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


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15 replies to this topic

#1 miocean

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Posted 16 March 2011 - 10:08 PM

: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
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#2 Joelf

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Posted 17 March 2011 - 01:50 AM

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:

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#3 kramer57

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Posted 17 March 2011 - 06:41 AM

That is amazing! I'm so happy for you!

Karen

#4 ladyhawke

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Posted 17 March 2011 - 09:56 AM

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.

#5 Sweet

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Posted 17 March 2011 - 11:47 AM

Woohoo!!! You go girl!!! :emoticons-line-dance:
Warm and gentle hugs,

Pamela
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#6 Amanda Thorpe

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Posted 17 March 2011 - 12:31 PM

: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?!
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#7 Snowbird

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Posted 17 March 2011 - 03:37 PM

WOW Miocean, that's terrific news!! :emoticons-line-dance:
Sending good wishes your way!

#8 kris52770

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Posted 17 March 2011 - 06:19 PM

Wow that is fantasic news. Congrats

#9 enjoytheride

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Posted 18 March 2011 - 12:42 AM

I'm so happy for you= thanks for sharing the good news.

#10 erika

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Posted 18 March 2011 - 04:30 AM

Hi Miocean,

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

Erika

#11 Robyn Sims

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Posted 18 March 2011 - 06:24 AM

Congratulations!! What a wonderful result.

:emoticons-group-hug:

#12 miocean

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Posted 18 March 2011 - 09:46 AM

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:

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#13 debonair susie

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Posted 18 March 2011 - 12:20 PM

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,

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#14 erika

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Posted 21 March 2011 - 10:31 AM

Miocean,

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

Erika

#15 KayTee

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Posted 24 March 2011 - 06:24 PM

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

#16 Matilde Acosta

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Posted 25 March 2011 - 08:48 AM

Hello Miocean

I love your optimism, your faith and positive mind, those are important ingredients to stay in the fight with our friend inseparable scleroderma.
You keep improving and get a big hug