Takes the cake, burns my ---

[MeSs to live with]

I read a lot of different things that people are told about MS
& many I have experienced. This one was brand new to me
& said right to my face.

At an out of state wedding in a large city, I inquired about
the bride's new MIL & that I understood she had recently
been diagnosed with MS. Oh, no, you have received
incorrect info, she was diagnosed a few years ago, had
some treatments & now she' s basically ok!

I kindly smiled, said that was great news & she is definitely
a lucky woman &I hoped her good fortune. I was about
to slowly walk away with my cane, left drop foot dragging
when she put the cherry on top of the 4 feet of cool whip
covered perfect piece of cake. You know, they are doing
so many new things with MS research & new treatments,

no need for folks to suffer & their disease to progress now.
Such a sweet look of condescension got me dragging away to
a safe haven before the tears started rolling.

I later ranted & raved, to my DH about no longer having a clever answer now that my brain is about 30 years older than
me. BUT, the next morning, I awoke & realized that most
likely all of these people from 2 different large cities are
considering that this poor ole rural resident married to
their cousin is so messed up because she's never seen
a really Good Neurologist. All not true, but I couldn't spit
it out. Hurt feelings are now replaced by wild --- ANGER.
Thanks for letting me spew out some of my burning guts!!!

[KatieAgain]

I am sorry you went through that darling. You know what I did, I have come up with some "canned" responses to situations.

For example, when I read these boards and some of the responses people have with parking in handicapped parking spots. It horrified me...and it would horrify me if it happened to me. So, here is my canned response if anyone would holler at me for handicapped parking.

"I am sorry that you feel that way, I have multiple sclerosis and my doctor felt I needed that placard. Here is my phone, lets call the police and let them make the decision if I should park here or not." And of course, I would dial the police. It is against the law in my State to harass a disabled person. I luckily have never had to use this response.

Maybe before you go to your next event, you should have a canned statement, something polite and sweet. Unfortunately in your case it was the bride you were talking to...and it was her day. I think you took the high road and did the right thing. She is about to find out soon enough what MS is all about.

[aitch10]

I'm so sorry. What a cow! How dare she!

FWIW, I'm fine cognitively but would have completely lost it and seemed, er, NOT cognitively fine if I had been approached that way.

[zilphia01]

hah!

I love this forum. It is as though you are all reading my mind. I have a hard time finding nice nice to answer some of these people.

I have started mimicking that older woman in the commercial (sorry cannot remember what they are selling) and she is telling her husband how her son is going camping for a honeymoon. Camping???? She says, Well, that is interesting.... which she says quite superiorily..... so now that is my answer...... "well that is interesting", I smile falsely, and walk away. I really do not care enough to want to change them.

good luck. God Bless. I try to remember there are better things for me to worry about and try to change.

[Grace53a]

Although I'm not surprised, I do understand how frustrated you must have felt. I don't have MS, but NMO. The misconceptions that people have, and some of the things that they say (even fellow patients) never fail to amaze me. Sometimes, it's actually hard to keep from losing my temper, and that's saying a lot as I'm fairly easygoing. Seriously, I wonder sometimes, how I've ever managed to deal with this disease and uninformed people without the top of my head blowing off like Mount Vesuvius. Where do these people come from? Don't they realize that if there were a quick fix or a magic bullet for these diseases that none of us would be sick? Good for you for not losing your temper.

Grace

[Fed Up]

Wow! What a great emotional release for me and yet some uplifting comments, enough to make me laugh! Thanks.

I could have written that title, myself and one reason I stopped in.

Same thing happened to me, at the Chase bank. I was diagnosed 2 days prior and just needed some quick cash. I moved, too far from my bank and decided to open an account. I was already frustrated with my life. And pretty upset, I knew nothing of MS and what was coming. Just felt, my life ending~as I had known it. (at that point).

The Chase Bank Rep. said, "Well, they can do many things for that these days and how much would you like to deposit!" All in the SAME breath! I have not been back and will go in and get my automatic deposits, that have built up and talk to the manager.

What I find interesting is the, 'KatieAgain' information. I was unaware it was against the law to harass a disabled person. Even if it isn't, an employee in a workplace, would get the hammer for doing it. As, it is 'harassment' of a 'member.' I was unaware! Always learning!

I was in Costco and had to do a riding cart deal, was pretty upset about it, to begin with. Was looking at the Optometry area (as my sight is going) and I had a new script. Someone left a lower cabinet door ajar (i did not notice it). I was trying to get around the corner and an older male employee was laughing and talking to a woman, which seemed to be non work related.

I could not get around them, or interupt, as they were so involved and no one else mattered. I backed up and the a door, I did not notice was ajar, it banged, very loudly, shut and it sounded like I crushed the entire cabinet.

the employee finally turned around and Laughing extremely loudly saying, "Woman Driver!" I retorted a visceral feelings~raw and real, (usually, I go away and regroup, quietly):

"I couldn't get around you and was trying to be polite and not bother you." Meaning, you were rude and did not bother to move a chair 8 inches.

I was so upset and I seldom EVER, well that was the first time in 60 years, I was so upset and crying. I went to the floor supervisor and reported him. It has been 8 months and he is no longer at Costco! Hooray Costco!

I feel bad he lost his job, but there is a possibility, he is at another facility.

I love Costco, I don't need to tell their employees I am not so well today. they seem to figure it out and ask me, 'if I need assistance.' Or else, they took my picture off the video from the above incident and posted it and told the employees to watch out, for me! LOL...I believe they did the right thing. He was OLD enough to know better.

Now, I'll start a, I am upset thread of my own.

Thank YOU Mess To live With and all the other posters (I needed this, tonight); You made my day. fed up

[newbie but goodie]

I try to have canned responses ready too but people can be so surprising with the crazy things they say! A guy who works in my building was like "Golly, I've never known a person with MS who does all that activity. Usually they're, like, bed-bound". Just what I wanted to hear, right?!

And God forbid, as a young woman with no outwardly obvious disability, I try to sit down in a non-sitting situation or feel myself ready to keel over because of the heat. People say "just wait until you're my age". I wish they knew my body already feels like it is 99.

If there can be a positive from having MS, mine is that I try very hard not to judge others. I really know how it feels and understand that things are not always as they appear. Also, I know that people are most often trying their best no matter how it appears to other people.

[Kenmore]

I am sorry you went through that darling. You know what I did, I have come up with some "canned" responses to situations.

For example, when I read these boards and some of the responses people have with parking in handicapped parking spots. It horrified me...and it would horrify me if it happened to me. So, here is my canned response if anyone would holler at me for handicapped parking.

"I am sorry that you feel that way, I have multiple sclerosis and my doctor felt I needed that placard. Here is my phone, lets call the police and let them make the decision if I should park here or not." And of course, I would dial the police. It is against the law in my State to harass a disabled person. I luckily have never had to use this response.

Maybe before you go to your next event, you should have a canned statement, something polite and sweet. Unfortunately in your case it was the bride you were talking to...and it was her day. I think you took the high road and did the right thing. She is about to find out soon enough what MS is all about.

In your response to handicap placecards - I have one. One major issue I had after my first attack was spacicity (or a really tight muscle from my back to hip). My employer did not have a handicap space. It was all paid meter parking (downtown area). So I got one, and I've used it ever since. I went through such (excuse me) 'hell' with all of this, I feel like I needed and deserve someone giving back to me. I have no problem with that. Even if I'm wearing heals and walking fine. Nobody knows how my body really feels. Even if it is just fatigue/exhaustion. I'm using it. Even if I feel fine - I'm using it. And I don't take my shopping cart back anymore. I used to be religious about it, but I haven't had any help with this MS and I feel like I can use some help. So I am taking it. If someone has a problem with either of these things...I'll take them to coffee and talk with them about my past 4 years.

[onlyairfare]

I try to have canned responses ready too but people can be so surprising with the crazy things they say! A guy who works in my building was like "Golly, I've never known a person with MS who does all that activity. Usually they're, like, bed-bound". Just what I wanted to hear, right?!

And God forbid, as a young woman with no outwardly obvious disability, I try to sit down in a non-sitting situation or feel myself ready to keel over because of the heat. People say "just wait until you're my age". I wish they knew my body already feels like it is 99.

If there can be a positive from having MS, mine is that I try very hard not to judge others. I really know how it feels and understand that things are not always as they appear. Also, I know that people are most often trying their best no matter how it appears to other people.

Yes, people say a lot of dumb things, but I agree with you, most people are trying to do their best. "Best" might be something dumb, and not what we would prefer or do, but I find it easier to just let it slide if I possible, or have a canned response.

Sometimes I just shrug and say "Old war injuries." If they get too nosy I'll just say "Why would you ask such a personal question/make such a personal remark?" My mother did teach me "Don't make personal remarks" - good advice.

MeSs to live with, I'm so sorry you had to go through this, it sounds like it was really difficult. But since it was a wedding and people were focused on the bride and groom, I bet no one is remembering you as the "poor rural cousin's wife." They are thinking about the newlyweds and the fun they had at the wedding.

Vent here because we know how it feels, follow any suggestions that might work for you, and then don't worry yourself about other people's stupid comments.

[Seasha]

MeSs to live with~ I think so many of us have had to deal with this. I'm sorry you did too.

On a lighter note, please read the following that was circulating around here and started a couple years ago. And if you can, have a good laugh - it's wonderful medicine
http://www.msworld.org/forum/showthr...+things+people

Stay well!

[palmtree]

MsS to live with,

I'm getting analytical but it seems most non MSers don't want to even visit the possibility that it could happen to them too. They are uncomfortable, don't know what to say so they say something stupid.

My favorite one is "so and so has had MS for 30 years and she is still going strong." Well, my body has been diagnosed for 3 years and I can't do 1/30 of what I used to.

The ones who are parental are the worst. 'My mind may react more slowly but I still see and hear and know what is going on around me.' I want to say.

Every once in awhile someone is truly kind. I treasure those moments.

I'm really sorry you had to experience something so painful. I say, "good for you! You went to a wedding." That takes a lot of energy.