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| Ramona Runyon - Battling Lupus in Her Own Words |
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A JOURNEY WITH SYSTEMIC LUPUS ERYTHEMATOSIS
by Ramona G. Runyon
Systemic Lupus Erythematosis (SLE) is a chronic disease where a person’s immune system attacks its own body’s healthy as well as foreign cells and tissues, affecting any system or organ in the body. Approximately 1.5 million persons in the United States have been reported as having lupus. It is more prevalent in women between the ages of 15 to 44; however men, children and teenagers can also be affected. Twenty-six years ago, I was given a diagnosis of SLE from a team of physicians (hematologist, rheumatologist and neurologist). At 30 years of age, my beginning symptoms began with extreme tiredness, feeling unwell, chronic anemia, very low white blood count, and severe bouts of migraine headaches, “butterfly” mask and a skin rash instead of a tan when I would be out in the sun. Once an active woman who had a fulfilling career, a wonderful family life with a husband and two small children, and was involved in several church ministries, I was now just struggling to function each day. Then other medical problems connected to lupus were emerging such as: arthritis, degenerative disc disease, gastro-intestinal tract disorders, and vascular involvement. Also surfacing were right field vision loss in both eyes, cognitive impairment, neuropathy, peroneal nerve damage, foot dropsy, and walking difficulties from vasculitis, ischemia, and lupus involvement in the Central Nervous System (CNS). Recent discoveries revealed additional problems in my left eye and leakages in the heart and the pulmonary valves. As the disease worsened, I was unable to work or manage my household, and needed assistance for ambulatory and self-care skills. Now my team of physicians have increased from the aforementioned to include a family physician, an ophthalmologist, a neuro ophthalmologist, a gastroenterologist, and a cardiologist.
Treatments are different for each person who has SLE according to their need and symptoms. Medicines usually have side effects to them and I was always asking the physician who prescribed them what they were and if they would go with the medicines that I was already taking. Initially, I was given aspirin therapy for inflammation. It helped little and caused a temporary hearing loss the short time that it was prescribed. Then corticosteroids (Prednisone) and hydroxychloroquine sulfate (Plaquenil) were introduced. Prednisone in high dosages caused a lot of weight gain, head pressure, and made me susceptible to infections. I stayed alert to vision changes when using plaqenil. Then nonsteroidal anti-inflammatory drugs (Orudis, Salasate) were prescribed for arthritic pain and only Orudis caused stomach problems for me. Many years, I stayed in the hospital numerous times. The nursing staff became like a second family. When I had vasculitis or a serious relapse, methylprednisolone Solu Medrol Pulse treatments were given in high dosages through IV in the hospital. My appearance, weight, thinking, interacting and functioning were much affected by this powerful drug. However, it was successful on several occasions. IV Chemotherapy Cytoxin with anti-nausea medicines then was given intermittently to me for a period of years as my disease progressed. At first, I didn’t know if I would be able to keep it up after a couple of treatments due to nausea, but I continued and I am glad I did as it was beneficial. The anti-nausea medicines improved over the years; I was able to take Zofran and Compazine. The next treatment included the use of an immunosuppressive antimetabolite (Imuran). Now the pill form chemotherapy of Methotrexate is being used with Plaquenil and Salasate. Other medications for neurological, gastro-intestinal, and related problems are also taken.
Besides all the medicine issues, there is an ongoing problem with the Lupus and its relationship to the sun. They simply are not friends. There is also a problem with tanning beds. Either situation can trigger a lupus flare. So when going outside, I cover my skin with sun protection lotion. I avoid tanning beds. Vacation trips are now scheduled in the autumn.
This disease has taught me to appreciate life one day at a time and to be grateful awakening every morning. Prayer support from others and my reliance and faith in Jesus Christ has had a direct impact in coping with all of the medical problems. I have learned to work with the symptoms and not waste energy by fighting against them. Asking for help or assistance from others in my daily life is sometimes difficult, but my loving and supporting family makes it easier. SLE has also taught me that I need to be my own health advocate by learning more through research studies and doctor’s articles as well as making inquiries to my own medical team of physicians. Sharing about what lupus is or talking with others who have been recently diagnosed or are going through a difficult time is a way I can help someone. I try to be positive and thankful for each day of life I’m given.
Besides having lupus and all its symptoms and treatments it imposes on my loved ones and me, it is frustrating in the following ways:
- There needs to be better and affordable treatments which offer fewer side effects.
- When there are different medical views of why you have a certain medical problem.
- The medical costs for multiple doctor visits, diagnostic testing, monitoring testing, medications and treatments.
- With SLE, other auto-immune disorders may also occur along with it such as Sjorgrens syndrome, Reynaud’s phenomenon or sugar diabetes.
- When I can’t do or accomplish what I would like.
- Guilt I feel sometimes when my spouse helps me with my care and shoulders most of the household tasks.
- Due to susceptibility to infections, I am careful to avoid crowds and sick individuals throughout the year. My family, church friends and personal close friends are privy to this and warn me of impending illnesses.
- Not being able to plan ahead.
- Difficult to judge the amount of energy I have to expend on a “better” day.
For twenty-six years, it has been and still is my hope that there will be a cure for lupus. I have lost three special friends to this disease and do not want to lose another. Further research, studies, and medicinal explorations are essential for a cure to happen. However, these are expensive endeavors and a lot of the funding relies on donations. Join me in this united cause to find a cure by sending a donation to the Lupus Foundation of America! We can make a difference together!
Ramona G. Runyon
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