Quality of life was How long have any of you been able to work after a

[Guest guest]

Tracie wrote:

When I had to throw in the towel, it was to prolong my quality of life not just

for myself but for my family.

Tracie,

Thanks for writing that line. Right now I am out on short term disability, and

am thinking it's time to throw in the towel. We get so determined to work and

support ourselves, that we forget everything else that makes life worth living.

The most depressing thing about RA for me is that I have given up all the art

work and crafts that made me happy. I work in glass and fiber, not being able

to blown glass anymore was a given, it is a very labor intensive artform, but

when I could not hold a wire to make a bead while sitting at the torch I went

into the house and cried. Pinning together pattern pieces for sewing, meant I

would have pain for days after and that was given up a couple of years ago.

Embroidery and lacemaking are a thing of the past as well. And here is

something most of us with RA don't think about; It was the years of overuse of

my hands at work that caused the majority of the damage to my hands. Not the

RA. Yes, RA has damaged my hands and feet, but almost 20 years of handling

casefiles weighting up to 15 pounds, and typing all day. I am responsible for a

unit of workers with a total of 1,600 cases, I could moved a couple of hundred

cases a day at end of the month with the average weight of about 5 pounds.

Carpal Tunnel is very common in my office, and I have been approved for

treatment by worker's comp already. But that was before I had a bout of Septic

Arthritis in my hip joint, whoa and I thought I knew PAIN. I am recovering from

the surgery now, and to think the surgery I had planned for the summer was to

get my hands back in some kind of working order.

So, the balance between quality of life and working to maintain a life is taking

on a new meaning for me. I like my job and the people who work for me and our

clients, (management, not so much). I am lucky enough to have a disability

retirement available to me, while waiting for SSA disability to come through. I

also know that if I do not do something soon, I will not be able to do anything

either for employment or for being able to enjoy life.

Oh, and so you know, I am 46, 47 next month, been dx with RA since 2000, but

know the symptoms started years before that. My Rheumy is re-thinking my dx as

she thinks it may be a different type of RA. I have tendonitis, synotendontitis

in my both hands and thumbs, and calcium crystals in my tendons throughout my

body. Yeah, I just hurt most days, and as far as working throught the pain

goes, I try to keep my sense of humor and ignore it. Not that that works, lol,

but I try. I had a nurse sit with me at the hospital and talk about treating

pain a bit while at the hospital. Apparently, I am so used to pain that I don't

do anything about it until the pain would put a normal person down. The

hospital I go to is big on pallitive care, that is pain management and

treatment. So if you are having problems with your doc, ask him to refer you to

someone to talk about pallitive medicine or care.

I have spent the last few years with friends asking me how long I was going to

be able to continue working. They have watched me decline, and are asking me to

go on disability so I will still have a life. So, work is going to go on the

list of things I used to do very shortly. I mean what good is being able to

work if I can not do any thing else? My house is a mess, beyond the health dept

knocking on the door. Friends come in to clean. Not only can I not do any art

projects, I can't hold a book to read without hand pain. I only went to work

half the time last year anyway. May as well not work.

PS, Another factor is both of my parents had RA, my mother died at 52 and my

father at 63. More and more I see the same things happening to me as happened

to my mother. Yes, we have new medications for RA. I've tried most of them.

Yes, having parents dying from this is scary, but I did learn from my mother. I

learned from her to enjoy everything in life and to laugh. My father on the

other hand worked almost until he died. Big Lesson here, the company when on

without him as if he was never there.

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