Sunday, August 10, 2008

Pick your poison

Wow. Comedian Bernie Mac, dead at 50. The papers say it was pneumonia. My husband said "Who dies of pneumonia anymore, especially at age 50?"

Someone who is on immune suppressants, that's who. Bernie Mac had sarcoidosis, an autoimmune disease, and it was being controlled by immune suppressants. The doctors declared his condition to be "in remission," but that remission came at the price of him not being able to fight off pneumonia.

This is frightening for those of us who have been given the choice between dying of kidney failure or having our immune suppressants squashed, leaving us vulnerable to death by pneumonia and other illnesses that would otherwise be life-threatening, were our immune systems not suppressed. What are we supposed to do? I know for a fact I would be dead if I hadn't finally given in and taken the damn prednisone. But I resisted taking it for 8 months because I read about all the side effects and those to me sounded worse than just being in pain. I didn't consider that my vital organs were being attacked.

But at age 25, I was not ready for osteoporosis, diabetes, hair loss, weight gain, mood swings, a giant moon-face, acne, cataracts, immune suppression (meaning, vulnerability to all diseases) and all the other garbage that goes along with long-term high-dose prednisone usage. In retrospect, I think there would be something wrong with me if I *didn't* find this idea objectionable! Who wants to be a fat, moody, moon-faced, blind, brittle-boned diabetic before age 30, if there is any other possible way to deal with their situation? I mean, I was still single. This is no condition to be in on the dating scene. Crap, it's just no way to go through life, especially when your condition is caused by medicine.

What are we supposed to do? Well, according to Mike Adams ("the Health Ranger")... "It's simple: Visit a naturopath, get off all the chemicals and medications, eliminate all the junk from his diet (processed foods, etc.) and transition to a mostly plant-based diet rich in superfoods and living foods. His lung condition would have disappeared and his immune system would have been strong enough to withstand common infections. (He also would have experienced increased energy and lost some excess body fat.)

This is a fine idea, in principle. But Mike Adams, I'm pretty sure, has never had to first-hand deal with either sarcoidosis or any other life-threatening chronic illness involving demoralizing chronic pain. I decided to try the naturopathic approach myself the first time i was ill, and let me tell you- when the disease is in attack mode, unless you have someone making your food for you, and coming to your house treating you, you won't have the energy to do the amount of work it takes to get better using naturopathy alone. There is a lot of shopping for fresh food, driving to appointments, food prep and cleanup. and when i was in the condition I was in in 1992, I had to spend a half-hour working up the gumption to get off the sofa to go to the bathroom.

As much as I detest being on drugs, I've found them to be a "necessary evil" for periods of time in my life. I go on the drugs to stop the disease from destroying my kidneys, lungs, heart, brain, and whatever else it may be attacking, then as soon as I start feeling a bit better, I start doing the things I know I should be doing: acupuncture, gentle exercise, eating less garbage and more real food (fruits, veggies, nuts, beans, filtered water, salmon), and doing things and being with people who make me happy. and reading plenty of comic books. The two approaches work together, and I taper off the drugs as my test results improve. I desperately want to be drug-free, but I more desperately want to have all my original vital organs intact. I am presently not on prednisone. I've never been on it for more than a year, even though my doctors would like to keep me on a "maintenance" dose. I am on cellcept right now (I was on both immune suppressants for 9 months after my last attack), and as long as my tests are OK, I figure one immune suppressant in my life is enough. It's the costlier of the 2 drugs by far, but i get to keep my bones and eyes. SO from that perspective, it's cheaper than cataract surgery and double hip adn knee replacements, both of which, of course, leave you open to staph infection...

Point being, it's our lives. If I don't want to take prednisone, I don't have to. They can't make me. If I were a child, they could probably force my parents to give it to me, but i'm not a child (at least not according to my drivers' license). However, I have to live with the consequences of my decisions, and sometimes taking prednisone for 9 months is better than being in chronic pain while lupus eats away at my vital organs.
Post a Comment