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#1 gordon



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Posted 25 May 2007 - 10:01 PM

Hi Gordon again
I've just finished my three day steroid coarse, feeling a bit full today but im feeling very positive. I've also started my methotrexate injections. I've a long way to go as I will be injecting for anything up to 2 years. I have my meeting with the heamotology about the protein levels in my blood on the 4th june have to see what they have to say. I would like to say a very big thank you to all the support I have recieved from this wonderfull forum, I have with your help enlightened my consultant into the complex condition of which we are going through in differant stages and forms. mine has been diagnosed as local scleroderma mutiple morphea. ive learnt some long words in the past few months. I havent been in this forum long and have already met some wonderfull people. I was put at ease very quickly and as I mentioned im feeling very positive :D it had affected my family as a friend of my partner was told by an untrained doctor I had slow death syndrome--how uplifting is that? to any newbee who has found this site you have come to the place where the people here just uplift you with there love, help and comments. dont be affraid to ask anything. im fixing a puncture on my bike today to start getting fit again and start looking forward. take care, speak soon
very fondest regards
gordon x B)

#2 CFMBabs


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Posted 25 May 2007 - 10:11 PM

To be told you have a slow death syndrome must have been very distressing for you and your family, I know people with different types of sclero who have lived a very long and relatively good life. I'm so pleased to hear of your positive outlook-- it's the one thing that get's you through! I always think of other people, not necessarily with sclero who are far worse off than myself, of course I can also think of others who are much better off than me-- but there you go!
When sclero becomes the main purpose in your life then I guess you have to worry! I gave up worrying when it threw up it's worst problems right in my face. I came through that and I'll keep getting through whatever it throws at me hence on.
It's wonderful that you have found us and now belong to a family of fellow sufferers who not only understand what you're going through but share your problems on a daily basis.

My very best wishes to you

#3 jefa


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Posted 25 May 2007 - 10:11 PM

So glad to hear from you, Gordon. I am pleased that your participation in the forums has had such a positive effect. Good luck with your treatments and keep us posted on your progress. Ejoy the bike riding as well, but don't over do it.
Warm wishes,

Carrie Maddoux
(Retired)ISN Sclero Forums Support Specialist
(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

#4 WestCoast1


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Posted 25 May 2007 - 11:58 PM

Hello Gordon,
Thank you so much for letting us know how you are. It sounds like you are feeling just a bit better these days....glad to hear it!

Its a good idea not to listen to any negative feedback, just go with how you feel and enjoy each day. A bike ride sounds perfect for this time of year, you have inspired me to do the same! :)


#5 Sweet


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Posted 26 May 2007 - 05:16 AM

Gordon, you sound wonderful! What a great attitude you have. That can make all the difference in the world.

I'm glad things seem to be going well, I will be thinking about you.
Warm and gentle hugs,

ISN Support Specialist
International Scleroderma Network (ISN)

#6 janey


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Posted 26 May 2007 - 07:14 AM

Ditto to everything that has already been said! We are as happy for you to be here as your are.

Hey - no worry about the methotrexate injections. I did them for 3 years. Pretty good for a person that absolutely HATES needles. My husband gave them to me for the first month, then I kicked myself for being such a weeny, and one Sunday went in the room by myself and just did it. It was a piece of cake.

Thanks for the update! Hope to see you on the board often. Your experience and change in attitude is an inspiration to us all!

Big Hugs,
Janey Willis
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