Not quite a Rose but I don't like this guy either

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Not quite a Rose but I don't like this guy either

Postby Cece » Mon Apr 11, 2011 11:38 am

www.weightymatters.ca/2010/08/mss-contr ... edure.html

So to recap. On the one hand, a procedure that's experimental at best has the Premiere of Saskatchewan crowing about hope and wanting to spend money funding its research. On the other hand his province has a woefully underfunded bariatric surgery program for a proven procedure that not only increases both quality and quantity of life but also simultaneously decreases health care costs and in the long run would save the province money.
[...]
As far as the world goes, obesity is still a disease of willpower. Premieres and the public simply want to blame individuals for their weight, whereas MS is not something that a person is generally blamed for contracting.

Anyone here ever felt blamed for contacting MS? How about for being seemingly lazy when pushing through severe fatigue? People with MS do get blamed and judged and written off.

An obese person might end up in a wheelchair, but there is a path for that obese person to get out of the wheelchair. A MSer, not so lucky. I would take obesity over MS. Then I would get that proven bariatric surgical treatment and be healthy.

Two years for bariatric surgery is a ridiculously long wait, but at least there's a surgery at the end of the wait. And such a patient has the same choice that pwCCSVI have, to take their dollars and have their procedure out of the country. How did their surgery get proven in the first place? Money was spent on research? Why would we not warrant the same?
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Postby 1eye » Mon Apr 11, 2011 12:07 pm

I might be an exception. I've been both obese and inflicted with 'MS'. Ironically, I have been skinnier since heart attack, chemo, 'SPMS', and more beef since venoplasty. But that's muscle mass, mostly. Nothing like a heart attack to make you start taking eating seriously. I have always been some lazy, but never got flack for that, or for being obese. If anything, having 'MS' has won me the 'sympathy vote'.

I admit that I care more that I can't play guitar or walk, than that I can't slave over a hot computer writing C++. I think if people have the money for paying for obesity surgery or paying for liposuction, or paying for venoplasty in Canada, they should be allowed to. But that's just me. I also think that if someone has been told they have 'MS', their GP should recommend and refer them to an IR for venoplasty, and provincial health insurance should pay for it, saving public and private health care oodles. Again, that's just me. If somebody is in a wheelchair, electric or not, or in bed, with CCSVI, they should get treated ASAP. That's just me, and anybody else with any humanity or sense.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Postby Lyon » Mon Apr 11, 2011 3:06 pm

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Last edited by Lyon on Wed Jun 22, 2011 5:16 pm, edited 1 time in total.
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Postby 1eye » Tue Apr 12, 2011 7:43 am

I really didn't mean for anyone to take this as meaning they in particular had no humanity or sense, nor was I particularly worried about those humanly-challenged or sensibly-challenged, so I do apologize if I have offended them. Nothing, in fact, was intended to be directed personally at anyone in particular, but at persons in general who know who they are.

The deleted remark said something, as I recall, about my not knowing anything about humanity or sense, which I suppose is always a possibility. I was not worried about it, and it need not have been removed on my account.

"You can lead a horticulture but you can't make her think." -Dorothy Parker
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Re: Not quite a Rose but I don't like this guy either

Postby Trickenzie » Wed Apr 13, 2011 8:24 pm

Cece wrote:Anyone here ever felt blamed for contacting MS? How about for being seemingly lazy when pushing through severe fatigue? People with MS do get blamed and judged and written off.


Oh yes.

I have commented to my husband that if I had got roaring drunk, got on a motorbike and driven down the (very high) hill (we live on) in the pouring rain and had an accident to end up quadriplegic, I would get more sympathy from my family.

They don't understand MS and seem to equate it to me believing I am sick so I am sick - or worse, that I haven't dealt with serious psychological issues in my life and now they are coming back to haunt me because I never worked through them.

Sadly, some of my symptoms are cog-fog, fatigue, speech and balance issues and while I have some lesions in my spine and 15 odd in my brain, physical issues besides pain are not excessive so this seems to bear them out from their point of view.

I love my family, but by golly, they infuriate me at times.
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