I am a pro musician and I just found out I have Lupus
Hi my name is John. I am 45 years old and I live in Ocala,Florida.
I am a pro musician and I play Guitar in a classic rock band. I just found out 2 weeks ago that I have lupus and I am just devistated.
I feel like my life has stopped. I am scared,mad,pissed,frustrated and many other words that I cannot say. I went in to the doctor because my toe joints were hurting and she ran a arthritis blood test and it came back with S.L.E. I dont have any other symptoms but the joint pain.
I am scared and feel all alone. I feel worthless and am sad all the time.
I play with the band on the weekends and I even am starting to loose enjoyment there. I really need some friends right now.
my e-mail is: firstname.lastname@example.org
my bands website is: www.badattitude.us
please sign our guestbook............Thanks.......John
another pro musician with lupus
Carla here. I jsut found this webpage today. I've had lupus since 1992 (though it took a year for them to figure it out).
I was fired from my job in music retail (selling guitars and pianos and teaching guitar lessons) in 1993 and was denied disability because i guess i didn't use the right words on my application and didn't know you have to get a letter from a doctor. so I've been working for myself ever since, teaching guitar lessons and writing and performing original music. I had that retail job because i thought it provided security then ironically i got fired from it when i needed security the most.
I'm in the process of trying to get disability again (trial is next friday) and my laywer is ignoring my calls and my doctor won't write a letter because he says he doesn't want to get harassed by social security with a bunch of questions he can't answer. not much compassion out there among these "professionals."
anyhow i relate to the fear and frustration and fear of the future that we all go through when getting diagnosis (i also know about denial which i still slip in and out of!)
thank god for these online forums, because i believe there is more freedom of speech here. i went to a support group and the particular one i went to did not encourage discussing feelings or alternative treatments, the things i find most therapeutic. i formed my own support group- there were 4 of us in my hometown with lupus- and we talked openly about feelings and alternative care, as well as prednisone and disability etc. it felt really good to have others i could be real with.
i had a stroke in jan 2002 and could nto play guitar for most of that year and it was then that i finally learned that who i am is not what i do. when i could not even take care of myself i struggled with self worth issues.
If you are strictly joint problems, it still is scary and sucks, esp trying to play the guitar- i've played guitar since age 4 and my identity is very wrapped up in it and of courss in being able to support myself.
you may wish to check into whether you have food allergies, becaue 100% of lupus patients do have food allergies and joint problems are very often helped by diet changes. the good news is that even on a really bad day- and my lupus is severe- i can take enough drugs to make my hands work and i can still play- or rather- i am *back to being able to play again* after having to re-learn from scratch. i could nto even make a C chord 2 years ago. i can't travel and play every night- i have to pace myself and get rest- but fortunately being a musician does nto require me to get up until after noon, as i feel worst early in the day.
Oh yes i got a parrafin wax hand bath- they're only about $40- and use it to treat my hands when they're really swollen adn stiff and it's really effective.
you have my understanding sympathy and hope as a fellow person with lupus diagnosis and as a fellow pro musician
glad you are here typing!
my Social security trial date is this friday! agh! scared!
Thanks for the warm welcome!
My trial looms ever closer... it's this friday. had anyone here ever gone to trial and won?
i know several people who won with just an applicaiton but noone who's been denied twice then gone to trial then won.