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Joelf

Amanda Thorpe's Blog: Sleep, eat, repeat!

9 posts in this topic

Here's an extract from Amanda Thorpe's latest blog:

Sleep, eat, repeat!

 

The last two years have been, quite frankly, terrible. 730 days of sleep, eat, repeat.

To recap for you, I was diagnosed with diffuse systemic scleroderma in 2007, heart involvement nearly "took me outta the game" in 2010 (I reckon my foot ulcers begin around then) and I had 3 episodes of cellulitis within a 5 month period, consequently landing in hospital twice, the last time suffering an acute kidney injury and a bout of colitis. Needless to say this isn't a complete list, rather, a summary of the salient points, the magic moments memories are made of.........Read more!!

 

As always, Amanda's blog is well written and thought provoking and I know that you will all enjoy it as much as I have. :yes:


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Her story gives me hope and tells me to never give up.

 

Thank you.

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Hi Amanda,

 

I just posted my shortest post ever in honor of this blog.

 

As you know, I spent one year bedridden in the 1990s.

 

Reading this, I'm counting my blessings that it was only one year. I know firsthand that horrible, sinking feeling of wondering if it will ever end. Or how.

 

Welcome back!!! This is worthy of a Sclero Happy Dance.


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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Amanda,

 

I am so glad you are doing better!! I have always heard about flares but wasn't sure exactly what they were, how long they lasted, etc. It is so encouraging to know that even as severe as yours was you can pull through it.

 

I am hoping that is now what I am going through lately. I told my husband the other day I feel like it is starting all over again. 

 

miocean


ISN Artist

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Hi all,

 

Seems to me that I get 'flares' or something like that.   I will jog along for ages, more or less the same then all of a sudden something goes very wrong.

 

So far this year I have had several episodes of bleeding internally, have had the whole gamut of investigations, Gastroscopy, Colonoscopy and Enteroscopy and each time some areas pf bleeding were found and cauterised.   Now that seems to have stopped and the Anaemia I have had for the last year or so seems to be reversed.   So strange to have bloods come back better than before instead of worse.

 

Now I am 5 weeks post op after a Mitral Valve Replacement and Pneumonia which had me in hospital for 3 weeks, but all of a sudden I have noticed my breathing has improved.   Still very tired but I can feel the difference.   I am telling myself now that I am coming out of it!!!    Just hope I am not kidding myself.

 

My wheelchair has been unused for 6 days but I suspect I will need it tomorrow when I see the rheumatologist at the hospital.   It is SO O O far from the car to the clinic and my walking is still not that steady.

 

Maybe it is in the stars or something Amanda?

 

Judyt

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Thanks ladies, I want you to know that you played a very important part in keeping me sane!

 

It's impossible to express or to explain the role this organisation and therefore all of you play in supporting the scleroderma community.

 

Take a bow, one and all!


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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Miocean

 

I am sorry that things are not going well for you. It's so hard when things start to go wrong again. Especially as we've no control over it, suddenly the lights are switched off!

 

Please keep us posted, you're one of us forever.

 

Take care.


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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Hello Judy

 

I am also sorry that things aren't great for you either.

 

Scleroderma, without a doubt can wax and wane. Whether it's considered a flare medically is another matter as I've only ever heard that it plateaus after 3-5 years. Maybe that's localised as I know of no one with systemic who had experienced this and it certainly ain't my experience!

 

That would mean we'd all improve after a few years or stop getting worse. Really?

 

Anyways, I am sorry you're also going through the wringer. You are also one of us forever so keep us posted.

 

Take care.


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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