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Home » Juvenile Arthritis » Young Adults » No one understands...being an artist with JRA...

No one understands...being an artist with JRA... Expand / Collapse
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pollielobster
Posted Tuesday, May 15, 2007 11:20 PM


 

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Last Login: Tuesday, May 12, 2009 8:27 PM
Posts: 10, Visits: 5
*sigh*

I'm a newbie to the forums and whatnot. I'm glad I stumbled upon this site. I can make many friends who know what I'm going through. My name is Lydia. I'm 23, and an animator at an art school. Currently I'm in Savannah, but I'm from Va.
I have many friends, but none of them understand why I wear braces to class, or why I draw even if my wrists hurt, or its hard to hold the pencil/mouse. I think most of time, they get annoyed from having to wait up for me all the time walking at my pace, or that I cant do everything they do. And its not like it was alway like that. Even though I've had this since I was 11, it didnt seriously flare up all the time until I was in my junior year of college. So they knew me before it was bad, and I'm getting sick of them complaining that arthritis isnt for young people, and for me to stop making excuses all the time.
I dont give up, things may be hard now, but I'm still trying my best. Doesnt that matter? I'm sorry...

I just want to talk with others, make friends. Friends that wont try to take advantage me because I have no grip so I cant defend myself. People that will accept me, we can take, and hang out no matter what.
I hope joining this forum will bring me that. I cant get any of that from home, and the only friends that do are states away.

Is that okay with anyone here? I'd love to get to know all of you if I can. Hope all of yall have a great week! Cheers!

Lydia
pollie_lobster@yahoo.com
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Sugar
Posted Friday, June 01, 2007 12:30 PM


 

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Last Login: Thursday, July 31, 2008 1:08 PM
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Hello and Welcome! I've been signed up here for awhile, but I haven't really posted much until now. I'd like to tell you that I'm pretty much in the same boat as you.

My name's Tracy, and I'm a 22 year old Art student {also interested in animation} I had horrrible arthritis in my hands for years {since I was 14}, and it hurt to write, to draw, to do so much as pick up anything... lucky for me, the arthritis in my hands went into remission, but flared up 10-times worse in my feet and hips. So, much like you, I'm always trailing behind my friends. and They never say much, because they've seen how bad my swelling gets, but I feel bad that I hold everyone up. Although my friends seem to understand, It's still hard to talk to them about it, because they don't know what it's like. {I think I have my worst issues at work, when they have me constantly on my feet for 8 hours straight} the management doesn't understand ~_~

But yes! I'd also like to get to know new people and it'd be nice to talk to someone else who understands what I'm going though

it'd be nice to talk more, and I hope you have a nice day! Take Care!
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MrsP
Posted Friday, August 03, 2007 10:32 PM


 

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Last Login: Thursday, July 31, 2008 1:16 PM
Posts: 15, Visits: 0
Hi. I am 23 with RA and I am a dancer. I too understand the frustration. It's not that you want sympathy, You just want understanding. Is that too much to ask?
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Sugar
Posted Friday, August 17, 2007 12:02 PM


 

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Last Login: Thursday, July 31, 2008 1:08 PM
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It seems to be quite a few of us in our early 20's it's nice to know I'm not alone.

to mooshinier: It seems you and I are quite similar! and they put you on Enbrel? Is that also shots? They put me on Humeria, also after a slew of other meds and test, Thank goodness for some of these miracle meds! now if only they could come up with a cure ^_^

to MrsP: Oh yeah! I took a ballet class, and that was the harrrdest class I had that semester! {People criticized me for taking it, but I wanted to, to keep me moving and active} but I agree, it's not about the sympathy, it's about the understanding! fortunately my teacher was understanding in that I couldn't do everything as it was supposed to be, but still gave me an A.
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Lynnebug
Posted Thursday, October 25, 2007 2:17 PM


 

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Last Login: Monday, April 20, 2009 10:48 PM
Posts: 6, Visits: 2
I'm a 44 year old lady with PSA, and I had to give up playing the oboe a while ago, because arthritis in my hands and wrists made it impossible for me to make reeds, and play.

I miss it terribly. I was very very proficient, and played a lot and enjoyed it. Now I've lost the social and emotional outlet that music provided. I'm trying to find something else to use as an emotional/social outlet, and am thinking that I might take some photography classes, but it is very very depressing when people want me to play and criticize me (like the people at work who want me to play in the office talent show and badger me incessantly). It is a compliment that they enjoyed my past performances, but it's also a reminder of what I've lost.

It depresses me a lot to have lost this.
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jms59
Posted Wednesday, January 02, 2008 11:42 AM


 

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Last Login: Thursday, July 31, 2008 1:19 PM
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Lynnebug,
I would tell your coworkers that their comments bother you. They might not realize. Photography is great. Something else you might try, even though it sounds kind of silly, is foam houses. This Christmas I was having a bad flare up and I couldn't do much. I got these kits from Michael's craft store where I could build a little Christmas village. They came with all the pieces and everything I needed. They were so easy to put together and they were really helpful for taking my mind off of my recent diagnosis. I messed with them for hours and they didn't really hurt my hands. It gave me something to do and concentrate on and they turned out really cute. I think there are different ones for different seasons, like spring houses and stuff.
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Lynnebug
Posted Thursday, January 31, 2008 5:33 PM


 

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Last Login: Monday, April 20, 2009 10:48 PM
Posts: 6, Visits: 2
Right now, I'm completely at a loss. I just started work again after being on disability for 3 months, and it has been a complete and total fiasco. I came back to 3 months of work because none of my work had been reallocated, looming deadlines days away and lots of extra demands from the boss. I've had a lot of increase in pain, and am having trouble keeping it under control and finding the pain medd I need from the pharmacy. I'm getting very little support from family and friends qd because of insurance issues have had to change insurances, and am having serious financial issues. Right now, I'm ready to give up. I an't keep body, soul, finance, and emotions together right now.

I'm trapped in the job even though it's a terrible organization, because I have to have the health insurance. I've always felt that ANY job was better than no job, however, I'm feeling differently right now! How do others cope with this situation????
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Stephanie86
Posted Monday, March 17, 2008 3:20 AM


 

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Last Login: Thursday, July 31, 2008 12:46 PM
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Lynnebug,

Have you ever tried music therapy? I don't know if it's available in your area, but there may be music therapists who can help you find a musical outlet using adapted instruments that would work with your hands. (email findMT@musictherapy.org to find one). You could always try choir, too, if you enjoy singing at all. It's still music and still a social and emotional outlet.

I had to almost give up playing my cello for a brief period of time while my meds weren't working and though I would lose my mind. I was doing my student teaching in high school and elementary school orchestra at the time (and preparing for a senior recital), which made it really difficult. Luckily I am better now and still teaching and performing, but there is a limit to how much I can practice and play in a given amount of time.

I understand the health insurance thing....my job search was largely influenced by it. Luckily I found a job I love with good insurance. Sorry to hear you are in such a tough situation....good luck!
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Keith99
Posted Monday, March 17, 2008 4:46 PM


 

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Last Login: Wednesday, August 06, 2008 2:53 AM
Posts: 22, Visits: 1
Hi Stephanie,
Sorry to cut in on your conversation (sorry Lynnebug), but you addressed something that I'm now coming to terms with. I play the guitar and piano and have recently learned, after many hard-headed attempts to prove otherwise, that I can only play for a certain amount of songs. For the guitar, the number seems to average around 4 before my fret hand seizes up. Piano, I can go a little longer, but have to be mindful because the pain in my knuckles can sneak up on me and last for long after I move away from the keys. Anyways, I love music and still hold on to the dream of performing with a band again once I finish grad school. Maybe I can land a gig as a front man and just play the guitar or piano for a couple of songs in a set. Best of both worlds then. Just amazed at how I went from being able to play for hours to now what seems like such a short time. Again, sorry for cutting in on your conversation. Thanks for bringing the music up. Awesome that you play the cello. Love the strings in the orchaestra.
Keith
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Stephanie86
Posted Monday, March 24, 2008 1:47 AM


 

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Last Login: Thursday, July 31, 2008 12:46 PM
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Keith,
I know how it goes about not being able to play for long periods of time! I just got done playing a Messiah festival (Handel's Messiah and the Bach St. Matthew Passion) and was just about miserable at the end of the Handel today....hurt to drive! The cello has a whole bunch of solo/continuo parts in this baroque stuff, so it was two continuous hours Luckily I was only a section cellist on the Bach...it's three hours long!

Good luck finding gigs! Since you double on instruments you've got a lot going for you...I bet you could find one pretty easily
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Keith99
Posted Tuesday, March 25, 2008 10:52 PM


 

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Last Login: Wednesday, August 06, 2008 2:53 AM
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Stephanie,
Wow! You're very talented to play those pieces. And two hours? Do you find that, while you're playing, you make a decision to continue because the pleasure of music outweighs (at least for that moment) the inevitable pain? I find myself doing that quite often. However, since my body decided to do its latest trick of having my fret hand seize up, I'm not able to make that decision quite as often. But I get such a rush from playing that I seriously overplay knowing well ahead of time that I'm going to hurt. Just something about being in that moment that is such a nice diversion from the pain; even if it is waiting for you to put the instrument down before it makes itself at home
Keith
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Jacqueline85
Posted Friday, June 06, 2008 6:01 AM


 

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Last Login: Thursday, July 31, 2008 12:50 PM
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Wow I completely understand your circumstances...I feel alone to at times!! Riddled with pain, people who dont have RA are stupid.. They think it is an old persons disease and it really does not hurt all that bad, your just faking or complaining!! they say stupid things like just take some noni juuice you'll be better..Whateva My reply is to break that stupid noni juuice bottle over their heads. Really if I ever meet the inventor of that fake crap.......But any way I am artist to I am Animator, Graphicdesigner/webdesigner & my hobbies are designing and making clothes & painting...You see my hands and arms are my livelyhood. It's hard when your brain can give orders and your brain is telling you can do it and you feel as though you can do it but when you try, it does not correspond with your hands and arms which are locked engrossed with stiffleing, burning, tinging stiffening, locking up pain... But somehow you find a place to carry you through... OR not... I am not a upbeat liar the truth it hurts, I cry you cry, I try I am not successful so it takes me way more time then the average person and sucks ass... I cant explain it to to the other unsick humans because they dont get it.... But I am here to tell you I too AM with you inthis ugly, ugly depressing, fight even we two use are hands in similar but differant ways.....I feel your pain so dont feel overwhelmed I am right here with you...!!!..
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Sarah Female
Posted Wednesday, November 12, 2008 12:17 PM


 

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Last Login: Thursday, April 30, 2009 12:57 PM
Posts: 36, Visits: 32
you are not alone. definitely not.

i used to be the one that my mother, the slowest walker in the world had to wait up for. No longer do I really have many problems walking, or any pain unless I don't take my meds...which I like to pretend I dont have and I'll go two weeks before I feel the swelling or pain.

I'm an artist, photographer, going to college as well.. I'm 22, and all my friends know I have arthritis. I live in maine which is AWESOME considering 3/4's of the year its COLD and snowy. which is even better for arthritis...you know.

I let my teachers know of my condition just in case I get something that makes me miss classes, like I get sick ALL THE TIME because of enbrel lowering my immune system.. lovely.

my friends are more willing to help me out if I ask. it doesnt matter if i'm 22, or 80 years old..I have a disease and they can accept it or not, but if they dont understand I probably wont bother being their friend if they are ignorant to the fact that I cant move some days. or somedays i need a bottle of water opened for me because I cant get it open.

i'm a pretty open person about my RA and I'll let my friends give me my shots, I at least offer for them to so they can kind of get into my world.

I hope things are better for you! but do realize we're all here too!!!
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Emeka Banor
Posted Monday, May 11, 2009 9:10 PM


 

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Last Login: Tuesday, August 11, 2009 10:20 PM
Posts: 7, Visits: 25
my name is emeka and i have post traumatic arthritis on my right hand and wrist. I swear i too am familiar with these feelings. it's a very depressing feeling and its like no one understand. no one does, you just have to keep up keeping on. just keep talking about your problems to people, it really helps when you talk about it.
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rachrobbins
Posted Thursday, June 18, 2009 4:51 AM


 

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I just found this tonight - it's an interesting analogy by a woman with lupus of what she goes through. I think we can relate!
http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

This is only my second time to post on these forums so please excuse if I'm a little long winded. I understand exactly what you guys are going through and it is so nice that there are others who relate to being a young artist with arthritis... I can remember my joints acting weird for as long as I can remember. I had to go to the doc every month for almost a year in fourth grade to finally be referred to a specialist. My specialist always said that I was lucky I only had JRA in my knee. I was only ever put on naproxen (ALEVE) even though I spent days on crutches and even missing school. I've always been musically and artistically inclined. So the fact it was in my leg didn't stop me - I remember sitting in a chair at a choir concert once! It went into remission for several yrs, I went to college, got married, now teaching art and guess what?!? It's back with a vengeance (and I'm still only 27!). All on my right side, knee, elbow, wrist, fingers. Of course, I'm right handed!!! So I've been 'dealing' with it on my own. After my husband, friends and family all getting fed up with my limping around (I joke with my students it's my zombie walk!) and being exhausted I'm finally switching docs and going to the new one Thursday. Yay! With all the new medicines I see on tv every day there should be some kind of relief right? I'm getting fed up too - I can't draw much anymore but have taken up watercolor as it relaxes me mentally and is very gentle for my joints. And of course technology helps SO much. I find a lot of inspiration online and can create in graphics programs etc. So here's hope for some relief! I believe it is out there. If you would like send me a private msg and I will send you my email, twitter, etc. I'm all for having people to talk to in similar situations.
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