Why yes I would like some cheese with my whine.

[Gary]

I am tired of having MS. I am tired of trying to be up beat. I just watched a bit on the news concerning a MS bike ride (WHAT?!?!) and it had someone with MS riding a bike and said " I have MS and I never let it slow me down!" I am so angry that I could spit nails. I cant go outside because its too hot. I cant walk without looking like I am on the 4th day of a 3 day drunk. I got stung by wasps this morning because I cant get away from them fast enough. And why? Because I cant see the $%^& things before its too late. I don't dare swat at them because I will throw off my balance.

Okay now I am going to get some cheese if I can manage to slice it without cutting my finger off. lets raise money by getting pledges for how many hours you sit on the couch. How long can you spend getting out of bed. Or how loud can you scream at someone who says "But you look so good!"

Thanks for listing.

[Jeanie Z]

:) Hi everyone and Gary.

I get really annoyed with all the MS publications with stories of MSers climbing mountains, riding bikes, etc. When you have had MS over 50 years like me you do not do any of those things anymore. Some I never did.

I also think they know how to cure MS but will not tell anyone because big pharma are making too much on the MS symptom drugs. Also they would have no jobs if we were all cured and the majority of the funds raised go to staff. Jeanie :)

[stillstANNding]

Hi Gary, Jeanie.

I am with you both on the fundraising. Here they have a climb (up the steps) to the top of the Hancock building. Yes. And it makes me crazy that they do this. I realize the point might be buried in there somewhere that MS'ers can't always do that. It just isn't clear enough. Same w the Bike rides and walks. I hate it. And I do not want to meet the woman who has MS and climbs mountains. When I first had MS, I worked a demanding 10 hour a day job and went to school at night- so there!

Jeanie, I do not think they have the cure and are not telling us. Anything is possible.

ANN

[Frog42]

I hear you. It's too hot for me to even sit outside and hand out water to the folks walking. I'm lucky to even get everything done around the house.

I'd like for someone to tell me I "look so good" while I'm sitting down and they're within swatting distance.

I'm tired of it too, Gary.

[SalpalSally]

I hear every word Gary and even a few you didn't say
GRRrRrRrRrRRRRR wip2.gif

W A S P S!!!

[Gabriella7]

I agree with Gary and everyone else and just yesterday I was talking to someone I haven't spoken to in over a year and she was saying "that I sound much better" so.....I must be much better if I sound better... I agree that in the past.....I have sounded like I was drunk because I slurred my words because I was so tired I didn't even feel like talking much less expaining how I feel to anyone. It doesn't mean I don't have MS and MG anymore....does it? More than one person has told me this.

I spend hours getting ready and going to church occasionally and then I hear...."You look so good". Does this mean they think I am faking my illness? It is very frustrating and I have been trying to get the nerve to come up with a good reply....such as...."I should look good it only took me 3 hours to get ready!"

All I can add is it makes me angry too that so many of the ads in the MS magazines show people who have MS who can do things I couldn't even do before I was diagnosed with MS (because I probably had MG and MS for many years).....like climbing mountains.....running a marathon....even walking for miles.....or riding a bike long distance. These are the ads that are pushing BigPharma drugs but other people see these and think that all it takes for us to be well is to take their drugs.

The last time I participated in the MS walk I was in my wheelchair and someone else had to push me and that was 6 years ago. There were a lot of people with MS who were in power chairs, scooters, and wheelchairs and I thought..... there is something really wrong with this picture. All these sick people who are out here.... to raise money to pay the salaries of healthy people.... who are able to work in the foundation.

All the family reunions, college reunions, and golf picnics are held in June. I can't even walk outside the house in the June heat! I always feel left out of life because of MS & MG. I'm tired too and tired of playing the part of Pollyanna and pretending that having MS is something that I should just live with and be grateful because one can always find someone else who is worse off!

Pass the cheese pleese.....to go with that very good whine. This was a good topic and gave me the opportunity to say what I have been feeling for a long time.

Gabriella

[agate]

Gary, sometimes the people who tell you you're looking well are really just trying to cheer you up, I think. At least that's how I choose to take it when anyone says it to me. I beam brightly and thank them. After all, it sure beats having someone tell me I look like death warmed over--which may be how I'm feeling when the person says I'm looking well.

And, those class reunions seem to have their good sides and their bad sides. I haven't been to any either but I've heard from some people who have been to them, and they sound like occasions where people boast about all of their success and show off. They exchange addresses and phone numbers and say they'll stay in touch --but they don't.

As for family reunions, it's too bad to miss those if you get along well with your family. But if getting there and having to interact with people tires you out, why put yourself through that? You might be putting the others through a lot too because they'll have to pick you up off the floor when you fall.

The way I look at these occasions I've missed is that I've spared people the problems I'd create by being there.

[renee]

I'm with you on the bicycle thing, Dr Gary.
NARCOMS will be hearing from me.
Their latest mag arrived and, WANGO-pages of people on bicycles being upbeat.

My regional NMSS rag is almost all fundraising all the time- very little science or practical life help.
Inspiration for me would better come from an article on a successful wheelchair-bound
professional gambler in Las Vegas. :>)

Agate has got a point. If you hide out you don't have to listen to anyone.
As per family- I think it's a good thing for them to occasionally participate in
one's MS'edness.

I have a bee smoker to scare bees back into their hive.
Sheesh i wonder how wasps react to smoke.
Second hand.
What kind? says Grassman.

[Pegakafarmgirl]

Oh Gary,, i hear ya loud and clear,,, it isn't easy to be us, is it,, everyday is a challenge, we have to enjoy the things we can do, and the heck with the rest, its hard to swallow, but it stares us in the face

My mother always told me, I was faking it, she could never accept me being sick,,thanks mom,, my dad always said, he was amazed at what I can do, or try to do,,

hang in there Gary,, pass the oar to someone else now,,

[SalpalSally]

Chuckle chuckle @ Renee. Thanks.

[RandomThought]

I have to agree, Gary


That was some fine whine !

[Gabriella7]

Practical Help from MSAA

When I was needing help way back in the beginning of my official diagnosis... I called the NMSS to see if they would have a loaner wheelchair I could use just until I got evaluated for the one Medicare was going to buy me. They told me they did not have any storage facilities to store assistive devices. I found a rep who had a demonstration chair I could use until mine came in.

Later, found a wonderful organization who actually has supplied me with a (free) rollator, new scooter, cooling equipment, shower chair, bench seat, grab bar, (no cost to me) and loaned me books with a return postage paid bag to return them in. I have given all my support to them. It is the Multiple Sclerosis Association of America.

When I participated in the MS walk back in 2006 and raised money for NMSS...I thought I would at least get a free t-shirt. I didn't get a t-shirt because they were selling them for $75.00. I donated my car to the MSAA and if I have anything else to give....it will go to the MSAA.

The only help I got from the NMMS were some pamplets (all information I could get on the internet) when I needed something practical to help with daily living. I have gotten regular requests for money to be donated to them. They go directly into file 13.

Gabriella

[Parsi]

Hi Gary, Jeanie.

I am with you both on the fundraising. Here they have a climb (up the steps) to the top of the Hancock building. Yes. And it makes me crazy that they do this. I realize the point might be buried in there somewhere that MS'ers can't always do that. It just isn't clear enough. Same w the Bike rides and walks. I hate it. And I do not want to meet the woman who has MS and climbs mountains. When I first had MS, I worked a demanding 10 hour a day job and went to school at night- so there!

Jeanie, I do not think they have the cure and are not telling us. Anything is possible.

ANN

With a LOT of work we can do a LOT more than we think we can do. HOWEVER it would be like training for the Olympics for many of us to accomplish what some people is considered normal. I've "met" someone who hiked up a mountain, though he was more than exhausted upon returning to the bus. I imagine others may have been a tad bit out of breath.

People with MS (or any chronic condition) have to weigh carefully whether an accomplishment is really worth our energy (forget the time -- unless it's the time you loss while recovery from the effort).

And the bike rides are unreal. What is it? 3 days? I wouldn't have been able to do that when I was healthy though I use to ride all around town for enjoyment. I'll stick to the 3 mile walks which I might or might not be able to make.

By proving we can do what others can, we are actually doing more than they IMO.

[Parsi]

...
When I participated in the MS walk back in 2006 and raised money for NMSS...I thought I would at least get a free t-shirt. I didn't get a t-shirt because they were selling them for $75.00. I donated my car to the MSAA and if I have anything else to give....it will go to the MSAA.

The only help I got from the NMMS were some pamplets (all information I could get on the internet) when I needed something practical to help with daily living. I have gotten regular requests for money to be donated to them. They go directly into file 13.

Gabriella

That's strange. Twice I got shirts. Perhaps it depends on the state organization or the sponsors. I walked 3 times. The first 2 they fed us after the walk. The last time we had to pay.

The mailings and constant donation requests annoy me. They are spending the money to do it that we raised. And people don't like to give more than once a year. They don't even like giving to more than one person for the same cause. Several people said "no" to my request because they always gave to another person they knew.

And I was turned down by one person because he also believed that a cure had been found.

[Cherie]

I'm with Gabriella...the NMSS no longer sees any of my charitable dollars. Those go to the MSAA and the MSF because they are there for the person with MS....not to try and find a way that someone 50 years from now might avoid getting MS. Only about 9-10 cents of every dollar raised in these bike rides, stair climbs, runs, walks, airplane pulls (yes...here in RI, the NMSS is across the street from the airport and FedEx gives us the use of a 737 to see which team can pull it on the tarmac the furthest and people pay good money for the chance to pull a plane). Abouy 35% of their budget goes into administration and salaries and 20% goes into development (a fancy word for fundraising). The remaining 30-35% goes into research. I remember attending the annual meeting of our local chapter in 2003 and they announced that the NMSS had awarded a couple of million dollars (not clear on exact amount) to 15 different research projects. What I do know is that none of those monies awarded in 2003 has brought about a drug or device that to date has made any of our lives easier with MS. Another thing...I have never met anyone working for NMSS who has MS. I have with the MSAA and MSF.

Gary,
This may sound awful because I know you were totally being honest with us and feel crappy a lot lately, but you have the makings of a great stand up (fall down) comic. I enjoy you!

***If you know how to search the right places, you can get the 20+ page PDF that gives you a line by line readout of where your dollar donated to the NMSS goes and who gets to be employed because we often cannot be.**** I say this because I have found and read it but can't remember where or when or how to find it again.
'