But today's email from the National Multiple Sclerosis Society just could NOT be ignored...so here goes yet another bout of spout...
Hello, NMSS...Yes, we ALL know this week marks the kick off of what is quietly whispered as National MS Awareness Week, March 10th - 17th. I say "quietly" because NO ONE ELSE, BUT PEOPLE WITH MS seem to know this "awareness" exists at all...and still, we try to promote OUR parade week, falling far short of those damn Breast Cancer folks in both awareness and fund raising...another rant for another time.
I have to tell you (once again), I'm still rather pissed off about the sudden color change for our gang sign...I liked the RED BAND OF HOPE rubber wrist band...still have one and still wear one. But this is only because you've done nothing to REPLACE the item with the new orange and brown (seriously, brown???) gang colors. Fortunately, I "donated" some money to the cause two years ago and BOUGHT several of these items, so I'll have a few to wear into my old age to promote the cause...doesn't seem likely anyone is going to be making an ORANGE version of this BAND OF HOPE any time soon...I mean, it HAS been two years since you discontinued it.
And speaking of FUND-RAISING...I get more emails than I can possibly delete from you wanting me to join this walk or that bike ride or be a part of some "movement". I'm going to type really slowly here so you can get this. I HAVE MS. Repeat. I HAVE MS. Walking, riding a bike, and simply MOVING is quite a challenge on GOOD days! Why is it you continue to ask ME to do these things? Oh sure...I DO participate when I can and I'm also quite skilled at SUCKERING my unsuspecting friends into draining their pockets, time, and energy to support these events. They DON'T have MS and oddly, they DO support me. There are hundreds of thousands of good people out there WITHOUT MS who do want to help raise money to find a cure for this crappy disease...if for no other reason, than to SHUT ME UP! But maybe you should be focusing more of your "fund-raising" energy on them? They likely HAVE more "fund-raising" energy AND money available because they DON'T have MS!
When I can, I slip you a few dollars every year in donations...I'm not saying this to brag...I'm saying this because it is true. I'm certainly not looking for a free ride here in treating/research/curing Multiple Sclerosis and, like it or not, I'm a part of this "team". When I've got extra cash, YOU get it...because ultimately, I have this Pollyannic notion what goes around, comes around...and, you'll GET around to me...eventually. Because the sad and harsh reality is, I'm NOT GOING AWAY AND NEITHER IS MY MS...unless, of course, some of that fund-raising money really DOES find a cure for this bitch-slapping disease.
Had you not sent me this email today, NMSS, I might not have written this post at all:
The email itself is your typical, "you can do it, rah rah, ain't life grand with MS" email...I'm used to these. Somebody needs to keep a positive attitude and I'm banking on YOU for this...because frankly, sometimes MY attitude about MS just plain sucks. But it is the "address" you used that sent me into a tailspin today! The email begins with "DEAR SUSAN"!!!!!!!
My mother named me "Linda" for a reason (actually, my sisters named me because my mother was too tired to come up with anything after birthing her 3rd female child)...there's no "SUSAN" in my name...not even my middle name (which would have made me an "LSD" by initials and I KNOW my mother would not have approved THAT, tired or not!). I've known several "SUSAN's" in my lifetime, but I've never assumed their identity...I don't BLOG as a "SUSAN"...and, never once has the name "SUSAN" been used in context with me (other "choice" names sure, like "A-hole", "beauch", etc., but never "SUSAN").
So, as you can see, I'm a bit put off by this email...you obviously don't know me nor care to know me even well enough to get my name right...you've kind of "soured" my MS Awareness Week, quite frankly. It's like being told there's a party for you and then discovering you are NOT the guest of honor...someone named "SUSAN" is...perhaps you should talk to HER next time you're looking for a donation...
25 comments:
The color change was the worse thing MS did. I have my red wristband and my multiple color ribbon pin (note: the pin is the reason I chose the ribbon with the dove when I blog). I felt embarrassed one day when I went to my pharmacy to pick up my Copaxone and they had a jar of red wristbands. I went on and on about how great it was that MS was marketing the red wristband, until the pharmacist said the wristbands were for Diabetes awareness …wtf. When did the diabetes Association steal the red wristband-marketing tactic from MS?
I learned the hard way about people and their names. The editor called me this week for writing a woman’s name wrong after the woman called the hotline witching :) After checking my notes I was not in the wrong for spelling it wrong, the president of their club spelled it wrong. Therefore, all I could say to the editor was, “the woman should have been there and this would not have happened, but I do apologized for the mistake”. I know the feeling when it comes to your name, my last name gets chopped up every time someone try to say, I prefer they call me by my first name once they realize they have no idea how to pronounce my last name. That is the very reason when I write a story for the paper, I ask the person to spell their name to avoid mistakes.
hiyah linda...come on over to my place...i have a little something for ya! :>)
I hear you loud and clear even with my bad ear! I belong to the MS Society and I recall how pissed I was to get that first beg for donation letter which was a touching story from a 9 year old with MS. Excuse me, they should check their member database to know which letter to send to MSers and non-MSers. Yes, I feel for the 9 year old, but I have MS! The worst was when waiting months for an MRI appt. from an MS centre hospital 3 hrs away and when the call came, they were asking for a donation, not giving me my long awaited appointment date. I'm embarrassed to say I actually screamed at the poor woman to 'Go straight to hell!'. I was shaking with anger and frustration for over an hour after that one. Sorry Linda or do you prefer Suzie Q.?, I hear there's a song about you. Thanks for the rant. I'm feeling much better now. How about you?
Stay inspired!
Michelle
Expand your mind ~ visit Brain Angles
Linda, I riffed about this very NMMS issue on my blog (in a comment response to catz, today)--now it is BROWN and orange? They should give it up. (Like they already did)I agree with your every word. They are failing us. I want to see where every donated dime has gone.
So have ya got "Linda Sue" going through you head yet? It's got a nice southern ring to it.
By the way stop by, I've got something for ya.
Stop by www.msmaze.com to pick up your award!
I agree that they should stick to one colour and leave it. Here we have red for Heart Disease, Canadian Blood Services (they took over from Red Cross for blood collections), and MS. Sadly, at this point in time, I think the wristband campaign has run its course.
As far as names go, I have been called everything in the book. The latest? Ms. Mac....guess they forgot the other half of my last name.
s.
Hey Susan, I mean Linda,
(I'm duckin' and running...lol) come on over to my place for a little something plus a totally different something.
~Jerry, I mean Jeri
BLINDERS OFF:
Mistakes happen, others will be blamed! LOL But seriously, I have NO idea where the NMSS got this name from.
LD
MERELYME:
I'll head there right now...how you feeling, BTW?
LD
MICHELLE:
I always feel better after a good rant...almost better than sex! But then again, how would I know? I seem to "rant" far more often than the other...LOL
LD
DIANE:
Yep, I think some big salaries are being paid...for "research", of course!
LD
LISA E:
Peggy Sue maybe, but not Linda Sue...I suppose I should be happy the email didn't start with "Dear Shrek"...
LD
MANDYC:
Alrighty then...heading on over to your place now! Put the kettle on for the tea...
LD
SHAUNA:
My mother used to say you call her anything, just don't call her late for dinner!
LD
TICKLEDPINK/JERI:
OK, but once I get over to your place, I DO expect doughnuts and coffee!
LD
LOL! I get too many emails from NMSS as well, also addressed to Susan. They waste more time and money on flyers, postcards and other printed materials than is reasonable.
Seriously, when I've tried to get any real information from them, I don't exist.
Come fundraising/walk time, I'm bombarded with attention.
They are starting to irritate me...
Since you brought it up...my name is Stellarlife not Stellar life; no space was not a typo, though I make so many I totally understand going there. stellarlife is a made up word for ME.
Dear Susan oopsLinda
reminds me of the year my support group raised a boatload of money- with thanks to my-then -employer with its matching gift program
We were the rookie team of the year and the local chapter rewarded us by sendng baseball game tickets to the wrong address,so to make up for it, we got bags of candy.........I've not raised another dime since then, probably to my own detriment..oh well
MANDY C:
I know "they" serve a purpose...just not one I am tuned into right now...
LD
DIANE:
OOPS! MY BAD...stellarlife...guess that's sort of like calling me SUSAN now, isn't it?!?
LD
ANON:
Gotta do whatcha gotta do...I'll still "do" the donations/fund-raising, but I am a bit "bitter" about it all...could you tell?!?!
LD
This is the time every year when I get really ticked off. It's M.S. Awareness week people!!! Can't we get a little recognition? Every time I see the "Breast Cancer 3 Day" commercial (which is on a billion times a day) I want to scream "What about us???" I just love your response to the NMSS. You go girl!
You can call me Diane! I meant stellarlife is/was one word...now Goggle has decided it likes stellar life better, I give up. What? A small thing you say? OK, you force my hand: at my city job for 18 effin' years, people called me LINDA! Even on my last day there! There was a Linda there, only thing we had in common was,er,we both spoke our minds and were buddies...BUT THEY NEVER CALLED HER DIANE! And, she left in 1997, new people hired, who never MET her, called me LINDA! WHY?? STELLA!!!! Wait, TWO of you got Dear Susan letters? AH!
Dear Stupid Unknown Sucker And Nameless,
why can't you just be honest & admit your REAL name is Susan . . . ha ha ha ha ha ha . . . and to think I get pissed off when they put an H at the end of my name, at least they're close to knowing who I am!
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