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View Full Version : I am a pro musician and I just found out I have Lupus



jrainey5759
06-28-2004, 02:14 AM
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: badattitude5759@aol.com
my bands website is: www.badattitude.us
please sign our guestbook............Thanks.......John

jennie
06-29-2004, 05:52 PM
Hello,

I think I know how you feel. I was diagnosed late last year. Before this I spent about 8 months totally bedridden. I had to leave my job as the work was too physical. So everything in my life came to a crashing halt.

The way I get through each day is to look at the whole thing as a new chapter in my life rather than something that has devastated it. So all the little things that interested me but I never had time to try, I can now do. Now I believe I hold the world record for having the most hobbies.

What symptoms do you have? Are you still in the band? What instrument do you play?

Cheers
Jennie

Saysusie
06-30-2004, 10:14 AM
Hi John;
I, too, am a musician. Actually, a vocalist. With this disease, I have had a miriad of problems (and even some unrelated problems) which have affected my singing. But, each time that I think I will never sing again....I find that, somehow, my voice is still there. It has changed several times which meant I had to re-learn how to use and control it more than once. But, I never let my lupus keep me from doing the one thing that I truly love the most ....."MUSIC"
It is a constant challenge, but I am resolved to never, ever give it up.
Please do not let this disease take you away from the joy of your music. Like Jeannie said, keeping busy doing things that you enjoy is very, very important!!
We all know how sad and lonely this disease can be....your doctors should recognize that what you are going through is pretty normal for Lupus sufferers and he/she should start treating you for your symptoms. Please know that YOU ARE NOT ALONE. You are valuable and important...treat yourself as such!! Make your health your priority, know that there are medications, treatments and all kinds of help for you. We are here anytime that you need us.
Don't give up...keep making music!!!
Peace and Blessings
Saysusie

Missy
07-02-2004, 08:55 AM
Welcome, John. I'm sorry to hear of your pain. I can only hope that now that you know what is going on, that your docs can help treat your symptoms and give you some relief. I think it's great you have music as a creative and energy releasing outlet. You are going to have some great emotions to lend to your music! I'm 27, and have had pretty bad kidney problems for 6 months, but seem to be improving. I have to say that sometimes I thank Lupus, because it's given me much more perspective on life. I'm way more appreciative of my good days, appreciate the teeniest things, and really have learned that there are a lot of people that care about me. It's funny how you can forge that. It might sound a tad cliche, I know, but I'm not mad at Lupus or my body. I want to focus my energies, instead, on improving my health. Acupuncture has really helped my kidney pain (I'm on a ton of Western meds as well). And letting the people in my life know what is going on has been integral - they might not know what to say, but they really do want to know how you are. And I think it can help with the loneliness, depression, etc.

Good Luck, John. I'll be thinking of you!

Missy

carlau
07-08-2004, 09:01 PM
hey there
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!
Carla

Saysusie
07-12-2004, 12:27 PM
Hi Carlau and welcome to our forum :lol:
Thank You For Being Here and Thank You For your supportive words to John.
I am glad to hear that you were able to return to playing guitar after your stroke and that you have not given up on your music!!
Yes, we are here to provide you with a place to talk about your feelings, a place to feel supported and to know that you are not alone!!
Again...thank you and Welcome
Saysusie

carlau
07-12-2004, 06:26 PM
Hi!
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.
Carla

Saysusie
07-14-2004, 11:04 AM
Carlau:
I do not know of anyone who has wone at trial. I was denied twice and just gave up :? Maybe I should have continued to fight, but the stress was a bit too much for me.
I wish you the best of luck and I admire your strength to keep up the fight! It is so unfair how DIB just sweeps our cases aside! We are all rooting for you!
Good Luck!
Saysusie

laney75
07-14-2004, 07:15 PM
I won disability for lupus. Once when I was 22. It took a lot of work - but finally we got it. I had to sit in a trial with my attorney, a judge, and someone representing the state telling all the jobs she thought I should be able to get. They were crazy jobs like school bus monitor and stuff. Anyway - I ended up winning. I got very little per month, but I did get retroactive pay. So all of that got me through a tough time.

When I was in California, I got disability as well. I had a seizure and was unable to work after that. California is much easier to get disability because there is a tax taken from your pay for the state disability tax, so if you have put money into it, you are allowed to use it if needed. I got that for about a year - and that was a much more substantial amount.

Both times, though, I had to have a huge stack of forms filled out by both me and my doctor. I know most dr offices charge a fee - around $25 to fill out the paperwork.

I was lucky to get a good attorney who really fought to understand lupus and explain to the judge how misunderstood the disease is. He had a lot of my medical records outlining the miriad of issues I had gone through.

Anyway, best of luck. I know it's very difficult for lupus patients to get disability, but it CAN be done. I'm proof!

Hope everyone is well!

Take care,

Laney

carlau
07-14-2004, 10:45 PM
I went to my attorney today and although he is listed on the board of the lupus foundation he seems to have no undestanding of lupus whatsoever. and he has not read ANY of the reocrds I ahve sent him. My trial is Friday. He was rude to me, rude to my friend and reduced me to tears in the meeting, which is unusual for me and humiliating. he took 4 days to returns several calls from me last week. He clearly is uninformed about me, my illness and my case, and does not have any concern for me as a human being. I am wondering if I should ge tthe trial postponed until i can find a good lawyer.

I assumed because he was on the lupus board he would know about lupus but he doesn't not seem to. it seems to jsut be a place to stick his name so he can get referrals. i am extreemly upset and siappointed. he filed an appeal, the basically kept telling me i had to wait for a trial and was not interested in discussing my case until 2 days nbefpre the trial. i have waited 21 months since my 2nd denial for this trial to come around and i don't want ti to be blopwn because of his carelessness and indifference.

any advice????? should i postpone?

Saysusie
07-19-2004, 06:41 PM
I. personally, would find an attorney who (at the very minimum) listens to me and knows what I am talking about. If you go in with an attorney who does not care, you may as well go in by yourself.
You have a right to find an attorney who will fight for you!! If your representation is not adequate...find one that is!!!

Best Of Luck
Saysusie

carlau
07-19-2004, 09:15 PM
hey all
well my lawyer has a terrible "bedside manner" but once i saw him in action i sort of get it. he doesn't really study the case til the day before but seems ot be able to find the strongest points adn he does argue them to the judge. so even though he said he was not serving as an advocate, he did, and he did well, as did i. so... waiting for good news. thanks for the sounding board. i'm pretty high strung so i tend to get really wound up about things and worry a lot. i could go back on the neurontin for htat but it gives me really bad tremors and that sucks when trying to play guitar.

so i'll stick with my nail biting obsessiveness and driving my friends crazy at time, for now. til there's a better drug or i learn to meditate or something.
carla

Saysusie
07-20-2004, 10:08 AM
Carlau:
I am glad that your attorney isn't one of those that we hear so much about. Most attorney's, themselves, may not know all about their client's subjet matter. But, if they are good, they have staff members (para-legals) who do the research, point out the fighting points and provide them to the attorney for use in court.
We have links on this site for meditation sites, CD's and techniques. Perhaps they can help you reduce your nail biting a bit :lol:
In the meantime...best of luck to you and keep us posted!

Saysusie

Missy
07-20-2004, 07:34 PM
Carlau:

I would suggest Yoga and meditation also (and not just for the nail biting :lol: )

I, also, was very Type A personality and "high strung" - oddly enough, Lupus has actually given me a gift, in that I've focused more on my mental health and outlook and really slowed down and have more perpective now. I know it might sound cliche, but I'm happier with the person I am now.

The cool thing about meditation is that even starting with 5 minutes a couple times a week, or using a guided CD can really help your outlook. And Yoga really helped for me. I do Kripalu, which is very focused on what's right for each person, not getting the "perfect pose". Also, my teacher has RA, so she has lots of ideas for ways to modify poses for comfort. In the town I used to live in, one organization offered a few free classes a week to those in chronic pain. I thought that was cool, even though I didn't have Lupus then.

Well, Good luck with everything!

Missy

carlau
09-13-2004, 11:06 PM
hey all
first to john who started this thread
i am playing the guitar. I mentioned before i am also a pro musician, had a stroke and had to re-learn to play! this will not happen to you most likely, unless your kidneys get involved, so get your regular bloodwork just to be careful.

HOWEVER i have started taking fish oil again and it is REALLY HELPING with my inflammation, so i sought out your thread so i could share that with you befcuase i had forgotten how effective it is both as an antiinflammatory and a mood regulator. and it's pretty inexpensive ($10 for 2 months' worth) and widely available.

as for my disability i won the trial but now there's yet more hoops ot jump through. i can't get through on the phone and i have to reply by 9/17 (3 days from now) or i will lose my SSI. i had my trial in FL b ut am not around because i evacuated! boy this thng just keeps throwing up hurdles at me!!!! yagh! let's hope this is the last snag and that i get it resolved successfully.
Carla

carlau
09-13-2004, 11:09 PM
i found small parrafin wax baths for only $10 at bed bath and beyond!

Saysusie
09-18-2004, 08:32 AM
Carlau;
Please keep us posted and we are keeping you in our prayers. Florida seems to be getting no releif with one hurricane after another!! Let us know how you are!

Saysusie

carlau
09-21-2004, 03:44 AM
I evacuated! I'm fine- thansk for asking. been trying to touch base with all my friends to make sure they survived. many lost trees and power and phone for a while, can't be fun in the heat!!!

i've been in south florida, east coast, and that area has been spared the worst of it all. all the same, i wasn't around and I'm sure it was scary. i live in someone's spare room, so i don't hav my own property to be concerned about- though i often wish i had my own place, it feels like a blessing not to be maintaining one in hurricane alley this year :)

Saysusie
09-21-2004, 08:38 AM
Carlau;
I am so glad that you are OK! I hope that your friends are also OK!
Stay Strong :lol:

Saysusie

BetsyBuddha
03-18-2005, 07:06 PM
I, too, play the guitar and I was diagnosed in 1995. I use the disease for material and as far as SSI goes I have SSI for Fibromyalgia and Lupus. It;s only 550 dollars a month and they have been trying to take it away I have to go to trial on April 16th wish me luck....

carlau
03-19-2005, 12:11 PM
hi there
i've only been only disability for a few months- had to wait 3 years for it to go to trial and then more waiting after that.
how often do they have you come back and re-testify?
Carla

Poncho
06-26-2005, 01:04 AM
Hi, I am not a professional guitar player but I have played my share of musical instruments over the years: trumpet, coronet, baritone, acoustic and electric guitar. Yamaha has come up with a guitar that doesnt use frets or strings. You can use a pick, strum, download songs to it and also write your own music and use it on your computer. Its called an EZ something sorry not good with the exact name but I saw it for sale on QVC for $219. Maybe you can use it in the band the only problem with it like all guitars is you still need to do the finger placement, but at least this gives you an option other guitars don't without the strings and frets they caused me the most pain. It also comes with a speaker and uses a battery. It looked like a great option. I hope it helps John and others.

Poncho

hatlady
07-02-2005, 12:51 PM
:D has this been a great thread!

Welcome john, I'm not a musician, but....I like listening? :wink: I grew up playing piano, folk guitar and classical guitar, but haven't played any of them for years. But once bitten, we all must keep music filling our souls, in some form, don't we? Anything from folk to jazz, to rock, to classical to opera works for me.

One thing I've noted come up again and again is food allergies. Haven't been tested for any, but it sounds like we all should do that.

I also swear by fish oil, or flax oil if you're fully vegetarian. I believe it has helped with inflamation - which equates to PAIN - and is is low cost as well.