How Lupus Impacted My Life and How I Controlled the Symptoms
How It Started for Me
The First Signs of Lupus
I remember going to the doctor when I was 21 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 broke out in a red, uncomfortable rash—particularly on my nose and cheeks. This is commonly known as a butterfly rash: one of the symptoms that is absolutely unique to lupus.
The doctor never answered my question. I was treated with many different drugs for asthma, including the steroid prednisone, but I did not get a lupus diagnosis until many years later.
Since that doctor's visit, I have constantly battled fatigue, pain, and anemia. The anemia continued after an abdominal hysterectomy for endometriosis (which wasn't related to the lupus). Occasionally, I went into a type of medical remission (I still had to take 5 mg of prednisone daily), but these remissions never lasted for long.
Eventually, I developed kidney problems, which is common for people with lupus who have the other symptoms I mentioned.
I Have Many Other Conditions
While I'm at it, I'll give you a complete picture of my medical history. I also have severe osteoarthritis, Sjögren’s disease (also an autoimmune disease), chronic sinusitis, and have recently been diagnosed with bronchioectasis, a lung disease that is possibly related to lupus. I take a huge number of medications. I have had 14 surgeries, and I've undergone so many medical tests that I've lost count.
An Overview of Lupus
What Is Lupus?
Lupus is a chronic inflammatory autoimmune disease. The immune system attacks the body's own cells, most commonly the skin, lungs, kidneys, and other organs. There are four types of lupus, the most common one being systemic lupus erythematosus (SLE)—the type I have.
Lupus is most common in women and tends to run in families, which suggests there is a genetic component (although more research is needed in this area). Because I study genealogy, I happen to know that my mother has discoid lupus, and both my grandmother and great-grandmother had systemic lupus. They weren't diagnosed at the time, but their symptoms (kidney disease, arthritis, and multiple, concurrent illnesses) were recorded and raised a red flag for me when I looked at their history.
General Symptoms of Lupus
- Skin rashes, especially on the face
- Joint pain and stiffness
- Unexplained fever
- Sensitivity to light
- Chest pain
- Dry eyes
- Raynaud's Syndrome
- Sjogren's Syndrome
- Brain fog or memory loss
Diagnosis is generally based on the number of symptoms present. Most people only get a few of these symptoms. There is no medical test specifically for lupus.
What's the Life Expectancy for Lupus Patients?
When I was finally diagnosed with lupus, the prognosis was poor—largely because of a misinterpretation of research results. Lupus patients were mistakenly believed to have only about ten years left to live. This was based on studies in which researchers followed patients from the time of diagnosis for 10 years, after which time, the researchers concluded that 80–90% of the patients survived. There were no follow-ups.
Life expectancy for lupus is hard to pinpoint because it depends on the severity of the symptoms and possible complications. However, the prognosis is usually positive with early diagnosis, appropriate treatments, and regular follow-ups.
What I Did to Manage My Lupus Symptoms
I thought my medical condition would improve immediately once I retired from nursing due to the reduced stress of working, but it did not happen that way. I was granted Social Security disability insurance (SSDI) the first time I applied in 2000. 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 about managing my illness. I started reading up on my condition and how I could gain and maintain good health. One book I found helpful was McDougall’s Medicine: A Challenging Second Opinion by John A. McDougall. As I learned more, I tried different strategies to manage my condition.
Here are the things I did that improved my symptoms.
I Started Doing Mild Exercise
I used to avoid exercise because of the excruciating joint pain, but my doctors kept telling me that exercise would help. They suggested I try swimming as it is a low-impact (non-weight-bearing) exercise. Unfortunately, I don’t have convenient access to a pool.
I did join a fitness center, where I worked with the personal trainers on exercises I could do. It wasn’t exactly a bed of roses. I had fractured my hip in the summer of 2008—without falling or having an injury. It was from long-term prednisone use, which caused osteoporosis.
I also became very adept at using a cane. I am more careful now because of my pre-existing conditions. I walked around my neighborhood most days and used pain medication when it was warranted.
I Changed My Diet
I knew I had to improve the way I ate. This was the toughest change for me because I liked my diet just fine the way it was! I started reading many vegan and vegetarian diet books. The library has a good selection. I tried being a vegan for six weeks, but the diet seemed too limiting.
I did better following the Eat to Live Diet by Joel Fuhrman, MD, which I liked. I decided all I had to do was try the diet one day at a time. I found it wasn’t too difficult, and the cravings for junk food were gone after approximately two weeks. I lost 17 pounds, which I gained when I was on a high dose of prednisone. I found I once again fit into my clothes, and that was enough motivation to continue with the diet.
I Replaced My Mercury Tooth Fillings
Current research yields mixed results, but I read enough to be convinced that the mercury in my fillings could be slowly leaching into my system, causing harm. Based on my own experience, I can say that after all my mercury fillings were replaced in October 2009, I actually seemed to feel better!
I Focused on my Spirituality
The other thing that was so important to me was focusing on my spirituality. I had always believed in God, never spent much time meditating or praying. Setting time aside for meditation and prayer helped me immensely. I read uplifting material and the Bible. Quiet time is very therapeutic. Now, I am almost never depressed. I have a can-do attitude and have found peace in my life.
Appreciating What I Have
The last component of my plan actually started years earlier, but I never fully embraced it in the way I have over the past several years. I used to always be stressed out because of my medical problems and the fact that my husband had a stroke at age 59. He hasn't been able to work since the stroke, and he now has some disabilities. However, we both survived and we take care of each other. It is amazing what you can accomplish when your work as a team!
My Life Today
My lupus symptoms have improved. Eventually, I was able to stop the weekly Methotrexate injections. My pain increased for a brief period, but now, it is no different than it was in my earlier years with lupus. I definitely attribute that to the change in my diet. I also lost about a third of my hair by this point (due to the Methotrexate), so I wore a wig while it grew back.
I am fortunate to only have mild kidney disease and not some of the other more serious complications of SLE. However, the osteoporosis due to long term prednisone use is a major problem now. On top of that, I've had two back surgeries, so I still have pain almost continually. Despite that, I have tried to remain 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 know a joy and peace now that was not there for many years. I try to focus on living each day to the fullest—as if each day was my last. I try to enjoy each moment with my extended family and walk around with a smile on my face. I am taking better care of myself. I take a nap in the afternoon as necessary. I started doing genealogy research: the perfect hobby for me since it can just be done on my computer at home.
This content is accurate and true to the best of the author’s knowledge and does not substitute for diagnosis, prognosis, treatment, prescription, and/or dietary advice from a licensed health professional. Drugs, supplements, and natural remedies may have dangerous side effects. If pregnant or nursing, consult with a qualified provider on an individual basis. Seek immediate help if you are experiencing a medical emergency.
Questions & Answers
© 2009 Pamela Oglesby