Living with Fibromyalgia (Part 1)

Today’s topic is somewhat serious. Most people know someone who has been diagnosed with ‘fibromyalgia,’ including me. The diagnosis is applied to an odd array of symptoms that include chronic, constant muscle pain, insomnia, irritable bowel, and a cornucopia of other symptoms that on any given day range from annoying to debilitating. I occasionally reflect on the methodology used for the diagnosis and get really annoyed. Fibro is a ‘rule-out’ diagnosis, and some things don’t get ruled out, or did not in my case. I suffered for several years at a level that was completely unnecessary because of it. Physicians have differing reactions to both the symptoms and the diagnosis. Some do not believe it exists, others use it as a garbage can term for things that aren’t easily diagnosed and don’t seem to be life-threatening. Once diagnosed, everything gets attributed to the fibro unless you are really ill, which gets frustrating and can threaten your health.

For the uninitiated, the ‘rule-out’ process entails tests for the big-hitters of the primary symptoms of fatigue, wide-spread muscular pain and a loss of mental acuity. It usually comes on rather suddenly and after a week, one begins to notice that the ’bug’ remains. In my case I went to the MD after about 8 weeks of it. Diagnosis took a month. The good news was that it was not lupus, rheumatoid arthritis, Epstein-Barr/mono, hidden infection, hemachromatosis, or multiple sclerosis. Whew! Nice not to have any of those, but that seemed to lead to “Congrats, you have fibro. Here are some pills to deal with the pain and some ritalin for your brain. Have a nice life.”

In the decade since my diagnosis, I have discovered some odd things that were not ruled out were the simple causes of some of the symptoms. This has helped either me or other sufferers I know. The first was help I inadvertently gave a fellow sufferer, whom I’ll call Sherri. She is a wonderful, vibrant person who is a whiz with native desert plants, which was how I met her. She had to quit her life’s work in the native plant nursery business due to her worsening fibromyalgia. She later worked for me in a part-time position that was near her passion, but not quite. I was struggling with a specific fibro treatment that provided some relief, but was onerous in practice. Part of the treatment was to avoid any substances that introduce a class of chemicals called ‘salicylates’ into your body. That’s incredibly challenging. Today, virtually every plant makes them and most soaps, shampoos, lotions, etc. have the extracts in them. Fruit is OK, but leaves, stems and roots or the extracts from them must be avoided. Sherri and I discussed the treatment and she had an idea: she was very allergic to aspirin, the salicylate ‘salicylic acid’. Could she be so allergic that her contact with her beloved plants and botanical body products were the culprit? Her experiment at avoiding the offending class of chemicals was a huge success. She transformed in a few weeks. She still had some lingering health problems, but was pretty sure she did not have fibromyalgia – whatever that is.

I, too have had some ah-ha’s that have significantly reduced the pain I experience on a daily basis. Most recently was an experience akin to Sherri’s. I had long known I am allergic to chili peppers. One rally good enchilada and I am rewarded with 8 hours of excruciating gastrointestinal distress and 3 days of flu-like symptoms. I have mentioned this to every MD I have seen for the last 20 years. Not one of them every reacted in any way other than to write it down on my record jacket. About 8 weeks ago, I looked up ‘chili allergy’ on Google and started surfing. There is no such thing, BUT there are people who are missing the enzyme to process ‘solanine’ a somewhat poisonous alkaloid (chemical) that occurs naturally in members of the nightshade family. You think that is somewhat obscure? Nightshades make up about 25% of the American diet: tomatoes, potatoes, all forms of peppers (red, black, yellow, chili, etc.), eggplant and tomatillos being the most frequently encountered. So I stopped eating any of them. Within 5 days my need for pain medication diminished by about 30%. What is with the medical establishment that something this simple was so elusive?

Another step-function decrease in my fibro pain resulted after reading a book about the anti-inflammation zone by Dr Barry Sears. I’ve long since given it away, but the bottom line is that the oils we use in our foods are not created equal. In some people, some of them actually create chemicals in our bodies that cause high levels of inflammation, which can lead to widespread pain. To reduce the inflammation, many types of oil need to be gone from our lives. No more corn oil, crisco, etc. Strict adherence to olive and canola oils with an occasional pinch of peanut oil or butter will make a huge difference. When in combination with a healthy daily dose of pharmaceutical grade omega 3 fish oil, there went another 20% of the pain meds. If you are somewhat serious about looking into this, you need to read his book to do it right.

Remember reading about RICKETS way back in school? It's also known a vitamin D deficiency. Well, apparently it is more common these days -- not full blown, but subtle borderline deficiency in office workers and others who only see the sun on weekends. If you are having odd pain in your limbs, get your vitamin D level checked. Mine was extremely low. I now take one 50,000 unit vitamin D a month and there went another 5% of my pain meds!

More next time on how I survive the pain of travel, and gentle was of getting sleep despite the insomnia that comes with fibro.

My Simply Perfect Saturday Morning

This morning was just right! I slept a little later than usual. My husband let the big, goofy golden retriever out and made coffee while I dozed. I loved not being awakened by a cold, wet nose in my face, regardless the associated affection! We drank yummy coffee out of my favorite mugs – from the old Sante Fe railroad Mimbreno pattern, a reminder of the days of luxurious dining on exotic rail travels to the mysterious and spiritual southwestern US. (How I love eBay – I can find things that no shop within 500 miles carries without leaving home!) The morning was unusually cool for June in the high desert. We opened the doors and let the cool air envelop us, making the warm coffee even better!

I puttered for a while, mostly reading the paper and folding laundry. Then I tackled the task of the morning: a loaf of bread. I make two types: breakfast bread and regular bread. Breakfast bread has ingredients that constitute the best array of amino acids and beneficial fats and carbs possible without adding meat or engineered chemicals. Today was regular bread, which we consume on occasions other than running off to the office with a hunk of peanut-butter-slathered breakfast bread in tow.

After prepping the zojirushi, I started grinding the grain. I use a small ‘back to basics’ grain mill. It makes adequate flour for bread and doesn’t take up my entire kitchen counter. I buy bulk rye grain locally and 25 lb bags of wheat from survivalacres.com, primarily because their shipping costs are low enough that it brings the cost of white wheat within reason. Grinding a cup of each give about 3 cups of flour and a moderate workout for your biceps and triceps. I toss in a cup of King Arthur unbleached bread flour for texture and break out the Bob’s Red Mill items. A tablespoon of vital wheat gluten per cup of home-ground flour adds protein and helps keep the bread elastic – neither of us are gluten sensitive. Then some oat bran for health. Other dry ingredients include salt and dry milk. The dry milk in the right proportion interacts with the yeast, salt and gluten to keep the yeast’s carbon dioxide bubbles small and uniform.

In the interim, I warm the water and add olive oil (usually Colavita because it is locally available and has a fresh flavor), cold pressed coconut oil (http://www.organicfacts.net/organic-oils/) and Harry’s Hillsboro Honey, a New Mexico organic product that is just delicious and shines through despite being a small part of the process.

All goes into the machine in the prescribed order and I top it with Red Star yeast – not the rapid stuff, but I do add a pinch more to make up for using the quick bread setting on the machine. I set it on ROCK AND ROLL and head off to write this blog entry. Today is cool and dry, so in checking the bread during kneading, it needed another couple of tablespoons of water to make up for the ingredients being unusually dry. Should anyone read this and want the recipes, add a comment requesting them and I'll happily post.

I can already smell the toasty goodness as I head off to shower before visiting friends in the hospital.

It’s the simple things

Lately I ve been trying to slow my life down and appreciate what I have. I’ve never been a wild and wacky chick, but something about the increasing uncertainty of the oil spill, the economy, getting older, whatever, has sent me moving toward the basics. In addition to making my own bread and, more recently, grinding my own grain, I’ve taken an interest in the fiber arts. I tried knitting years ago, but I have a very tight hand, so by the time I was 10 rows into a piece, the loops were so tight on my needle that I couldn’t pry them open to make row 11. I have found that crocheting does not pose the same problem.

Armed with a website, a hook and yarn from WALMART and some semi-interesting TV shows, I made a warm but hideously ugly hat late this winter. I love it because I made it by myself. No pattern, either – mostly because I can’t read them yet. I find crocheting highly versatile and ninny-proof, which I require. I used the Red-heart yarn, which was also very forgiving and another plus from my buds at Walmart. So why drone on?

Of course, following my previous pattern (see blog below on bread), making the garment isn’t enough. Again, researching the web, I found sites on spinning your own yarn. How did anyone ever figure this stuff out? There are a zillion steps to get from sheep to needle! Happenstance sent me to a local farmers market during a fiber arts celebration. Several people had spinning wheels -- but that takes some talent and investment, for neither of which was I prepared. I did find a wonderful lady with drop spindles and wool that had been cleaned and carded. That was up my alley – drop spindles can be used to develop some of the hand-eye coordination required to graduate to a spinning wheel.

I digress – I almost bought a fleece so that I could start this process from the immediate post-sheep phase. After seeing and doing the spinning part, I believe I will postpone that part of my skill-building. I am not yet that patient, and the skirting, washing and carding seem to require even more of that precious substance than the spinning. They also require enough attention that mind-numbing television does not enter the equation.

Within a few tries in the privacy of my own home, I was making YARN from the wool and drop spindle I purchased!! How cool is that? I have not yet tried to use the yarn with my beautiful metallic pink WALMART crochet hook. I am confident when the time comes, I can make myself an even lovelier hat with my own yarn. Maybe someday my hats will be as delicious as my bread!

Four Seasons of the High Desert (part 2)

IT’S OFFICIAL!! It is now Hell-hot!! The official temp was over 100 F yesterday, hailing the beginning of season. Fortunately, it is the shortest of the desert seasons here – usually lasting between a month and six weeks. During this time, we have the benefits of drying vegetation, thirsty birds and animals, and our favorite– full-on fire season! We’ve had a few small fires in the area lately. A few ranges away there is one that has been going for 10 days or so and may not be ‘out’ until the summer rains start. That’s the Monsoon Season for the uninitiated. The monsoons, climatically a correct nomenclature, are what end the Hell-hot season. The monsoons in the southwestern US are not as voluminous as those on the Indian subcontinent. They may have been in the distant past, but that pesky Central American land bridge reduced the dynamics that lead us to today’s piker of a monsoon, comparatively. Those of us who benefit from these mini- monsoons are unlikely to look this gift horse in the choppers.

The monsoons are like nothing I had experienced before moving here, and I’ve lived in most of the major sub-sections of the US. Other than the incredible beauty of the Keweenaw Peninsula of Michigan, the monsoonal southwestern US is the most spectacularly wonderful place to be in the states. First, we get rain – and a fair amount. More than 50% of our 10 to 30 inches of rain, elevation dependant, is delivered by the monsoons. Second, then temps are moderated to an amazing degree – gone are the triple digit numbers, banished until the following May or June if the season goes per ‘normal.’ Third, the environment comes ALIVE. Flowers bloom, fawns are born, grass grows green, brooks babble – some yell, hence the local stupid motorist laws (more on that below).

The lead-up to the monsoons ( sometimes called ‘dry monsoon’) is not only HOT, but the humidity rises each day, starting at single to low double digits in late May to a dew point of 55 degrees. Nothing quite as pleasant as really hot AND humid -- that's why I left the southeast US! When the dewpoint has been above 55 degrees for 3 consecutive days, the WET Monsoon has begun. WHEW!!

A couple of years ago, there was a move to make the monsoons more ‘out-lander friendly’ and dates, rather than climatic conditions, became the ‘season.’ Can you believed that the ‘powers-that-be’ even dumbed-down the monsoon?? Despite the actual conditions usually hailing the season around the 4th of July, the ‘official’ season is 15 June to 15 September. Got that, Mother Nature???

OK -- Stupid motorists, you ask? Yes, there were enough stupid people who drove their cars into furiously rushing water occupying normally dry creek beds that the cost of extricating them (if still alive) became a burden on the state. Hence if you enter a flash-flooded creek and do not become a brief entry in the annual Darwin Awards, you pay a steep fine if emergency services personnel must rescue your stupid self. I love both the concept and the common name – call stupid motorists what they are: STUPID!

This is actually a serious subject. Many roads in the southwestern US (SWUS) cross normally dry creeks, called ‘dry washes’ or ‘arroyos’ depending on the region. Despite signs warning people not to enter when flooded, lots of people, usually new to the SWUS , know better and try to cross them. It only takes about 6" of swift water for your tires to lose traction, especially if the road is paved. After that, you and your car are officially FLOTSAM. If you are fortunate, you survive. Many people every year actually DIE doing this, which is especially stupid when you consider that if they wait ONE HOUR, the water will probably be gone. Now who has to be somewhere so badly that it is worth the risk of DEATH to wait an hour? NOW you understand the stupid motorist law!

So, get your tires checked, put a couple of gallons of water and some snacks in the car, and get ready for the heat and the rain!