Peg's Journey

My lupus journey began 31 years ago. I was 19, single and living in Sheboygan, WI. I had been seeing my family doctor for mono and pleurisy. Everything he gave me to treat these illnesses didn't work. I was sent to an Internist who took lots of blood and asked many questions. He sent all my blood work to the Mayo Clinic. He had just finished his Medical Degree there. I was one of the so called fortunate ones. The tests
came back that I had Lupus. In 1979, no one even heard of Lupus. As far as the Doctor was concerned he would put me on mega doses of aspirin and we would see what happens. At 19, it was pretty scary, it was something no one knew anything about and it was a good chance that I might not make it.

The next couple of years I found that being in the sun would worsen my symptoms. I got the butterfly rash on my cheeks and I got flu-like symptoms. The doctor kept me on 14 aspirin a day. I was also presenting with swollen joints so he put me on an anti-inflammatory drug. This seemed to keep things under control for awhile. I got married in 1983 and a year later I got pregnant. My family doctor thought this might be a real good thing for my Lupus. They thought because of the changes in my body by being pregnant would possibly put my Lupus into remission or even get rid of it. (yeah right!) Anyway, I did feel better while I was pregnant. The birth went well and Megan is a healthy 25 year old now. When Megan was about 18 months I got really sick. I couldn't move. My joints were all swollen to the point I couldn't walk. I was so fatigued all I could do is lay on the couch and sleep. Not a good thing when you have an 18 month old. I went to see a new rheumatologist in Sheboygan and he started me on large doses of prednisone. It seemed to help. I found out I was pregnant shortly after that. The doctor kept me on the prednisone and the other drugs to keep my Lupus quiet. Not a good idea. I went to see the doctor and he couldn't hear a strong heart beat at 5 months so he sent me to the hospital for an ultrasound. The results came back that the baby stopped growing a few months before and yet my body carried it like I was still pregnant. I had a D & C to remove the fetus that was only the size of my pinky. I was devastated. I didn't have the Anti- cardio-lypin anti body at the time but they said women with lupus are at greater risk for miscarriages. In May of 1988, my son Doug was born. I went in to the hospital once a week to have his heart rate monitored while I was pregnant with him. When he came out the chord was wrapped around his neck and he wasn't breathing. He was also early. The doctor's said this was because of all the difficulties they couldn't treat me for in my Lupus. He is a healthy 22 year old now. My lupus came back with a vengeance once I had my son. I presented with many Central Nervous System problems. Severe headaches that even the drugs for migraines wouldn't help. Dr. Molony was my life savior. We had to try many different things but finally I was put in the hospital and was given methyprednisolone. Over the course of the next few years I was put into the hospital for these IV treatments. The next major complication I endured was IBS. I saw a gastroenterologist to get things under control. It seemed like everything I ate didn't agree with me. Went through many tests and had a minor surgery. Today, for the most part, I don't have too many problems with that.

I have had many problems breathing over the past decade. I went to a Pulmonologist and had test after test. Found out I have asthma so I am being treated for that. I also have only about 60% breathing capacity in my lungs. Along with the asthma, I have arthritis in walls of my chest. Taking large doses of prednisone helps the inflammation and makes it easier to breath. I also have Osteoporosis which means my bones are very weak. The test given for this is called a Dexascan. For the past 15 years my bones are like a 98 year old. I am taking Actonel which is a drug to help build the bone back. I have broken 18 ribs. Something as simple as a cough or a sneeze can cause a fracture.

In January of 2009, I had surgery on my left hip. The doctor took out the bursa and then stretched the long ligament from my hip to my knee. Still have a whole lot of pain in the area. Sometimes surgeries only make things better for a little while. I seem to have this with most surgeries I have had.

Lupus patients can present problems with their blood being too thick or thin. I never had this problem in the onset of my Lupus, but about 10 years ago I ended up with a blood clot in my right leg. A year later another one presented itself. As of today, I take Coumadin and have my blood checked frequently. The change in seasons definitely have a great effect on how thick or thin my blood is.

All in all, I feel lucky to be here. Over thirty years ago when I was diagnosed they told me I wouldn't live very long. I guess I proved them wrong. Living with Lupus is definitely a challenge everyday with the help of family and friends I will make it for many more years.