(stolen from Roald Dahl) or "Oh No, Not Again" (stolen from a line from Douglas Adams).
It would be about all the times that I just get used to life being a certain way, and lupus suddenly changes everything in an instant.
There would be the "hey I think this flare's over" followed immediately by "I don't think I can get out of bed."
There would be diagnosis, re-diagnosis, un-diagnosis, re-re-diagnosis.
There would be pills started, pills replaced, pills started, pills stopped, pills started ad infinitum.
And in the midst of it all, there would be me, trying to find ways to have a life that seems to me worthwhile despite all the weird things my body and my medications are doing.
I hope it would be a positive story, despite all the setbacks.
I asked some other lupies what the movies of their lives would be called, here's what they said:
- " A life half lived" - Julie
- "The Battle Inside" or "I'm Killin' Me!" - Renee
- "LU?US" L.ets U.ndo P.eoples U.ndesereved S.uffering.. because ......L.upus U.nfairly P.unishes U.s S.everely. -Randall
- "Life with the Butterfly" - Patricia
- "Is There Life Out There?" - Jeannine
- "Lupie, Purple Butterfly" or "Purple Butterfly, Battle Within" - Myra
- "Lupus Living Nightmare" -Maria
- "Rebellion: Attacking Lupus" - Maggie
- "Counting the Spoons!" - Garnet
- "The Invisible Battle" - Melinda
- "Death Becomes Her" - Courtney
- "Duel in the Sunshine!" - Judy
- "Carry On Regardless" - Julie
- "The Rage Inside" - Kimberly
- "I Know I Look Well!" - Christel
- "The Daily Struggle" - Kathleen
- "Here We Go Lupty Lu" - Suzie
- "Pyjama Day Again" - Amy
- "No Pain No Gain" - Anne
- "Girl Interrupted" - Rose
- "Lupie Madness!" - Michele
- "Living Dead" - Angie
- "Fatigue" - Char-less
- "Miserable Me" - Rolinda
- "Mayhem" - Di
- "Oh Loopy" - Sal
- "Lucky Me" - Kim
- "El Transformó Mi Vida" - Monchy
- "Hard Times" - Rena
- "Fearless" - Sheri
- "YES it is Lupus!" - Karen
- "Lupus Warrior" - Lisa
Some of these movies would be epic stories of battling against the odds. Some would be sad but sweet stories of people putting on a brave face for the people they love. Some would be dramas about someone juggling all the elements of life, with an extra set of challenges that no-one else suspects. Some might even be madcap comedies about brain fog and practically living in the doctor's surgery. Every one of them would be different, unique. Everyone experiences this disease differently, and everyone handles the challenges it presents differently. Every story is worth telling.