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Waiting Room at the MS clinic...EEEK!

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    #61
    finally, a voice of reason ...

    Originally posted by Thinkimjob View Post
    I still do not understand why we all go along with the charade that MS is really not that bad. Oh, it's treatable. So is meningococcal disease. So is a brain tumour.

    I understand about not frightening people early on, lest they despair, but Lord spare us, this is not a dose of the 'flu. This is about as serious as it gets.
    Thank you for voicing what I feel. All the "be brave" crap is so not working for me right now.
    And, for me, I want to know what to expect.

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      #62
      there are different types of MS. Is that ever mentioned in publicity

      I did watch the campaign interviews that our "newscast" did on the Romneys. I just want to state, that not once did Ann Romney state which "type" of MS she has. She does have about four "assistants" and a "stay at home husband."

      I understand that for political reasons, she needed to project that her MS isn't a big deal. And I hope she doesn't have much trouble with her MS.

      I understand that for political reasons, she didn't state the graphic problems that individuals with "primary progressive MS deal with.

      I'd better stop now, so I don't used a bunch of four letter words. : ) I know some people do understand, but the majority don't. And I try not to make too many people sad. It just irritates me that my husband mentions that I have been "awful grumpy today, don't U feel well?"

      Well, let's see, this wheelchair, this food,
      Ya all know. I'm not trying to complain, but sometimes . . . . . . . .. . . . . . . . . . . . .

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        #63
        Marie, yes! You never hear about PPMS or SPMS in the media!

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          #64
          Originally Posted by Thinkimjob View Post
          I still do not understand why we all go along with the charade that MS is really not that bad. Oh, it's treatable. So is meningococcal disease. So is a brain tumour.

          I understand about not frightening people early on, lest they despair, but Lord spare us, this is not a dose of the 'flu. This is about as serious as it gets.

          Originally posted by msgijo View Post
          Thank you for voicing what I feel. All the "be brave" crap is so not working for me right now.
          And, for me, I want to know what to expect.
          Amen! I agree with you both. MS shouldn't be underestimated and even as a newly diagnosed person I wanted an accurate prognosis.

          Being smug about our ability to fight this miserable disease is largely denial, imo.
          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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            #65
            Grateful

            When you walk through the waiting room and see the people who can't, then yeah, I say it is definitely time to be grateful.

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              #66
              As a PPMSer, I agree with feeling annoyed with people's reaction, especially "Oh, they have all kinds of new drugs to treat that!", followed closely by "Oh, I know someone who has that, and s/he is more active than most people I know!"

              I realize they probably mean well, but it's a really bad idea in general to assume that you know more about a disease than a person who has it.
              PPMS
              Dx 07/13

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                #67
                Originally posted by Tawanda View Post
                Went for my about my millionth MS Specialist appt. I never wait long, but I never know what kind of shape the other MS patients will be in.

                Yesterday, they were all advanced cases. I don't know whether to be depresses or grateful.
                As a person who had MS for likely 30 years before I was diagnosed and had few outward symptoms -- then had quite the slide downhill as doctors tried to "help" me-- this is what I'd like to say when people turn their eyes and avoid me: have compassion. I used to run in fear myself, but that meant I lost a chance to help someone, to learn their story, to open up and share mine. We're all in this together, just at different places, and we owe each other respect and support. In a decade or two, you will wish that for yourself.

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                  #68
                  Poppy, well said.

                  Related, I am starting an MS course/group in the spring. Spoke to the facilitator today and she mentioned that there are physically high functioning patients that decide not to go to the group when they find out there will be lower functioning patients even though the information is relevant to all stages.

                  Anyway, my heart dropped and was reminded of this thread and the use of terms like "creeps me out", etc. These terms can be hurtful whether you mean it to be.

                  We are all in this awful mess together. Let's try and support one another!

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                    #69
                    Originally posted by misslux View Post

                    Anyway, my heart dropped and was reminded of this thread and the use of terms like "creeps me out", etc. These terms can be hurtful whether you mean it to be.

                    We are all in this awful mess together. Let's try and support one another!
                    Here, here. There but for the grace of God...etc. No one wants to be pitied. Think about it, people.

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                      #70
                      Thank you MissLux and Poppy for bringing some sensitivity to this issue.

                      Some of the postings on this forum have really stung me and I mentioned it - gently of course - and every now and again I'm stung again.

                      With that said, I've also been touched with several postings and am very grateful for those MSers who bring compassion and kindness this issue.

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                        #71
                        Sorry to offend

                        Originally posted by misslux View Post

                        Anyway, my heart dropped and was reminded of this thread and the use of terms like "creeps me out", etc. These terms can be hurtful whether you mean it to be.

                        We are all in this awful mess together. Let's try and support one another!
                        I agree. "Creeps me out" sounds like a knee jerk, honest reaction but hurting other MSers' feelings was unfortunately the result.. It is not the patients that we are scared of...we are, albeit selfishly, scared that we are looking at ourselves. We don't know when or how, but how often does MS end well? Facts: MS is chronic. MS is progressive. This is what is creepy. Not the patients themselves.

                        Once again, the particularly advanced patient with me in the waiting room with me was uncommunicative and completely paralyzed. I could never have initiated a conversation. The Neuro spoke only with her aid.

                        I say this over and over again on this Board that no matter what you may think, we ALL could be doing worse. The fact we can get on this Board and discuss this disease and our feelings is a luxury that people with really advanced MS are not a part of.

                        My MS mother couldn't talk or move let alone type. Her facial expressions were frozen. My family had to guess at what she needed and did the best we could to keep her comfortable. The lady in the waiting room was like that. The only MSer I ever saw that was worse was Annette Funicello. Her body had actually shriveled up and gnarled to the point of being unrecognizable as a once thriving human being.

                        I need to live in the moment, and perhaps even in denial. As the saying goes, show me a man with no shoes and Ill show you a man with no feet. Right now I am the former, but I have some decent odds of being the latter one day if my mother's MS is any indicator for my future with the MonSter.

                        10 years after dx and I have to keep my tv on all night to drown out all my negative thoughts about MS. God I hate this disease!
                        Tawanda
                        ___________________________________________
                        Diagnosed with Multiple Sclerosis 2004; First sign of trouble: 1994

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                          #72
                          I do that, too, Tawanda. ipad podcasts, TV, radio, audiobooks, music, all night, anything just to drown out my thoughts. I really don't like silence. Used to love it.

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                            #73
                            Originally posted by Tawanda View Post
                            My MS mother couldn't talk or move let alone type. Her facial expressions were frozen. My family had to guess at what she needed and did the best we could to keep her comfortable. The lady in the waiting room was like that. The only MSer I ever saw that was worse was Annette Funicello. Her body had actually shriveled up and gnarled to the point of being unrecognizable as a once thriving human being. :

                            Hi Tawanda,

                            I wish we could be friends in real life. I know you hate the disease because of your family history. I hate my mother's illness and mine, but I also selfishly wish she could have been a whole person for me, to protect me and do mother stuff. I know the video that you're talking about. I force myself to watch it and the Tina in the UK video too, why? So I keep the Ty needle in my arm. Just put a pillow over my face please if I wind up like that.

                            I like it silent though, like a tomb or a museum. Just my crotchety old before its time brain I guess. Sometimes upbeat music pulls me out of it. I live in a zoo and work in bedlam though. I'm moving next month to a quieter and more expensive place. It will even have a little art studio. It is time to eat desert first.

                            Comment


                              #74
                              I know the first few years of diagnosis, I had a tough time as well. When I did see someone with progressive or just a bad lesion location that left them with limited mobility, I couldn't make conversation. I would say hello, but my mind would race and I would see myself in their position.

                              As my knowledge of MS increased, as well as acceptance of having MS, I could control these thoughts, and conversation then came.

                              That being said, since I present with mostly "invisible" symptoms, I was twice dismissed by people since I "didn't have it bad", without even a discussion.

                              I try to remember this and remind myself that you can't assume anything about a person or their life based on appearance.
                              Kathy
                              DX 01/06, currently on Tysabri

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                                #75
                                Originally posted by Tia1 View Post
                                When I see someone struggling, I often say a prayer for them. Not out of pity, just that they have strength to deal with their life and that they can still find the joy that is in the day. Crappy day or not, the sky is still blue and on cool days, the sun rays are a welcomed treat. And I am grateful for whatever abilities that I have. Gratitude over fear! and when you fear tomorrow, let it make us all take advantage of today.
                                This is how I try to live and think also.

                                My MS has been very unstable lately and I have been spending a lot more time in waiting rooms. I try to acknowledge and speak to people around me without regard to their level of disability.

                                But when I am talking to someone that is really challenged, I am always paranoid that they can see me squirming.
                                I can't help it. The idea of complete loss of physical control over myself is terrifying.

                                I have suffered some real losses over the past 6 months.
                                Sometimes the waiting room is like a nightmare. I feel like "Scrooge" being forced to look at "Christmas Future".
                                (unfortunately we never wake up from this dream.)

                                The attitude of gratitude is a great... but some of the time I still want to scream TRUCK!!! (or something that sounds like that)

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