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miocean

Don't Lose Hope or "There is life After Scleroderma"

16 posts in this topic

:happy-dance: Hi everyone. :happy-dance:

 

I titled this my favorite quote from Amanda Thorpe. It helped me through some very rough times. Keep it in mind when the going gets tough, I hope this bit of news will encourage everyone:

 

Seven years ago when diagnosed with scleroderma my skin score was a 45 on a scale of 0-50. A couple of years ago it went to 28. After my kidney transplant it went to 11...then it went to 8 and now (drumroll) it is

 

3

 

miocen


ISN Artist

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Hi Miocean,

 

What wonderful news!! :emoticon-congratulations:

 

I'm so pleased for you and hope that you continue to improve at the same amazing rate!! :emoticons-line-dance:


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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That is just amazing!!! Congrats to you and thanks so much for giving us all hope! :emoticons-group-hug:


Life is NOT meant to be a struggle. Life is meant to be joyously abundant.

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:emoticon-congratulations: Miocean! :emoticon-congratulations: We go on and on and on! :emoticons-line-dance:

 

You wanna be a zero! Now where but in the weird 'n' wacky world of scleroderma would you say that of someone and mean it as a positive?!


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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WOW Miocean, that's terrific news!! :emoticons-line-dance:


Sending good wishes your way!

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Hi Miocean,

 

Wooow! As you are progressing you will soon come to zero. Has the function of your hands improved too?

 

Erika

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Congratulations!! What a wonderful result.

 

:emoticons-group-hug:

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Erika and others,

 

Thank you all. As far as my hands go, unfortunately they have worsened. Even though I have had YEARS of occupational therapy my fingers curl and I have difficulty holding things. Without the therapy I am sure they would be claws. On top of all of that my carpal/metacarpal joint (the one that connects the thumb to the hand) has deteriorated. I have to wear a neoprene splint now, am in a lot of pain, and will be consulting with a hand surgeon. I have permission from my scleroderma specialist and nephrologist to do this. It will mean, most likely, a cortisone shot or two to begin with and surgery down the road. It is one that requires a long recovery and I am not looking forward to it. I will go and have a baseline done and proceed from there. Has anyone else had this surgery?

 

Right now I am under doctor orders to rest. I have been trying to do too much. Due to a conflict between my pharmacy and my doctor I have been without my anti-anxiety medication for a couple of days and it is really showing. I hate to admit I am dependent on it but after 40 years of use I am. You really don't want to be around me now. :temper-tantrum:

 

miocean


ISN Artist

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I am THRILLED with your numbers, miocean! How wonderful that is!

 

Oh miocean! I hope that you are able to get your anti-anxiety medication SOON, as it's not good to be without it :nervous:

(I just got mine and Mom's refilled on Wednesday of this week, but was also feeling the effects of "the dropped ball" effect of the pharmacy :wacko:)


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Miocean,

 

compared to what you have been through already, hand surgery seems like peace of cake. Take care.

:high-five:

 

Erika

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Wonderful news!! Congrats on your skin score and overall improvement (sounds like a school award right?)


Kay Tee

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