Chris - Taking a Bite Out of the Wolf
(Chris decided early on to cook her wolf and run him through the juicer. She's developed sensational and satisfying nutrition solutions, generously shared in Cookin' With Chris, on our Lupus NewsLog Wolf Bytes page.)

"You have Lupus". Hmm, ok, I have had a cold, the flu, even chicken pox, but Lupus? What was that? "Ok", I answered, "what pill do I take to get rid of this?" My doctor looked at me, handed me a brochure and told me that Lupus was not "gotten rid of" and that I had a chronic condition that required medical attention for life.

You know those sledge hammers that hit cartoon characters? That is how I felt. Lupus. Actually, Systemic Lupus Erythematosus. I could barely say it, how was I going to beat this "stuff"? I was in such pain at the time, that I was glad to put a name to the problems I was having. Pain, fatigue, stiffness and my mind couldn't remember one thing from one moment to another. I was cold all the time and wasn't fun to be around. I was downright cranky. Really cranky.

I took the pills they gave me to help with the immune response and pain and prayed. After only two weeks, I noticed that I wasn't getting better. My pain was as bad as ever and I was experiencing a low fever that wouldn't go away. Little did I know that I was allergic to the medication and that this was only the beginning.

My journey was about to begin. By the end of the month, my fever was high and antibiotics were not effective. Nothing would bring the fever down, so steroids were prescribed. After a high dosage and another month, I was prescribed another immunosuppressant. I lasted another three weeks before hives set in. Hives that lasted 6 long weeks.

My doctor prescribed another immunosuppressant and this one not only didn't help, I broke out in water filled blisters. After three attempts at medications to help, my doctor decided that steroids alone should get my "body back on track". I felt great. No pain, I was working like crazy and felt like I could run faster than any car on the freeway.

Six months went by and the decision was made to start weaning me off the steroids. I felt like I had hit a stone wall at 65 MPH. All the pain came back and so did the brain dysfunction and the fatigue. I was miserable. I continued to cut the prednisone continually for the next eight years. Up and down, illness and steroids to get through it and then cut the dosage.

That is the "down time". It started out that way, but some of this actually has been a blessing. Ok, I don't like the weight gain and the thought that I might have to call Hair Club for Women in the future, but those are little things. I learned that I was striving too hard for things that didn't matter. I started looking hard at my life to see what I could change to make things better.

I learned that I had sleep apnea and that I needed a CPAP machine at night. Nothing like a good nights rest to get the bones and muscles a good start the next day. Reading everything I could get my hands on helped a lot. I learned that Lupus wasn't terminal. I could make my life more comfortable and even live into "old age". That was a relief.

The first week I was diagnosed, some misguided researcher wrote that the life expectancy of a Lupus patient was five years. Five years??? I was barely forty and I wasn't going down without a fight. Learning that diet could make or break you, whether you have Lupus or not, I learned that fresh foods and staying away from fried, fatty foods could lessen my pain.

Some good folks who were vegetarians taught me not to be afraid of vegetables. My idea of vegetables was pretty much corn on the cob or maybe broccoli. Learning how to cook again, was a new, fun experience. No more fried chicken with mashed potatoes dripping with butter and sour cream. No more late night dates with chocolate cake and heavy icing. I started liking fresh fruit for dessert, and actually found that sweets didn't taste as good anymore.

I was finally down to 40 mg of prednisone from 60 and I starting gaining weight. I gained 105 pounds in 8 months. Funny how no one advised me about diet. I searched and found that the more vegetables I ate, the carbohydrate cravings worsened. Books can be so confusing. There are calories, carbohydrates, good and bad fats, good and bad sugars, sugar free foods that are worse than eating all the bad stuff.

So many of us have made the journey, and have emerged stronger and more healthy than before. I first stopped listening to anyone but my own body. My body does not like fried foods. Fried foods made my body feel heavy and made it so hard to concentrate.

Lean in food makes you lean in body. I am still working on this one. Shopping became a game. Could I make a dinner that tasted good but didn't have all the fats and calories in it? Could I actually eat a baked potato and not go through butter and sour cream withdrawal?

Like a chess game, I stalked good health like it was a competition. I needed to eat more fruit and veggies but, seriously, can a body eat 6 carrots and several pieces of fruit in one day? More wonderful people came forward with ideas on how to get more nutrition into my body with a minimum of fuss. Juicing. Liquid food? Like V8, right?? Nope, they showed me how to take fruit and vegetables to make a really tasty concoction of health that I still use today.

When I discovered that I had prednisone induced cataract, I started juicing 6 carrots a day. Finding that I was anemic, I added beets to my juice. Celery aids in lowering blood pressure and a nice potato for potassium joined the mix. I add apples for taste and toss in yummy stuff like strawberries or cantaloupe to add spice.

If my lungs are acting up, adding fresh spinach adds a natural green to help the immune system get back on track. Discovering that garlic soup with ginger could clear up my chest congestion, surprised me every time. What, no antibiotics? I was beginning to learn.

Pills do not cure, they minimize the effects of disease. I need the disease modifying drugs to stay alive and well, but I do everything I can to keep the medications to a minimum. My prescribed medications are only part of my arsenal. I use vitamins and minerals, EPA fish oils, and glucosamine sulfate because I have experimented and learned what is right for me.

Not listening to others enabled me to find my own path and use only what helps and eliminate what makes me worse. Like dairy. My body does not like anything dairy except yogurt. I use yogurt to calm my mouth thrush and use it as a "sweet" thing when I just crave something naughty.

Cooking with Lupus is never an easy propostition. But it can be really fun. You, pitted again hard steel and fresh vegetables - where else can you have this much fun?? Come and see food and fun come together in harmony and tasty concoctions. At Lupus NewsLog Wolf Bytes, I'm sharing my recipes that I use on a regular basis. Low fat, but full in flavor. Whole grains, fresh vegetables and lots of laughter. It's a receipe that everybody can enjoy.

I love life. Period. I am still the irreverent crazy person I was eight years ago, just a little more wary, but still just as wacky. I still work full time and sometimes forget that 40 hours is enough. The craving for chocolate has not gone away, but I have mastered it. I don't buy any, so I can't eat it! Laugh EVERY day. Even if it is a little chuckle - do it. Life is way too serious.

God has been a big part of my life, as has been my husband. God gave him to me to keep me humble and be my ardent supporter. Someone to lean on is a great help. You don't have to keep any burden alone. Sharing lightens the load. Join a support group and get moving.

Walking is free. You don't have to walk a marathon. Park your car two spaces further away from the store. Then three, and so on. It helps. I have lost 75 of the 102 I originally gained and have cut my prednisone level to 10 mg a day. I walk more and smell the roses as often as I can. I love to feed the ducks and just sit and watch the water on the little lake we have near where I live.

I am a Lupus survivor and I will continue to do so. Do I have bad days??? Yep. Do I let them pull me down? Sometimes, gosh - I am human, too. I just don't stay down too long anymore. There are always more roses to smell and ducks that are hungry.

©2004 Chris Cox
Diagnosed 9 years
E-mail
- posted by Shar @ 3/17/2004