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quiltfairy

Saying.

7 posts in this topic

I heard a saying on TV tonight about how we work together to help each other out and I thought it fitted all of us.

I hope we can all work together at educating people and to get enough donations to find a cure.

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A cure sure would be a great thing, no more people suffering the shattering effects of this disease on their lives and the lives of their loved ones. 

 

I do wonder how it would help those of us already living with the disease? A cure would not reverse the damage done to our bodies, at best it would stop us from getting worse but it wouldn't give us anything back or would it? Now, if you're reading this and thinking "total bummer, shut up!" remember it's just my musings. I do wonder if a whole lot of additional good could happen if there was some monetary focus on practically improving the lives of people already living with scleroderma. Here in the UK there are cancer charities that focus on exactly that but not one scleroderma organisation exists anywhere solely for the purpose of practically improving the lives of people living with it. 

 

How many of you, post diagnosis, were left to get on with it after an out of date leaflet was shoved into your cold, stiff hand, yes I know that sounds corpse like but think sclerodactyly plus Raynaud's. Imagine a leaflet for an organisation that provided free counselling for you/loved one, a nursing team, financial aid, information about work, benefits, disability rights, mobility aids to name but a few. When I was diagnosed there was no local face to face support and I didn't even know that my National Health Service (NHS) has a Wheelchair Service until after I had bought my first manual one and was already talking to a charity about getting a powered one, I'd been using a wheelchair about 3 years by then. For those of you abroad, the Wheelchair Service assesses the need for and provides wheelchairs but it's proper poor, it's been known to take so long to provide a chair that by the time it has the recipient already succumbed to their disease! The NHS has improved some of its targets, for example the time you wait for initial referral or cancer care but typically disabled services are still a shambles! 

  

Anyways, back to scleroderma, most people stumble around finding bits of help here, some there and for many nothing at all. I found most of my support via sclero.org! Yep, most of my support comes from an organisation that's not even in the same country as me! It's a good thing that the support and the information here are first class for sure. A cure would be great, of course it would and we should never stop working for one, but to me it seems to be pursued at the cost of something equally as important. Personally I'd like more.

 

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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I understand and I get frustrated at times because the only information I have gotten is here on this site; I would at the least like to be a member of a pain management group. I have tried the pain clinics and all they want to do is put injections in my spine which do no good and mask everything worse. The doctors don't even understand this disease; I hear about cancer all the time on TV and I hear about helping our service men that have come home, but there are many other diseases out there and what about the people that are injured on the job at home? Are they not just as important to our country? I think not.

 

This all started with a work related injury; I had to pay an attorney big bucks just to get the medical attention I needed and to get the financial help I needed. If workmens compensation had kicked in right away I might be back at work, but I had spinal fluid leaking that caused severe headaches for so long that they now will never stop. Workmens compensation would not let the doctor fix all the problems with my neck, just the basic put it back together that took a year. My doctor said sorry, but you will now be disabled for the rest of your life because nerves were pinched too long. It then took me three years to get social security, meanwhile I had no medical insurance so most of the doctors would not see me. I could not get any medication because I had no money; it just goes on and on.

 

Amanda, I think you hit a nerve, thank you.

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Sorry QF, that's rough, really rough. Don't you sometimes feel like your life has become the stuff of the daytime TV movie? That you're in some true life, made for the small screen drama, struggling through injury and injustice, disability and disempowerment to just die tragically at the end? I certainly did post diagnosis because my life had and was changing so unbelievably that most people had no idea and nothing in common with me anymore.

 

In reality most people will only ever read or watch the challenges we face daily, played out by actors. After all, it's not like these awful circumstances befall real and wholly ordinary people. Is it?

 

Well QF, it's a good thing that you're so tenacious, as it happens many with scleroderma are.

 

Now would someone please get that camera outta my face!

 

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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