How Lupus Changed My Life
You Don't Look Ill with Lupus
My Lupus Diagnosis
I was in the prime of my life and thought no one could be happier or more fulfilled than me. My oldest daughter was just entering middle school and was happy and well adjusted. My twins, then 5 years old, were adorable. I loved watching each of the children develop and enter into each new stage of their lives.
I was only 32 years old, and I only saw good times ahead. However, one morning I found I could not get up to care for the children. I was used to having an enormous amount of energy, and I often did all my husband's outdoor chores as well as my own. He traveled a lot for his job, and I felt happy to help him out in any way that I could. I always missed him terribly though, and evenings were particularly difficult.
Ironically, I had just had a physical, and my doctor had given me a clean bill of health. It was the beginning of summer, and I was ready to help out with vacation bible school at our church.
I had noticed some red blotches on my legs and arms and passed them off. Being a nurse, I knew the symptoms of lupus included a butterfly rash across your face—not blotches on your extremities.
It wasn't until the overwhelming fatigue hit that I became afraid something was seriously wrong. I felt like a balloon with no air in it. I would get out of the bed long enough to fix breakfast, dress the children and settle them down to play, but try as I might I could not shake the fatigue.
The only other symptoms I recognized from my college studies were hair loss, mouth ulcers and sun sensitivity.
Finally I called my doctor and asked him to run an ANA, or antinuclear antibody blood test, on me for lupus. He laughed, but agreed to do the blood work. This test would show if I had inflammation going on. It was a Friday morning, and I waited anxiously all weekend. On Monday morning he called to apologize for laughing and told me my test results were off the charts. The results showed that I was positive for a form of autoimmune disease.
I was devastated. What did I do wrong? I was immediately referred to a rheumatologist and made the first available appointment, which was 6 weeks later. This was the beginning of my walk with lupus.
Eliminating the side effects of prednisone use
Avoid the Sun
The Lupus Progresses
As the weeks passed my symptoms got worse, a lot worse. I was in so much pain and had so much fatigue I did not want to do or go anywhere. My social life stopped. I remember laying in bed just starring at the wall. I did not even have the energy to pay attention to a television show or read a book. I would rest between activities with my children then twins 5 and a daughter 9. I felt as if my life was slipping through my hands.
My husband had to work.. I had worked off and on as a nurse but it was almost impossible at this time. My children became afraid and I did not even pick up on it until one ot the twins asked me if plaquenil an antimalarial drug I was started on would make me all better.
When I saw the rheumatologist my ANA was still high as well as a high sedimentation rate another positive sign of inflammation in my body. Through the labs and symptoms she was able to quickly diagnose my lupus.
I still had to drive when my husband traveled and I can remember driving the children to Wednesday night church with the palms of my hands . My fingers were so swollen, hot and painful that I could not grasp the steering wheel.
One day I noticed a chicken pox like rash on my body. I went to the rheumatologist and was sent to a dermatologist for a biopsy to see if I had vasculitis.These tests were also positive. With large doses of prednisone I began to get better but gained weight and a round face. The following years were up and down as I fought for my health.
After a couple of years on prednisone, plaquenil (an antimalarial drug) and NSAIDS (anti inflammatory medication) I developed severe back pain with sciatica and was diagnosed with a herniated disk possibly due to the prednisone use. I could not sleep well at night and began to spend a great deal of time in prayer. I came to accept my disease and tried to do the best I could. My biggest fear was how much of my children's life I was missing out on so much on.
My back pain and sciatic became worse to the point that I could not get comfortable either sitting or standing. I developed a pronounced limp and began to lose muscle mass in my right calf.
I had worked part time off and on during our marriage and we also fostered infants. Soon all such activities had to stop.
I did see a surgeon about my back but it was not until my neighbor moved in, a neurosurgeon that I was able to find anyone to help me.
Phil preformed surgery on my back and found a ruptured disk and above that another bulging disk
Post surgery I began physical therapy and massage and finally found some relief from my pain.
By this time I had accepted my diseased but still mourned for lost time with my children. Today they are grown and we have 4 beautiful granddaughters. I have good and bad days but have learned to read my symptoms better and not to overdue.
What Organs Lupus can Effect
General Symptoms and Care
Doctors do not know the cause of Systemic lupus erythematosus. It is believe people are born with a predisposition to the disease. Something in the environment then triggers the disease such as stress, virus or other factors in the environment. Lupus is more common in women than in men and more often manifested in blacks, hispanics and asians. Sunlight is thought to trigger lupus symptoms as it causes inflammation. Certain drugs can also trigger symptoms. The drugs include; chlorpromazine; Apresoline and also Pronestyl and Procanbid. Another possible trigger is the Epstein Barr virus.
It is important for people with lupus to get regular exercise, wear sunscreen, avoid smoking and exposure to infections. Vasculitis can cause an increased risk of heart problems and atherosclerosis which can lead to heart disease . This is why exercise and a healthy diet are both important.
Lupus can cause central nervous system problems such as headaches, seizures and hallucinations.
Kidney problems are very common and can be treated with medications. It is the most common reason for death of lupus patients Signs of kidney problems include generalized itching, chest pain, nausea, vomiting, leg swelling and weight gain.
People with lupus have an increased risk of non Hodgkin's lymphoma and lung cancer possibly from medication used to treat the illness but other than that they have a lower chance of cancer than the general population.
Kidney problems are the most common complication and can be tested for by creatinine clearance test and urinalysis.
Finally lupus can cause avascular necrosis or death to bone tissue. The hip joint is often effected and prednisone can contribute to this problem. Also miscarriage can be much more common in lupus patients.
Signs and symptoms of lupus Include:
- Weight loss or gain
- Joint pain, stiffness and swelling
- Butterfly-shaped rash on the face over the cheeks and bridge of the nose
- Skin lesions that appear or worsen with sun exposure
- Mouth sores
- Hair loss
- Fingers and toes that turn white or blue when exposed to cold or during stressful periods (Raynaud's phenomenon)
- Shortness of breath
- Chest pain
- Dry eyes
- Easy bruising
- Memory Problems (Brain Fog)
Try to Appreciate the little things in Life
It has been more years than I care to remember since I was first diagnosed. I always felt fortunate that my blood work showed positive results; unfortunately, at the time I did not think of how it would affect my ability to get health insurance in the future, which has been a struggle. My husband has been self-employed, and I have been able to be a beneficiary by doing some work for him.
My eyes have not had problems with plaquenil until just recently I began seeing spots or floaters from the sides of my eyes. I have discontinued the use of plaquenil because of this. I have always thought of it as an insurance policy against systemic lupus effects.
I think maybe the most difficult thing to deal with is that I don't appear sick even when I feel lousy. My joints ache till around 11am most mornings. Whether that is lupus or fibromyalsia is a catch 22. who knows. I try to exercise but then if I overdo I find myself overly tired for days. My husband says he wakes up feeling good every day and I have forgotten what that feels like.
Lupus brings loneliness, as you are too tired to get together with people like you used to. I love people and love to see people, but if you asked me if I wanted to plan an activity for tomorrow I would say no, because I don't know how I will feel.
I have decided to stop one of my volunteer activities, and because it meant a lot to me I want to use the time to try to feel better, whatever that means. Eating better, vitamins, sleep, etc.
I hope I have a better report in 3 months. Thank you so much for reading and caring.
References & Useful Resources
- The Mayo Clinic
- Molly's Fund - Fighting Lupus