nice gift, and once again, Esta's site didn't disappoint. It was during this last visit that I ran across her "Fibromyalgia: Never Heard Of It?" link, and being curious — and also feeling a bit of dread for her — I clicked the link, which led to another website.

Esta's words are both harrowing and heartening, and like myself, she is working furiously to help both herself and others suffering from this disorder. She also hopes to educate friends, family and medical practicioners, and her site is full of testimonials, herbal wisdom, and links to others.

Another site I came across recently was for The National Fibromyalgia Association, which puts out a great magazine called Fibromyalgia AWARE. I just received a sample copy in the mail, and though the editing could occasionally use a boost, the information on the pages is good, solid, and smart, and I recommend it to anyone who has fibro or who knows someone who does. If you're seeking to understand it in bite-sized chunks, this is a good resource.

 a-ok
Now Playing: Basia Bulat
Topic: Health

Over the past several months, I've read accounts of doctors and laymen who do not "believe" in fibromyalgia. To that, I must retort that there are other things people haven't believed in over time, including:

1. The Earth is round

2. We have actually landed on the Moon

3. Elvis Presley is deceased

4. We didn't believe that black people — or any woman — should be able to vote  

5. We believed that women's wombs wandered their bodies, thus explaining supposedly irrational frustration with patriarchial forces (lol).

6. We believed epilepsy was caused by demonic possession! /eyeroll

7. People believed AIDS could be given to the population by sitting on a toilet seat or handling currency.

Remember 10, or even 5 years ago, back when it was thought that Chronic Fatigue was a figment of a sufferer's imagination? Shall we take the Wayback Machine to the time of bloodletting via leeches, Greek theorizing that women's wombs wandered their bodies, or to a time when many Americans believed human slavery was acceptible?

Just because a medical professional doesn't believe in something doesn't mean it isn't real. Like a once fine cheese that has been stuck at the back of the fridge for too long, old knowledge can eventually grow moldy and unusable. A bad doctor considers him or herself to be at the top of their field, while a good doctor is always learning, studying, and looking at the latest developments. A physician who is settled in his or her ways at the expense of your health care may not be a doctor you want to stick with, as such a person is most likely not open to new research.

However, I also believe that the entirety of the burden of your care should not be placed only upon your physician. As a patient, it is your responsibility to learn about your condition, especially in the event where you are confronted by a doctor or member of the medical establishment who doesn't "believe" in what you have. You need to educate yourself so you CAN educate your doctor, and if your doctor refuses to listen, you need to know how to search for someone better. With everything available to us via the internet, friends, and modern technology, there is no reason for you to suffer unnecessarily. The more you know about your options — and how to get around red tape and think outside the box — the faster you'll heal yourself.

Cheers, blessed be, and best of luck to you all!

 d’oh
Topic: Health

Oh, Ambien! I know you work for other people, but you made me sullen and depressed, and I didn't get anything done last week as a result of your powerful compound. You were a huge drag after the second day, and I know I lost some work because of you. With this in mind, I bid you adieu and accept a new suitor into my sleep life.

Temazepam: it sounds like marzipan (yum!), but I don't have high hopes. That said, I'm going to give it a try, as I may end up being pleasantly surprised. The benzos, MAOIs, SSRIs and triphasics usually make me nuts, but I've had some success with taking valium before major medical tests or surgeries, so I'm going to suppose I have a small amount of faith in temazepam's ability to improve the quality of my sleep, as it's supposed to be similar to valium, but stronger.

Typically, I switch to a different drug every few weeks or so, as I end up developing a tolerance and become groggy and grouchy rather than wide-awake and wonderful. In an effort to find one thing that works really well, I've done some experimenting, but most sleep drugs seem to have a similar effect: they work great for a couple of weeks, then I wake up one morning at 4:30, toss and turn for a few hours, and bitch and moan my way through the day. This is something I understandably want to put a stop to. As it stands, sleeping pills aren't supposed to be taken for more than a couple of weeks at a stretch in the first place, but with what I have, I end up on on them for 4-7 nights a week for months at a time.

In working to reverse some of the more odious effects of fibromyalgia and ES, I've dutifully done my exercises several times a week (excepting last week, when getting up was tough) and I enjoy them. I've changed my diet to include less sugar, white flour, wheat gluten and the other things I've been told to avoid. My diet, which is in its 9th week, seems to be working. I've dropped about 8 pounds since I started. I'm receiving insurance-approved acupuncture for intense sciatic nerve pain, and in general do all I can to watch my moods, energy levels, and the way I interact with the world. Still, depite all of this, I'm finding that while I am happier again, I'm also sometimes EXHAUSTED by it all, especially on a day when none of my solutions work and I feel as though I'm back at square one.

I did have a ray of hope recently, however, that removed a large part of my anger and overall frustration with having the disorder in the first place. I'm assuming a lot of different people read this blog from day to day — all kinds of creeds, sexes, and races — and I'm going to venture out on a limb here and suggest something that may help those who are either suffering from nebulous chronic pain or who know someone who is: guided meditation. To some of you, this may sound silly, or perhaps you've tried it to mixed effect, or perhaps you're a member of a religion whose members frown upon the practice. I'm currently working on a post specifically about these experiences, and will post them within the next few days, as I'm still collecting my thoughts on what happened, and how to explain it for the benefit of others no matter their religious preference, if any exists at all.

 on fire
Topic: Health

There are times in my life when I wake up at 4 or 5 in the morning, unable to sleep due to the immense amount of discomfort I am in. When this happens, I get myself out of bed, take a vicodin, put on my headphones (so as to not wake up my partner) and listen to a podcast on my iPhone until the pain subsides and I can go back to sleep until it's time to wake up and start my day.

Podcasts are easy to find on iTunes and other places around the internet. There is something for everyone out there under the sun, no matter your tastes. I listen to podcasts on meditation, on spirituality/religion, or else I find some good music. In particular, I love ambient music when I'm dealing with pain. It's minimal but interesting enough to engage my fractured attention, and the combination of hearing tunes or else learning something new is comforting. It takes my mind off of where I am in the present moment, and allows me to see the bigger picture in life. 

No matter what walk of life you are from, there is something out there on the net for you. iTunes alone has thousands of podcasts dedicated to conservatives, liberals, libertarians, Christians, Hindus, Pagans, Wiccans, Muslims, aspiring comedians and those wishing for a full and complete escape from everything for just a little while. Here's a brief listing of some of what I like. Most of these are easily found on iTunes, and all can be downloaded onto any mp3 player:

All*Star Guided Meditations, Ambient Music Blog, Ariel's Meditations, ATC Pagan Information Radio, Bitch Radio, Seal Press Podcast, The College Witch, Coyote Tales, Daily Power Nap and NapSounds (great for when you need to catch up on sleep during the day, but only have 20 minutes or so), Fibromyalgia Weekly, Goddess Roundtable, Irreligiosophy, From the Edge of the Circle, Lady Brain, Lamyka's Podcast, iPod Witch, Geek Witch, Grammar Girl, A Pagan in the Threshold, Redefining W.O.M.A.N., Sounds of Ambience, The Secrets in Plain Sight, The Wigglian Way, Moonshine, and Wynifryd's Meditation Room.

 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.