Monday, March 24, 2008


For years, I've dealt with criticism, suggestions, and insistence that I try various methods to heal my back. I have been lectured that I need to do weight lifting to help with the extraordinarily low bone density (which I did at the time I was told this). I have been told over and over that I need to do yoga or Pilates--nevermind that I have been ordered to keep my spine 100% in neutral positon at all times, no twisting or bending forward because of the very high risk of vertebral fractures. I tried to attend yoga class and had to exclude exercise after exercise. I have been able to do a fair amount of ballet, including barre work, in the past, not currently.

People have lectured me on using chiropractic, homeopathy, prayer, massage, herbs, nutrition, physical therapy, relaxation, improved ergonomics, better mattress, acupuncture, even though I used all of these modalities except acupuncture. I've been lectured on exercise and weight loss (I do exercise, and though I'm overweight (not obese), the back problems were just as bad when I was thin and at times worse). In addition, being somewhat overweight provides insurance against fractures for women with low bone density; my density has increased with my weight and my bone pain has decreased.

One woman used to just walk by and say: "acupuncture" to me, citing the new study that had come out. For muscle pain, it works. For one of my rheumatologic issues, the clinical trials show a worse outcome (at least no better) with the use of acupuncture. Plus with all the other modalities I use and specialists I must see, I really have limited time and financial resources to do more. It's the one thing I haven't tried. I do think it could give some relief, as have most of the other measures I've taken. But it's not going to be a cure.

I've also had people question me on why I didn't get surgery (not a candidate at the time, wouldn't help yet), tell me that I absolutely needed to do water aerobics (at a time when I already was doing water aerobics 2-3 times a week).

These aren't passing suggestions--I am open to suggestions that might help--but rather a dogged insistence and badgering that I'm not doing things right.

The advice is constant and unrelenting. And yesterday, when I mentioned surgery to someone, because of spinal cord compression that's causing nerve damage and is making me incontinent? Judgment, because back surgery is controversial and doesn't work. Well, becoming a quad doesn't really work for me either, not when I have a choice!

I'm tired of people's judgment that I'm at fault for a couple of genetic disorders and physical injuries that I have made every effort to heal with conservative measures. I'm tried of having to defend or explain myself. Any time I mention the back disorder (only because I can't physically do something or need to sit, etc.), people jump in with advice. There are some people, though, rare, who know others with chronic pain and who don't rush to judgment but who empathize even when I minimize ("just back pain").

Now I feel hesitant to tell others about surgery because they'll judge me for that despite spinal cord compression causing neurological damage and loss of function. Most family and close friends are more supportive, seeing how this has played out over the years.

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