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Biomarker for Diffuse Scleroderma skin has been discovered!


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Hand Therapy


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#1 barefut

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Posted 15 February 2007 - 12:45 PM

Well, I found out today that my hand therapist isn't even a hand specialist! She's a general occcupational therapist.

I like her and I think she can do good things for me but it just ticks me off because I SPECIFICALLY asked for a HAND therapist and one who has worked with sclerodarma before is possible.

On top of this, her availability conflicts so badly with mine that I haven't been able to get 2 one hour sessions/week for 4 weeks like she would like for me so I have to settle for what I can get which so far has been ONE 1/2 hour appt /week.

It's too late now to find someone else so I'm gonna stick with her for the next 4 weeks but if I ever go again I'm going somewhere besides our small town local hospital.

#2 Sweet

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Posted 15 February 2007 - 01:06 PM

Oh how frustrating!!! There is too much incompetence in this world if you ask me. I'm a bit of a perfectionist and when I ask for something, and specifically make a point like you did and then still don't get it, it really upsets me.

I hope she is able to help you however since you seem to be stuck with her. Keep us posted.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#3 kelowna52

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Posted 15 February 2007 - 02:23 PM

I'm sorry to hear your having problems with specialists. It is so hard for all of us as it is, trying to get experts who understand this desease, but to think you specified exactly what you wanted and were given someone else, is unacceptable. I sure hope in the future you can hook up with a hand specialist. Good luck to you, with this girl, I hope she can help you out at this time.

Jackie S.

#4 barefut

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Posted 15 February 2007 - 04:14 PM

I have to say that I am not upset with my therapist. I do really like her. I'm upset that I didn't get what I asked for. Now if what I asked for was not available, then just tell me! Don't try to just put me off like my request is unimportant. I have good reason to ask specifically for a HAND therapist and it's not the scheduler/receptionist's place to just blow off my request.

There. I feel better.

On a more positive note, I was impressed that my occupational therapist did a little research on scleroderma. I know that the things she's showing me and doing for me will definitley be helpful but the reason I wanted a hand specialist is because there may be things that a hand specialist knows and deals with regularly that an occupational therapist doesn't see everyday and I don't know what important little tidbit I may be missing out on.

I had my first parafin wax dip today...AHHHHHHHH! Nice. Now I just gotta plug mine in. She also used a small vibrating massager around my knuckles that really felt good and relaxed my hands. She showed me where I could buy one and now I can't wait to start an evening routine of heat, massage and stretching while I watch my junk TV.

She also gave me copy of facial exercises and she wants to work on my shoulders too. Maybe I should be grateful for not getting what I asked for? :lol:

#5 nan

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Posted 16 February 2007 - 04:17 AM

You might be right! I was upset at first that they wouldn't see me in the Scleroderma center at Johns Hopkins, but I think I ended up with a doctor that I will like better and she has more time for me because she just started out... Take Care and enjoy hand therapy. I had it after my hand surgery and it was awesome!
Nan