Let's Play a Game
Let me start out by saying I was a late bloomer. I got my first period just one week before my 15th birthday. Now, you're probably wondering what that has to do with Lupus. Hormones. The onset of Lupus symptoms in females, more often than not, coincides with puberty.
I was a freshman in high school, doing everything I could to get through each day. I was so tired and achy. I didn't know there was anything wrong with me. Everyone kept asking me, even back in elementary and middle school, if I felt alright because my cheeks were red. I don't know how many times I was sent to the school nurse for a temperature check. I was always sent back to class, my temperature was normal.
Participating in activities
As freshman year was coming to a close, I tried out for cheerleading and made the squad. Over the summer I worked hard to raise the money to pay for my uniform and camp. It was stressful, but I did it, walking everywhere or riding my bike. I was exhausted. My knees hurt almost constantly.
When school started again, I had already had to quit cheerleading. My right foot had started to swell. Not the whole foot, mind you, just the top. Occasionally, one or two toes would join. My pediatrician didn't know what was going on. He ordered X-rays and MRIs, but those showed nothing out of the ordinary. Thinking it was stress edema because of the cheerleading, he prescribed anti-inflammatories and crutches. I was to stay off that foot and elevate it as often as possible.
After 3 months on those crutches, I was really tired of them. I was also tired of being called a fake. The other students couldn't see anything wrong with my foot (unless I took off my shoe and sock and showed them).
Waiting for a diagnosis
I seemed to be playing a game called 'Stump the Doctor'. My doctor still couldn't understand what was causing the inflammation. My physical exams didn't answer any questions. Blood tests only ever showed a slightly elevated white cell count. He suspected Lymphatic Cancer and wanted to do a biopsy. My mother, oh, she was so patient. She didn't like the idea of operating based on nothing more than a suspicion. She took me to another doctor
Digging into family history
At the first appointment with this new doctor, we went through the usual new-patient questions. Health history, medications, physical, etc. He, too, ordered an X-ray and an MRI of my foot, though he also wanted images of my knees. When the scans showed inflammation in my knees, my new doctor went a bit deeper into my family medical history and asked the question…
Does anyone in your family have Lupus? My grandfather had Lupus. Upon hearing this bit of information, Dr R (name withheld) referred me to my first rheumatologist.
Working with a rheumatologist
Now, the rheumatologist was an older doctor and probably hadn't had much experience working with someone my age. (Remember, I was only 16 at this time) He talked to me like I was 5. X-rays and blood tests were ordered, again, and when the doctor had the results we talked again.
Being diagnosed with RA and Lupus was bad enough because it scared the crap out of me. Telling me I couldn't have kids was just depressing. I was later prescribed antidepressants. That rheumatologist was wrong, though, in saying that. Nearly 9 years later, I gave birth to my first child after what my OB called a "textbook pregnancy.”
Don't worry folks, this is just the start. More to come!
Interested in sharing your own diagnosis story, treatment experience, or another aspect of living with lupus?
How often do you experience arthritis or joint pain?