Living my best life
I was diagnosed with SLE the summer of 1987. I had to have surgery in May of that year. After surgery, my incision spread from an invisible line to a 1/4" wide scar on my neck. When I went for my post-op check up, my surgeon noticed immediately. He sent me to a specialist thinking it may be Rheumatoid Arthritis, but hoping it wasn't
SLE diagnosis and treatment
After seeing the specialist, I was told I have SLE. I was 20 years old and getting married in a couple months. My legs were swelling and my joints ached terribly. They said they would do their best to help me. My mom, who was and is still one of my biggest supporters, was with me during my doctor visits. Neither she nor I had any idea what I had and she was worried it was a death sentence for me. I told her this isn't going to beat me!
I followed the treatment prescribed for me but didn't feel it was working like it should. Driving by my surgeon's office one day, I noticed he was still at his office. I stopped to see him. He took one look at me and asked what could he do to help? I explained I wasn't happy with the way the treatment was going and wondered if there was somewhere else I could go? He made some phone calls and got me into a clinic in Minnesota.
My first visit to Minnesota, they ran every test imaginable, took x-rays, and more blood than I ever thought I could give! LOL When I got there, I had a plethora of things going on. I had mild Pleurisy, UTI, aching joints, swollen legs, extremely thin blood from taking aspirin like crazy, and Kidneys that weren't functioning properly. They straightened me out after about four trips there. I went through the butterfly rash on my face, bloating from the steroids, to the hair loss from the medications and Lupus itself. I celebrated my 21st birthday by having my hairdresser give me a "buzz cut".
Lupus and pregnancy
The next part of my story starts when I find out I am expecting a baby. This is November of 1988. My OB/GYN called the clinic to ask their opinion on how to handle me. The renal doctor suggested the pregnancy be terminated due to me not being in remission long enough. He felt my kidneys wouldn't handle the pregnancy. Needless to say, that was not going to be an option with me. So, my OB/GYN who was amazing sent me to a colleague of hers that handles High Risk Pregnancies. He took one look at me and reassured me I would have my baby. They set me up with a Rheumatologist and worked my appointments out so they were on the same day and close in times too. And on July 28, 1989 I delivered my healthy baby girl by C-section. The doctor came to recovery and told me he knew this day would come the first time we met. I guess I was pretty determined.
I have since been divorced. Now remarried to a wonderful and extremely understanding man who blessed me with a beautiful step-daughter and then two more babies of our own. Both pregnancies were fine and both babies delivered by C-sections.
Working with a rheumatologist
I went through several Rheumatologists over the years. Mine must be very mild compared to others. The Rheumatologist released me several years ago and asked that copies of my bloodwork be sent to him regularly and if anything changed or I felt different to contact him.
Signs in childhood
I'm going to be 54 this summer. Looking back now and knowing what the symptoms are, I probably had Lupus in my early teen years and it was undiagnosed. My mom's side of the family has autoimmune diseases they were not aware of until later in life. My grandmother died at age 42 of kidney failure. They couldn't determine the cause. My guess...Lupus.
So like others, I do what I can do. Your body lets you know when you've done too much. I try to stay active as I have found the more I move around the better I feel. I exercise 4-5 days a week. I also walk as much as possible. I am a sun worshipper, always have been. With lots of sunscreen and a hat I enjoy it as much as possible.
I meet people all the time that are recently diagnosed and have all kinds of questions. I try to be as honest as I can and hopefully a positive influence for them. I'm happy to discuss anything with anyone needing to talk. I hope my story helps others in some way. Loving my life! Oh, I almost forgot, we have grandbaby #2 on the way! Very exciting.
Interested in sharing your own diagnosis story, treatment experience, or another aspect of living with lupus?
Are you currently in the process of family planning?