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Hello

 I hope you dont mind me emailing you.  i am an OT and at present have just started a new post in a hospital setting (england) and am looking into setting up services for people with conditions such as RA.  I was so glad to read your message in that you are finding occupational therapy useful.  You are right it is hard to explain what an OT does but it does help.  What i would be looking at is hopefully setting up some sort of education group for people and evaluating how people find this type of intervention in other words feedback from patients on how OT has helped them with their activities of daily living.

Hope you wouldnt mind telling me what specific interventions have helped you as one of the things i want to look at is getting people back into the working environment (you mentioned vocational rehab).  We need to prove OT does work and one of the ways of doing this is by feedback from patients who use OT services. 

Have you had for examples advice re carrying out activities around the home or in the workplace or relaxation techniques/coping strategy education etc. and if so how have you found this.  Has there been anything (In particular) you have had difficulty with.

Once again hope you dont mind as this will help me in my job to tailor the service to meet patient needs.

Thanks again.

Jackie Smith 

 

 

 

 

 

My JRA was diagnosed when I was 7; I'm now 61.  They knew very little about the disease or how to treat it at that.time.  Prednesone was the treatment of choice.  I completely agree with Becky, RN; you must have a well known Rheumatologist treating you!  By age 9, I was forced to drop out of school and had to be tutored at home the pain was so incredibly bad.  The diseasce progressed so rapidly that I can remember that I had joints that would fuse over night.  The natural thing to do is to not move if you are in pain.  I can't stress enough to you that you need to keep moving.  To help you with this, it's essential that you have to be in a therepy program in addition to pharamceutical intervention.  Get a referral from your doctor and also make contact with the Arthritis Foundation Chapter in your area.  They will be a wealth of information. 

By age 16, my JRA had already done a great deal of damage and I have spent most of my life in a wheelchair.  It has been dorment since then from a several week, very painful, treatment of Gold shots.  I've had a very challenging life making the adaptations necessary to function at my highest capacity, but it also has been a very full, productive, good life that I'm very thankful for .

If you ever have any questions, please feel free to ask me. Good luck to you.  Just remember, life isn't over just because you've been diagnosed with JRA.

Linda

Linda.......that was a wonderful......clear insightful.......truthful post about acquiring RA at a young age.......and dealing with it. I think treatments have improved since you were young. but............... what struck me about your post was the asserton that life can still be good......even great.........and that there is indeed..........hope............thank you........peace and love

 Ditto for me too. Jamie

I can kind of relate due to being 16 already having CP and being diganosed with Dystonia.  I felt I am so young, how am I supposed to do this?  I felt hell I got sick the day after my 16th Bday, I  didn't  even have a chance to get a tatoo before I couldn't due to fearing it will set off my Dystonia..

 Two peices of Advice:

 1. This will pass-freshman year of college, it all started to really stress me out!!!!!!!!!  BUT two years later after I transfering, I started to do lots better.  My emotions regarding my legs settled and  my fears faded lots.  I started to finally live just a normal life of a college student.

2.  If it becomes to much, talk to someone!!!  Looking back to the first year of college I should have been talking to somone about my feelings.  Not just trying to pretand I am fine and only thing that matters is my GPA

yep. You definitely need to be undergoing physical therapy! That's the first thing you need to ask yourdoctor; see if he or she will give you a referral for therapy. At least, that's how it usually works with me . Good luck, and hang in there!I'm no doctor , but I've had enough experience with pain - you'll have to get used to it and continue taking your meds. That's what they're there for.Especially, yourpain meds.GOODLUCK