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    #31
    Originally posted by dalechilders51 View Post
    I agree with you all. I'm sick of the candy coating. MS is a horrible disease wheather you live or die.
    OMG, short and sweet and to the point! Well said!
    Tawanda
    ___________________________________________
    Diagnosed with Multiple Sclerosis 2004; First sign of trouble: 1994

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      #32
      Originally posted by Mable View Post
      Interesting. I live in a town of 60,000 people and noticed an MS awareness ad on a billboard nearby. It was hard to understand what point the ad was making. It showed two people with a line connecting them. Part of the NMSS MS kills connections campaign, I think.

      Now that I'm thinking about it, it was about 1/4 mile from the state capital building. (I live in a very small state.) It's probably not a coincidence that our legislators are currently in session.
      I had to re-read that part about "MS kills connections campaign"...subliminally, I was just getting "MS kills!" (Although that could be the point some of us want to make here!)
      Tawanda
      ___________________________________________
      Diagnosed with Multiple Sclerosis 2004; First sign of trouble: 1994

      Comment


        #33
        Originally posted by dalechilders51 View Post
        I agree with you all. I'm sick of the candy coating. MS is a horrible disease wheather you live or die.
        So several in this thread remarked about candy coating, or not showing both sides of the disease (those that do well, and those that don't.)

        Today I got my Narcoms magazine (for you who aren't familiar with the organizaton it is patient registry of MSers and they send you surveys every so often to fill out, plus they list the trials in their quarterly magazine.)

        Last page of the magazine, Their Faces of Narcoms feature is this story: Happy to be a Zero. Great news for the gentleman who wrote the story, he was diagnosed in 1998 with optic neuritis, and that has been his only symptom all these years. He even managed to pass the eye test so he could become a pilot. http://narcoms.org/narcomsnow/faceso...ring2013/page1

        The gentleman is just telling the truth, telling his story, and that is more than okay with me. But he's so much in the minority, makes you wonder why Narcoms would feature a story about a man who after 15 years still has a disability rating of 0.

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          #34
          I'm delighted there are some people who've had MS for years and years with basically no problems. I've known pilots who had to give up their jobs because they had MS, long before they were unwell.

          That's great, but (and yes, I'm jealous) I think concentrating on the miraculous gives false hope for the vast bulk of PWMS, especially the newly diagnosed.

          Especially when no-one wants to mention SPMS, which is the gorilla in the room.

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            #35
            Originally posted by Thinkimjob View Post
            I'm delighted there are some people who've had MS for years and years with basically no problems. I've known pilots who had to give up their jobs because they had MS, long before they were unwell.

            That's great, but (and yes, I'm jealous) I think concentrating on the miraculous gives false hope for the vast bulk of PWMS, especially the newly diagnosed.

            Especially when no-one wants to mention SPMS, which is the gorilla in the room.
            A million likes or thumbs up or whatever to the bolded. I'm very optimistic and cheerful, but as a 39 year old who can barely walk unassisted I gotta say that hearing people who are in their 50's or 60's bemoan "negativity" makes me want to stick a fork in my eye.

            It's super important to be positive, but we also all need to be realistic. I was a twentysomething RRMSer 10 years ago, going to grad school and traveling the world, now I'm the D word - disabled.

            My life is great and full, but... but... but my legs don't work. There's no rosy way to admit that.
            Aitch - Writer, historian, wondermom. First symptoms in my teens, DX'd in my twenties, disabled in my thirties. Still the luckiest girl in the world.

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              #36
              Amen to that fork, aitch10. (Though in my current state, I'd either drop it or forget why I got it out of the draw in the first place.)

              Comment


                #37
                Originally posted by Thinkimjob View Post
                Amen to that fork, aitch10. (Though in my current state, I'd either drop it or forget why I got it out of the draw in the first place.)
                Ha!

                And I must apologize if my post seemed harsh. I have a wicked cold that's making me a bit punchy.
                Aitch - Writer, historian, wondermom. First symptoms in my teens, DX'd in my twenties, disabled in my thirties. Still the luckiest girl in the world.

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                  #38
                  Thank to those who understand our point here

                  Hi. Again, I will reiterate my stance on this.

                  First, I do come here for comfort, knowledge and emotional support. I try to help others as best I can by providing moral support and comfort if I can, and also point them in the direction of sresources and help whenever possible, from my limited knowledge base. (Which I am trying to expand whenever I have the time, energy and focus to do so.). Like everyone else here, I admit to sometimes getting so wrapped up in my own troubles that I haven't been able to give back near as much support as I've been given.

                  My problem with the candy coating on how MS is presented in the media and by the medical profession itself, is that it leads to yet more problems that we MSers have to deal with in every day life.

                  Many in the medical field, even those specializing in MS, seem remarkably ill-informed about the very disease in which they are supposedly the experts. Take pain for instance, even though one of the reports that came out of the recent MS Convention, confirmed that major MS Related pain is a daily issue for at least half of all MS patients. Yet still we have everyone from general physicians, to MS nurses, to neurologists themselves still stating - and apparently believing - that MS is a pain free disease!

                  Another big issue with MS and how it is candy-coated when presented to the public is that it leaves people with the impressiion that MS is a disease that at it's worst, may cause mild physical dicomfort and slowly take away your ability to walk!

                  This is HUGE problem for all of us as this major misconception about how badly even a relatively mild, but symptotic, MS patient has his or her daily life affected. This is why so many of us are disgusted, hurt and offended when even our loved ones buy into it so thoroughly that they refuse to even listen - or, god forbid, take the time to educate themselves - and so our symptoms and fears are constantly downplayed. Then we are basically told to suck it up, think happy thoughts and get on with our lives!

                  It's great to try and think positively. I completely agree that we should try, but I don't like being made to feel badly when trying express how I'm feeling, or how scared I am, only to be told things like one of my "oh so charming" brothers put it the day I told him (and several times after that):

                  "Yeah, that sucks, but hey we'll all got something and we all have our own problems. So you are slowly becoming crippled and your memory's a bit foggy, big deal. It sucks, but that's life. Now just decide your gonna be happy and you will be."

                  Thanks bro. Thanks for making me feel like you think I CHOOSE to spend most of my life in bed because I'm in too much pain and too exhausted to cook, clean my house, spend time with my adult kids, have date nights with my husband....you know, just in general have a bloody life!

                  I'm quite sure I'm not the only one who gets these kind of off the cuff platitudes when someone finds out you have MS.

                  I don't want or expect sympathy or pity when people hear I have MS. I DO want them to have a bit of empathy and to know that it IS a VERY serious, progressive disease that adversely affects every single aspect of my life and future. I want them to know that cases like Montel Williams and the pilot discussed earlier in this thread, are in the MINORITY when it comes to having MS.

                  I want them to know that while they have at least some measure of security about their health and future, WE DO NOT!

                  I know how far downhill physically, cognitively, and emtionally, I gone over the last 18 or so years. Yes, I am happy to finally know why this is happening, but since finding out last October, I go to bed every night wondering how much longer I can keep what little is left to me.

                  I go to sleep - when I can sleep - each and every night in fear.

                  Will I lose all of my remaining cognitive powers by the time I turn 50 in 7 years? Will I even live that long? Will I lose my vision permanently the next time I have ON? Will my legs still work in the morning? Will I completely lose control over my bowels and bladder tomorrow, rather than just the occassional accidents I now have? Will I wake up partially paralyzed again? Or worse completely? And if so, will it last for two years again this time, or longer, or forever?

                  And that, folks, is why I want the candy coating of how MS is presented to the world, stopped. Show it in its ugliest forms to the general public, make it clear that can and does happen to a very large portion of people with MS. Put it in TV commercials, take out big glossy ads, put up billboards and flood the internet with the real, cold hard and scary facts.

                  Then maybe enough money will come in by donations and government funding, that a cure will finally be found. And maybe, until it is, more funding could be found to treat and help people with ALL forms of MS, even the most agressive forms.

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                    #39
                    Originally posted by JerryD View Post
                    Kudos, Wordsgood. If you get jumped, I am right there with you. If we, the afflicted, don't bark real loud, MS will continue to be misrepresented, simplified and marginalized. I know '3 college sized' words. I'm sorry. I'm not P.C. Shoot me. Don't promise me anything. Just give me a cure. That's the bottom line. Good luck
                    standing with you JerryD & Wordsgood. It is only in numbers that we can make the MS story REAL!!!
                    Live simply. Love generously. Care deeply. Speak kindly.

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                      #40
                      Thanks Fishead!

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                        #41
                        Originally posted by aitch10 View Post
                        I'm very optimistic and cheerful, but as a 39 year old who can barely walk unassisted I gotta say that hearing people who are in their 50's or 60's bemoan "negativity" makes me want to stick a fork in my eye.
                        Lol I was thinking I'd like to stick a fork in their eye!
                        He is your friend, your partner, your defender, your dog. You are his life, his love, his leader. He will be yours, faithful and true to the last beat of his heart. You owe it to him to be worthy of such devotion.
                        Anonymous

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                          #42
                          Originally posted by Jules A View Post
                          Lol I was thinking I'd like to stick a fork in their eye!
                          I think I'm one of those 50 or 60 something posters that's being criticized here. I'm actually in my 30s and newly diagnosed. I do respect everyone's right to express their subject positions here, and tried to make that clear in my initial posts. I was not attacking anyone, I was trying to carve a space for my own experience on this board and decrease my *rampant* fear to some degree.

                          I see now that the response to my attempt is to wish to stick a fork in my eye. I will not, under any circumstance, be back to this board.

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                            #43
                            Originally posted by abeautifullife View Post
                            I think I'm one of those 50 or 60 something posters that's being criticized here. I'm actually in my 30s and newly diagnosed. I do respect everyone's right to express their subject positions here, and tried to make that clear in my initial posts. I was not attacking anyone, I was trying to carve a space for my own experience on this board and decrease my *rampant* fear to some degree.

                            I see now that the response to my attempt is to wish to stick a fork in my eye. I will not, under any circumstance, be back to this board.
                            I am genuinely sorry if off handed comment bothered you. There really is a ton of positivity on this board, it's just not ALL positive.

                            If that's how it is then I say this without any intented irony - Good luck with your search for a more positive board.
                            Aitch - Writer, historian, wondermom. First symptoms in my teens, DX'd in my twenties, disabled in my thirties. Still the luckiest girl in the world.

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                              #44
                              No, no, abeautifullife, do not feel bad. It's genuinely wonderful that you are doing well. That is what I wish for all of us, with all my heart.

                              I get jealous and cranky and bitter, and I know you've worried and suffered, too, even though it's turned out better than you feared.

                              I'm not a big believer in positive thinking - I never was - but that's me. Black humour, that's what gets me through. That's a British/ Australian thing.

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                                #45
                                Wordsgood, I agree with you 100%.

                                It needs to be looked at with reality, not a sugar coated fluff story. Good for all those with minor problems, but that is a minority.

                                My Neuro likes to tell me I am doing "good", but he doesn't live with this 24/7, or knows that I continue to worsen with my legs, balance, and walking. He sees me every 4 months or so, and can't remember me with all his other patients.

                                No amount of "positive thinking" or "faith" is going to change that. I am also tired of the "I have MS but it doesn't have me" mantra.
                                YES, it does. Not by choice, it just does.

                                One poster said that they were having a bad week, but they prayed and feel much better. Ummmm...did you consider you were having a "flare"?

                                Whatever works for you, and if it is faith and prayer, then good for you.

                                I just fell at work and hit the back of my head on the floor. In front of a group of people that were quick to help, but embarrasing.
                                It must be the head injury causing this rant

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