Skip to content
My WebMD Sign In, Sign Up
When I Found Out I Had Lupus, I...
avatar
Andie_WebMD_Staff posted:
How would you finish this sentence?

"When I found out I had Lupus, I..."

What were your first thoughts and feelings? How did you react?
Reply
 
avatar
anowlin responded:
Even though I was/am a nurse, I had no preconceived notions about lupus. Was I naive or what? After CNS lupus was treated successfully and symptoms (so I thought) were gone, lupus was nothing more than a darrn inconvenience and the source of my joint pain.

Then, I started having incredible pains in my joints; pain that felt like my ankles and all weight-bearing joints. MRIs showed osteonecrosis, so now I've been living w/ joint replacements and the like. But the cause could have been lupus or the steroids I took for lupus, or the clotting disorders I have from lupus.

Welcome to the world of side effects of lupus. I have now several blood clotting disorders from lupus and now I'm dealing w/ pulmonary hypertension from lupus. This 'thing' that I thought I wouldn't bother me and was only a darn inconvenience is beginning to be so much more than that.
 
avatar
K2isKsquared responded:
I was glad to know my opponent's name. I had been sick for a while, so knowing who my enemy was and what his standard tactics were gave me a sense of relief.

I was angry to know that this calamity had fallen on me, and on my husband and children. All seemingly innocent people who had done nothing to deserve a life sentence of this magnitude.

I was sad. To think that each and every day of the rest of my life could be filled with the agonizing pain I was in . . . so this thought made me suicidal, as I could not fathom going on minute after minute, hour after hour, day after day living in the torture chamber my body had become.

I was in denial. No Way. The doctor was wrong. I couldn't have Lupus. It must be something else.

I was in search of a road back . . . back to the person I used to be full of energy, fun, and tackling every facet of life with confidence and happiness. Surely I could find that person again. There were days, even weeks when I felt okay, I just needed to hang on to those moments . . . and make them last.

All of these emotions washed over me in the long car drive back from my doctor's office when he said "you have lupus." A drive filled with tears and shouts, with my very painful hands beating on the steering wheel.

When I found out I had lupus? It was a "game over" experience. But like in the Nintendo games, I later found a few extra lives. You know like when the big Mario gets zapped, and he comes back as Mini Me. He's out of bullets, but he's still in the game, sort of.

K2


Featuring Experts

Dr. R. Swamy Venuturupalli is a board-certified rheumatologist practicing in Los Angeles. He is Clinical Chief of the Division of Rheumatology at Ce...More

Coping
With Lupus

WebMD's Day2Night will help you develop personal coping strategies for living with lupus – at home,
at work, or with family
and friends.
Visit Lupus Day2Night

Helpful Tips

Music Video Tips on Managing Chronic Pain!
My newest music video, hope you guys like it! HUGS and ?, JJ "Never doubt that a small group of thoughtful, committed people can change the ... More
Was this Helpful?
1 of 1 found this helpful

Related Drug Reviews

  • Drug Name User Reviews

Report Problems to the
Food and Drug Administration

FDAYou are encouraged to report negative side effects of prescription drugs to the FDA. Visit the FDA MedWatch website or call 1-800-FDA-1088.