Today’s topic for the Health Writer’s Activist Month Challenge is to write about a “first” in your life: “Write a post about the first time you did something. What is it? What was it like? What did you learn from it?”
I decided to write about my “first” diagnosis of lupus. As a young teen in middle school, I felt “kind-of-bad” two and three days of the week. I would get tired, zone out while doing chores, and frequently had headaches, stomach cramps, muscle pain and the strangest “acne” across my cheeks.
For about two years I went back and forth to different doctors. My pediatrician had me tested for everything from lead poisoning to lyme disease. It wasn’t until I had a seizure in high school (which my mom writes about in A Mother’s Journey), that I saw a rheumatologist who finally diagnosed me with lupus.
con·grat·u·la·tions: an expression of joy in the success or good fortune of another.
That diagnosis was the best news I had in a long time. While I was terrified by having an autoimmune disease, I was relieved that my symptoms had a name. There wasn’t some phantom bad mojo that was stalking me; instead, I had a real, honest-to-goodness medical problem that now could be treated.
That diagnosis was a blessing. I believe to this day that my early diagnosis (and treatment) is what helped me have such a full life over the last twenty plus years.
Katina Rae Stapleton
PS. If you are concerned that you or someone you know may have lupus, check out Diagnosing Lupus, a resource provided by the Lupus Foundation of America. Then contact a medical professional for more information and assistance.
Posted in Brain Fog, Fabulous, Family, Fatigue, Feeling Bad, Guest Butterfly Lesson, HAWMC, Lupus, Lupus Rash, Pain
Tagged childhood lupus, diagnosis, Fabulous, Guest Blog, Guest Butterfly Lesson, HAWMC, health, high school, Lupus, Malar rash, Pain, Systemic lupus erythematosus, teen lupus, WEGO Health
Today’s Health Activist Writer’s Month Challenge Prompt is:
“Make a list of the 5 most difficult parts of your health focus. Make another top 5 list for the little, good things (small victories) that keep you going.”
So, without further ado . . . .
Top 5 Most Difficult Things About Having Lupus for 20+ Years
1. Lupus is painful
2. Lupus is exhausting
3. Lupus is “mysterious” & hard for people to understand
4. Lupus gave me “Funny”, sensitive skin
5. Lupus can affect any part of my body at any time
Top 5 Small Victories That Have Kept Me Going 20+ Years with Lupus
1. I developed an “Iron Will” to survive and thrive
2. I do not take feeling good for granted
3. I discovered that I have wonderful family & friends that love me
4. Lupus provided inspiration for me to write
5. Telling my story helps me help others with the disease
Keep strong and carry on,
Katina Rae Stapleton
P.S. In Dinner for Five I wrote that I would have loved to meet Orison Swett Marden, the author of An Iron Will. This is one of my favorite passages:
“Yet in spite of all this, in defiance of it, we know that an iron will is often triumphant in the contest with physical infirmity. Brave spirits are a balsam to themselves: There is a nobleness of mind that heals Wounds beyond salves.”
Posted in Family, Fatigue, Feeling Bad, HAWMC, Lupus, Lupus Rash, Pain, Sun Sensitivity, Writing
Tagged HAWMC, health, Lupus, Pain, Systemic lupus erythematosus, WEGO Health