Back to the DRAFT...Here's a little sumpin' sumpin' sent in by an anonymous CHEESE reader, discussing one of MY favorite subjects: Tapping MSers Pockets FOR MS. Y'all already KNOW my thoughts on this issue...here is someone else's view:
I am single and had been OK with this path until I ran into the healthcare buzz saw involving MS and maturity. I think all those domestic arts classes or whatever they are called these days should tell folks that they really must have children for their old age long term care. In fact it’s necessary these days to have some sort of caregiver for many treatments and even tests.
It is eminently annoying to read in the MS propaganda about "involving your care partner", etc., etc. What rock have these people been living under? Have they looked at the census stats re: the astounding number of single households?
BTW, why on earth are there 2 national MS associations or societies? I've heard the "party lines" from these organizations' staffers, but based upon my professional experience this evolved because somewhere in their historical development there were competing egos. Wouldn't scarce resources be better spent if overhead, staffing and fundraising expenses, were used for only one organization?
When also did I become fodder for the fundraising appeals of not only these 2 competing organizations but also both of the "MS clinics" I have been to? What is the use of signing all the HIPAA crapola if these medical institutions can troll their records and put me on their appeal lists? Oh you may say that is not the purpose of HIPAA (which I understand), but someone has put me on the MS organizations' lists without nary permission from me. Appeal letters and support group notices are not welcome and I never ever asked for any of them. I guess my only consolation is a perverse knowledge about the costs of direct mailing appeals and the fact that I am bringing down their success rates. How these turkeys got my business address is unknowable and a thorn in my paw.
It is eminently annoying to read in the MS propaganda about "involving your care partner", etc., etc. What rock have these people been living under? Have they looked at the census stats re: the astounding number of single households?
BTW, why on earth are there 2 national MS associations or societies? I've heard the "party lines" from these organizations' staffers, but based upon my professional experience this evolved because somewhere in their historical development there were competing egos. Wouldn't scarce resources be better spent if overhead, staffing and fundraising expenses, were used for only one organization?
When also did I become fodder for the fundraising appeals of not only these 2 competing organizations but also both of the "MS clinics" I have been to? What is the use of signing all the HIPAA crapola if these medical institutions can troll their records and put me on their appeal lists? Oh you may say that is not the purpose of HIPAA (which I understand), but someone has put me on the MS organizations' lists without nary permission from me. Appeal letters and support group notices are not welcome and I never ever asked for any of them. I guess my only consolation is a perverse knowledge about the costs of direct mailing appeals and the fact that I am bringing down their success rates. How these turkeys got my business address is unknowable and a thorn in my paw.
Just about anything that comes from any sort of MS society, whichever, goes right into the circular file, where it richly belongs.
ReplyDeleteHad no idea there was another MS organization, one is enough.
ReplyDeleteActually I have gotten much useful information through the NMSS. I agree some money could be better spent, but without organizations such as these advocating better laws for those disabled, better drugs, better health care benefits I STRONGLy Believe are rights would be trampled on -- and that we would not have nearly as much "freedom" and people helping those of us with MS. It's inevitable money be spent on staffing, one organization could possibly be more efficent -- or not. Often it's though competition that better results come for the individual consumer -- anyone want to argue that?
ReplyDeleteI have walked for the MS society and I HATE the UNWANTED mail asking for more donations. I'm embarassed, enrages and incensed those who have already sponsoreed me are barraged by requests for greater donations -- and that the names, addresses and phone numbers of donators are sold to other organizations -- and I don't care if those other organiations help others. Don't SELL MY INFO or that of those who sponsor me. And yes, sometimes the money is spend to fund what I consider unnecessary clinical trils or tests. HOWEver, I still support those organizations with my time, money and effort because I recognize the importance of advocacy -- I need and want help in coping with my MS, healthcare for my MS, MS drugs and the organization as a whole is looking out for the needs of those disabled. Don't think for a MOMENT your goverment or drug company or whomever is going to help just because it's the "right thing to do." PLEEze, get real.
That's my soapbox and I'm shouting those words out for all to hear.
I forgot to add how much i apprecite the MS specialist who donate their time to all of us at speaking engagments and web/pod casts sponsored by these MS socieites -- and even the drug companies (in spite of the hype). These doctors don't Have to do this. The ones I've come across volunteer their time because they really do care about those inflicted with MS and do their best to help educate us/answer our individual questions AWAY from the pressures of the Medical Practice in which they are alloted 15 to 20 minutes per patient --not nearly enough time to give quality care. AND, a big Cheesey Cheer to those MS specialists who've give us patients their e-mail and have taken the time to answer us,support us, help us and yes, help to calm our fears.
ReplyDeleteForgot to say that I totally agree with what you wrote that most of us ARE SINGLE and have NO significant OTHER to turn to for help/emotional or financial support. AND I think IT'S MISERABLE BEING SINGLE AND ALONE,but hey...life sucks and then ya die - (LOL)
ReplyDeleteAmen sister on the singles with MS!! I was diagnosed at 21, and doctors just assumed my parents were "involved" and passed all sorts of info to them that never tricked down to me. Hello - did I give permission for my health info to be shared?? My parents and I don't have a relationship and the minute the novelty of my diagnosis wore off, I'm back on my own.
ReplyDeleteNow that I'm older it's all about roping in the "care partner"... seriously?? What's wrong with just me? And a home nurse / patient advocate if the situation requires it.
Yes, many of us are divorced once the real bad stuff starts to happen with the MS....alot of us are our own caregivers...
ReplyDelete