A Rant !

wifehasMS · Post by **wifehasMS** » Fri Sep 24, 2010 7:07 am

Sorry for this, but I have to get this off my chest.
First, I'm sick and tired of the MS Society sending all the stuff about fund raising and walks and runs, etc. I finally unsubscribed.
My wife has very advanced MS and is almost completely disabled at this point. She was hospitalized twice in the last 2 years and each time she was hours away from death because of a septic infection causing complete renal failure. They managed to bring her back both times, but in worse condition after each episode. She continues to get one UTI after another so that she is almost constantly taking antibiotics and being treated for the UTI's. She requires help with nearly everything she does. Unfortunately, because she worked hard all her life until she wasn't able to any more, and she saved a little and paid all her bills, now she doesn't qualify for any kind of assistance and her insurance will not cover it all. We have had to sell our home so that we could move to a location near family so that they could help her, but now they are getting stressed out by it too. I am at my wits end, and the MS society and all their rosy stories and requests for donations, has finally triggered this rant. I could go on about people taking advantage of, and abusing the system thereby causing those that really need help to not be able to get it. that's enough for now. Thanks for listening, and again I'm sorry, but I feel better now.

LR1234 · Post by **LR1234** » Fri Sep 24, 2010 7:15 am

Our system in the UK in general is similar, the harder you work the less help you get. I think people should be rewarded for trying to pay their own way not penalised.
I think your wife should be entitled to the same help as someone who didn't/couldn't attempt to be self sufficient.

I understand your anger!

Algis · Post by **Algis** » Fri Sep 24, 2010 7:25 am

We surely understand you... So sorry for the situation... I hope at least our children will have a bit more sense ...

Cheers; and courage!

KateCW · Post by **KateCW** » Fri Sep 24, 2010 10:09 am

I tire of reading stories about people who ski, jog, swim and "didn't let MS stop them". It makes it sound like those of us who can't walk just let it happen and didn't try hard enough

. I would like to read about people who are more disabled and how they cope. Of course no one wants to read that. How badly you are affected seems to be a matter of random fate-some are better, some are worse. It may not matter what you do or how hard you try.

erinc14 · Post by **erinc14** » Fri Sep 24, 2010 1:08 pm

I have noticed since I was diagnosed that there is is very little symphony for those with MS. And that is why the idiotic residence toward CCSVI treatment doesn't surprise me.

ppicklee · Post by **ppicklee** » Sat Sep 25, 2010 10:02 am

I totally understand. I understand all of the frustrations listed above. My husband and I are starting to laugh now at the plight some are at. We can't help it. We have somewhat of a strange and morbid sense of humor. It gets us through the crappy times. I am a quad now and I've gone through various stages. I can relate. Thank you for sharing. All of you.
Eric14 -- hi fellow Canadian. We are proudly Canadian but unfortunately there doesn't seem any treatment options for us here.
KateCw -- even when those of us are in crappyier (sp?) states it can always be better and believe me it can always be worse. Trust me.
Wifehasms -- thank you for your rant. I am glad you did it. I most definitely agree with you. It's like I said it can always be worse. Yeah I have it crappy but at least I've never gone septic. My hat goes off to you and I definitely appreciate your rant and candor.

gainsbourg · Post by **gainsbourg** » Sat Sep 25, 2010 12:49 pm

kate said:

I tire of reading stories about people who ski, jog, swim and "didn't let MS stop them". It makes it sound like those of us who can't walk just let it happen and didn't try hard enough

I know what you mean - but on the other hand it's not really the fault of those individuals who ski, jog etc. - they are only trying to make the most of things, even though they are lucky enough to have comparatively mild MS. The fact that the public and media seem to have the misconception that MS is always life threatening, or at the very least totally disabling, doesn't help because they naturally put everyone with MS in the same boat.

Fortunately, most people with MS end up getting only a mild form of the disease and yet, just occasionally, these are the very ones who wear MS like a badge to gain sympathy and attention - now that does annoy me.

gainsbourg

wifehasMS · Post by **wifehasMS** » Sat Sep 25, 2010 1:20 pm

It seems to me that MS is almost completely ignored by the media. I think because it doesn't fit into a nice neat little explanation, so they get confused and just bypass it. It's a shame that MS is not covered better so that the general public would be more aware of it and what it can do to people. Pretty much all I see is a lot of quite healthy looking people out enjoying themselves. I was totally shocked when I learned more about it. Then I also learned how nonchalant people are about it, including way too many Doctors!
It's pretty much take your ABC's and let me look at you again in another 6 months. Like an object in a study.
I read on here about the CCSVI findings and after a little while I asked her Neuro's about it for her. They said they didn't think it would be something for her. That left me cold.

Anyway, sorry, I'm starting another rant...LOL!
I want to thank you all for your thoughts and comments.

stillfighting · Post by **stillfighting** » Sat Sep 25, 2010 6:42 pm

I can sympathize with falling between the cracks and not getting any help. There is no way to pay for all of this out of pocket.
The ms society does not offer a lot for someone in that positon.
The magazine and fund raisers become well BS...

I do get your feeling's about the one's who think ms has not gotten them ..
I have my flares that have taken nearly everything I have.. I have regained a lot.. So people just don't realize... It just may not be "that med your on"
ms does what it wants "
sorry reality bites.

elyse_peace · Post by **elyse_peace** » Sat Sep 25, 2010 8:49 pm

hi wifehasms -
i certainly agree about the ms societies. sincere, but ??? what the heck. they sure do concentrate on spending the funds on print to get more $$$. and they bombard you. MSWalk??? I can barely make it to the bathroom!
and the gov't...i don't make enough SS$$ to do much of anything, but more than will allow me to qualify for any of the additional aid programs.
meanwhile, as i become less and less able to do for myself, i watch the friend who aids me struggle. even if the only difficulty was just to watch me lose ground... it's crappy.
best of luck to you and your wife. I think you should ask another doctor. I know that Barb Farrell, who could not speak or move, was able to get the Liberation Treatment for CCSVI, and she began seeing improvements. She is now in a facility where she is getting help. So if someone has written her off, please ask someone else.

stillfighting · Post by **stillfighting** » Sat Sep 25, 2010 8:57 pm

the ms society will alway help you get a cane, wheel chair...
and let me say this just for those that think that think CCSVI is where is all is.

well it is not an immediate answer to people's problems.

wifehasMS · Post by **wifehasMS** » Sun Sep 26, 2010 5:57 am

stillfighting wrote:the ms society will alway help you get a cane, wheel chair...

My wife needs a power chair that has tilt for pressure release. The dealer wanted about $12,000+ for it. When they found out my wife didn't have Medicare part B, only partA and her med insurance from her work, then they lowered the price to $7000, her insurance pays $2000, so she needs to pay $5000.

Would the MS society help with that?
Thanks,

stillfighting · Post by **stillfighting** » Sun Sep 26, 2010 10:07 am

The ms society leads a lot of people and dr's too ( yes dr's) to believe) ms patients get a lot of help.

There for making it appear as if, someone with ms would not be doing without.

This leads to a lot of extended family problems, at least it has in mine.
I have brother's and sister's whom assumed if my parents ever helped me.. I WAS TAKING from them and was convinced it was like stealing.. as why would I
ever need that kind of help.
Now I am on a RANT.. this is taking me back to many issues I hate to RE live.
YUK this has not been a good week.
I feel you pain totally

itaska21 · Post by **itaska21** » Sun Sep 26, 2010 2:49 pm

The MS Society is in bed with the pharmaceutical companies, pure an simple

.

stillfighting · Post by **stillfighting** » Sun Sep 26, 2010 4:50 pm

While I do not know what all they do help with..
I do know that the MSAA is a much better and kinder place to go to.
I doubt that they would help pay for any of the drugs though. I don't think any of them do that.