- Diseases, Disorders & Conditions
Lupus - My Story and Changes I Made
Something to Smile About
Systemic Lupus Erythematosus -My Story
I have lived with systemic lupus and all the numerous diseases associated with lupus for the past 40 years. I remember going to the doctor when I was 21 years of age with the onset of asthma and asking him “Is it possible to be allergic to the sun?” Every time I was in the sun I would break our in a red uncomfortable rash, especially on my nose and cheeks which is called a “butterfly rash” and one of the few criteria that is absolutely unique to lupus. The doctor never answered my question. I was treated with many different drugs for asthma which included prednisone. I did not get a lupus diagnosis for another 17 years. I have battled fatigue constantly, pain and anemia, although I had a total hysterectomy. I was in a type of medical remission occasionally which meant taking 5 mg daily of prednisone daily blunted the effects of the disease. Eventually lupus attacked my kidneys
To complete my medical picture, I have osteoarthritis, Sjogren’s disease, fibromyalgia, chronic sinusitis, and have recently developed asthmatic bronchitis. I previously had asthma and Bell’s Palsy. I take a huge number of medications. I have had 14 surgeries and I can’t even remember how many types of medical tests. Having said all that, I probably live a better quality of life today than I did 10 years ago. When I was first diagnosed the prognosis was poor with an expected ten more years of life.
What is Lupus?
Systemic Lupus Erythematosus is a systemic disease of the immune system. It is an autoimmune disease that may be acute or chronic. The body’s tissues are attacked by its own immune system. There are two types of lupus; Discoid lupus affecting just the skin and Systemic lupus affecting any part of your body it chooses.
Lupus tends to run in the females of families, although it is not considered hereditary. Since I study genealogy, I happen to know that my mother has Discoid lupus, my grandmother and great grandmother had systemic lupus. It just was not diagnosed back then. Their kidney disease, the rashes, the multiple illnesses and fatigue are a red flag to me that these were lupus symptoms.
Plan to Change My Life
I had been a registered nurse for 22 years, but was granted Social Security Disability the first time I applied in 2000. I thought my medical condition would improve immediately without the stress of working, but it did not happen that way. I kept seeing my doctors and followed their advice concerning medications and activity. About two years ago I decided I needed to be more proactive in my illness. I started reading more articles about good health and lupus good health specifically.
The first thing I did was start exercising. I had avoided exercise because of the pain in my joints, but the doctors kept telling me that exercise would help. They suggested I swim, as this is non-weight bearing, but I don’t have a pool that is convenient. I joined a fitness center and they worked with me on what I was able to do. It wasn’t exactly a bed of roses as I did fracture my hip in the summer, 2008, without falling or having an injury. It was from long term prednisone use. I became very adept at using a cane for a few months and am much more careful now. I walk around my neighborhood most days or use a pain medication if warranted.
Next, I started replacing all my old mercury tooth fillings. The studies are mixed as to the final result but I had read enough that I was convinced. If mercury is slowly leached into my system by these old fillings, then this is something I can change. I finished that process last October, 2009.
The next component of my healing program had to be diet. It was the toughest one for me as I liked my diet just fine! However, I started reading many vegetarian diet books. The library has a good selection. I liked “Eat to Live’ by Joel Fuhrman, M.D. and “McDougall’s Medicine: A Challenging Second Opinion” by John A. McDougall. I tried being a vegan for a six weeks but the diet seemed too limiting. I did better following the plan in “Eat to Live.” I decided all I had to do was try the diet a day at a time. I found it wasn’t too difficult and the cravings for the junk food left after approximately two weeks. I have lost 17 pounds and now once again fit into my clothes, so that is an inspiration to continue with the diet. Secondly, and most importantly, I was able to stop the weekly Methotrexate injections. My pain was increased for a brief period, but now it is no different than before. I definitely attribute that to the diet.
The last component of my plan actually started years earlier but I never embraced it in the way I have over the past year. I was stressed out much of the time due to my medical problems and my husband had a stroke at age 59. Now, I take time to read uplifting spiritual material and my Bible. I take time to pray and I meditate. Quiet time is very therapeutic. Even when it seems like I don’t have time to do these things, they are the cornerstone of the change in my life. I know a joy and peace now that was not there for all those years. I try to focus on living each day to the fullest as if it were my last. I take care of myself better. I take a nap in the afternoon as necessary. I started doing genealogy research as this was the perfect hobby, as much can be done on the computer in your home and you can stop anytime you want.
I am grateful for my life today. It is getting better and there are a lot of new drugs coming on the market in the next couple of years that actually treat this disease, not just the symptoms. I am fortunate to only have mild kidney disease and not some of the other more serious features of Lupus. My goal is to see my grandchildren graduate from college, to enjoy each moment with my extended family and walk around with a smile on my face.
© 2009 Pamela Oglesby