Lupus - My Story
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 45 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”.
This rash is 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 an abdominal hysterectomy. This helped slightly with the anemia, but was done due to endometriosis, which has nothing to do with lupus.
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 severe osteoarthritis, Sjogren’s disease, chronic sinusitis, and have recently developed asthmatic bronchitis. 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, when I was first diagnosed the prognosis was poor with an expected ten more years of life for lupus patients at that time.
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, but their symptoms are recorded. Their kidney disease, the rashes, arthritis, the multiple illnesses and fatigue are a red flag to me that those were lupus symptoms.
Other symptoms may include: fatigue, joint pain and stiffness, fever, skin lesions that worsen in the sun, chest pain, dry eyes, Raynaud's Syndrome, headaches, confusion and memory loss. Most people only get a few of the symptoms, but Systemic Lupus can only be diagnosed through the number of patient symptoms. There is no medical test absolutely specific for lupus.
Changes I Made
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, which caused osteoporosis.
- I became very adept at using a cane for a few months, and I am was more careful now. I walked around my neighborhood most days and used 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, MD and “McDougall’s Medicine: A Challenging Second Opinion” by John A. McDougall. I tried being a vegan for 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 lost 17 pounds, which was gained when I was on high doses of prednisone. Once again I fit into my clothes, so that is an inspiration to continue with the diet.
- The other thing that was so important to me, was to have a kind of spiritual awakening. I had always believed in God, but now I spent time in meditation and prayer, which helped me immensely. I read uplifting material and the Bible. Quiet time is very therapeutic. I am almost never depressed. I have a can-do attitude and peace in my life.
I was able to stop the weekly Methotrexate injections. My pain was increased for a brief period, but then it is no different from my the earlier years. 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 several years. I use to be stressed out much of the time due to my medical problems, and my husband had a stroke at age 59. He has some disabilities, and he never was able to work again. But, he survived, and we take care of each other. It is amazing what you can accomplish when your work together.
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 am better at taking care of myself. I take a nap in the afternoon as necessary. I started doing genealogy research as this was the perfect hobby since much can be done on the computer in your home.
Exercise - Yes Walking
My lupus symptoms have improved, and there are new drugs coming on the market in the next couple of years that actually treat this disease, not just the symptoms. Benesta is the first medication that actually treats lupus that is on the market over the past fifty years.
I am fortunate to only have mild kidney disease and not some of the other more serious features of Lupus. However, the osteoporosis due to long term prednisone use is a major problem now. Having had two back surgeries, I still have pain almost continually. I have remained as independent as possible.
My goal was to see my grandchildren graduate from college, which has happened for two and other one is working on it. I try to enjoy each moment with my extended family and walk around with a smile on my face.
The copyright, renewed in 2018, for this article is owned by Pamela Oglesby. Permission to republish this article in print or online must be granted by the author in writing.