My New Life

No, I didn't trade in the old life. But I definitely have a new life. This is going to take some time, since I am a thorough person.....

It started in October or November last year when my sister, Aimee, called to tell me something. She'd been to LA to see a specialist (Please, NOT cancer--we have a bad track record with that!). Aimee has fibromyalgia. My Mom does too. It's genetic. She thought I should read this book she has. I'd always thought of fibromyalgia as the women's equivalent of ADHD--something the doctors would tell you when you needed a diagnosis and they didn't know what was wrong with you. After all, my Mom had never had any testing for fibromyalgia. ....Because there ISN'T a test FOR fibromyalgia. You take a lot of tests to rule OUT other things. I had another friend who'd been diagnosed a few months before Aimee, and I'd considered that I might have it too, but I was comfortable occupying my little corner of the planet Denial.

Once Aimee told me that it was genetic, I couldn't occupy Denial any longer. I had to get out my Mom MD and do some research, and I diagnosed myself. When I went to my doctor for my physical about 2 weeks later, I told her what I suspected. She wasn't so sure. She did LOTS of tests for other things--hormones, lupus, and other stuff. All of that was as expected. When she did the "poke test" I hurt in 11 of the 18 places, but I wasn't jumping off the table in pain, so she was reluctant to make a diagnosis. She did prescribe a "happy pill" though to help me with depression, anxiety, apathy, and pain. Hey, it does help me sleep a little better at night and I didn't freak out during our move, so it's helping something.

What is this hideous disease? I am still learning how to describe it. There's something wrong with my kidneys that doesn't allow the phosphates in my body to be excreted normally. So these phosphates build up all over my body in these painful lumps and bumps. Calcium, which we need for the production of ATP--for energy--must bind with phosphates first, so that leaves me tired all the time. Fibromyalgia is a disease with a LONG list of complaints that are seemingly unrelated, and not all doctors believe it's a real condition. It's cyclical in nature, and you don't experience all of the symptoms at the same time--when 1 problem goes away, it gets replaced by a new complaint. And eventually you feel like a freak, because there's always something wrong. Here are some of the possible complaints: FATIGUE, pain all over the body--different places at different times, numbness/tingling in extremities, depression/apathy/anxiety, skin problems, bladder problems, IBS symptoms, memory and concentration problems, headaches, weird tastes in the mouth, and the list DOES go on.......

But the GOOD news is that there is HOPE! Aimee found an endocrinologist in Marina Del Rey who specializes in fibromyalgia, and he has discovered a very SIMPLE treatment--guaifenesin. Yes, that's the main ingredient in Mucinex and many cough medicines. It's fairly inexpensive, and basically has no side effects. However, in order for the guai to work (and not be "blocked"), you have to change your lifestyle a bit. No more salicates. No more plant oils, extracts, or barks. No more aloe. No more mint. Most of the things that you have to eliminate are the things that come into contact with your skin--so you re-vamp your supply of hair products, deoderant, lotion, lip stuff, make-up and skin care, razors and shaving stuff, toothpaste, and topical medications. You learn to read labels and look for the salicates. It's really not that hard. And then you start taking the medication until you feel worse. Yes, you get worse before you get better.

I figure I've had fibro since I was a kid. I had skin problems, growing pains, and headaches all the time. Then it took a break until I was a senior in high school. Then I got mono, and life has never been the same. The good times were shorter and the bad times were more numerous, and that cycle has repeated itself for more than 20 years. And the guai reverses stuff about 6 times faster than you experienced it. So you hurt more and are MORE tired than before. And eventually my good days will increase until there are more of them than the bad ones. In time I will be in a "remission" of sorts. So there IS light at the end of the tunnel! There's a GREAT website that explains all of this much better than I have--it's totally worth the research time. There's also a GREAT book that my sister loaned me:



I'm in the "fun" part of the cycle. I'm still learning how to live my new life and what I need to avoid. I'm LOVING the fatigue and pain and insomnia and....... Ok, not really, but I keep reminding myself that it will be better. And I LOVE my new doctor. Dr. St. Amand knows what he's doing--because he's living with the disease too. Not only is his specialty endocrinology, but he's living proof that life can return to "normal" again. At the first visit, he takes a medical history and then "maps" all of your lumps and bumps. At follow-up appointments, he does another body map and then compares them. If the meds are working, your lumps and bumps will get smaller, break up, get softer, and disappear. I'm looking forward to this next appointment, because I want to see some improvement.

I have given myself permission to not do as much right now. I try to rest when my body demands it (all too often). I am not going to volunteer to be a room mom this year at school. I'll work in Toph's room, because I need to see him in action, but I'm not going to volunteer as much as I did last year. I'm going to focus on getting healthy. And by next year, I'm going to feel lots better. Until that happens, I'm going to repeat my motto often: My resurrected body is going to totally ROCK! It's NEVER dull around here!