‘I Felt Like I Was Dying’ — Debbie’s Lupus Diagnosis Story
Anyone who knows of lupus or who has lupus knows that a diagnosis can take a long time. Lupus is often referred to as the disease that disguises itself — it will act like different diseases so sometimes you’ll get misdiagnosed, and that is what happened to me so many years ago.
Debbie’s Lupus Diagnosis Story
When I turned 25 years old, I started to feel a terrible pain in my legs and arms. Before I knew it, I couldn’t stand up. I couldn’t walk. I was very weak.
I started doing what I call the “doctor dance, ” going from doctor to doctor to doctor. They all had different theories of what was going on with me.
I was 25 years old, and I felt like I was dying and I didn’t know what was happening to me.
I remember being so scared that I wouldn’t wake up the next morning. It was a tough time in my life.
What’s Happening To Me?
Luckily, I had the support of my parents and friends, and I made it through that time, but it still was very hard.
At the end of that time, I was told that I had fibromyalgia, which I do have. I slowly started living life better.
I took my medication, and I went to physical therapy. Before you knew it, a year and a half went by, and I was out of the wheelchair. I didn’t need to use a cane or a walker, and I was talking about going back to work.
Many years had passed, and when I think back now, I realized that there was always something wrong. Even as a child; I never could keep up with the other kids.
When I would go to the beach and get sun, I always got headaches. Sometimes, I would get little rashes, but then I would get a great tan so I would just say, well, it was just a little sunburn.
There was just little hints that something was going on and it wasn’t only fibromyalgia because I won’t say just because fibromyalgia is a tough disease to have.
I’m going forward with life, and I started doing the doctor dance again, and then I quit the dance. The doctors wouldn’t listen to me.
I got told everything from it’s in my head to, “You’re just stressed. You need to relax and do yoga.” How could I do yoga when I’m hurting from head to toe? I can’t keep up with my father who was like 70 years old at the time.
The Moment I Was Diagnosed with Lupus
In 2008, I started feeling sick again. I went back to college, and I was studying anatomy in hopes that I could go back to nursing school to earn my RN degree, as I have an LPN degree that I used many years ago.
I would have homework, I tried to concentrate and study, and it was frustrating me to no end.
At the time, I had just gotten married to the love of my life, a different man who has made life a wonderful, happy, positive, secure journey. I love him more than words can say, but that’s a whole other video.
He told me that I should go to the doctor. I went to our regular doctor, and I told him about my history in the past, and he said, “I think you might have lupus.”
So he referred me to a rheumatologist. We began doing more tests, but there was a difference.
This doctor listened to me, and he was concerned about me, and that made me feel good. This made me feel that we were going to find out what was going on.
Within less than three weeks, I had my diagnosis. I have systemic lupus erythematosus (SLE.)
Some might say that must have been the most horrible day of your life, but in many ways, it wasn’t. I finally found out what was happening and I could start a journey of treatment.
All those years doing the doctor dance, and suffering and crying, in some ways it was worth it. I finally know what I have, and it’s not in my head, it’s not my mind or just my imagination.
Don’t Give Up, Keep Searching
There are hardly any people that go and get a diagnosis right away. So if you believe that you have the signs and symptoms, keep searching for a doctor.
You might have fibromyalgia, you might have arthritis. You might not have lupus. I pray you don’t. But if you do, don’t feel alone. We’re here.
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