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    #16
    I'm still standing!

    Literally!

    I am doing ok and I still post. Just not as much. Love this site and this group!!
    Tawanda
    ___________________________________________
    Diagnosed with Multiple Sclerosis 2004; First sign of trouble: 1994

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      #17
      In my case I have been relapse free for 3 years now on Gilyena and working my tail off. After a scare and 2 years not working I got a new Neuro and he got me on a good path. So I went back to work full time and I pick up side work whenever I can. Which means I end up working 40-70 hours a week.

      While everything is going pretty well the fact is I still have MS and that kind of schedule takes a toll so most days I just get home stare at the TV for a couple hours then sleep until I have to do it again the next day. It is hard but after 2 years with a cane and 10-12 hours of sleep a day plus assorted MS issues and just generally feeling like crud 24/7 I feel blessed to be able to do it.

      I'm glad this forum is still here for days when I feel up to checking it. Thanks mods for keeping it alive it is a fantastic resource and without it's help during the dark years I'm not sure I would be doing as well as I am now. Hopefully it can guide other people towards successful living with MS.
      Rise up this mornin, Smiled with the risin sun, Three little birds Pitch by my doorstep Singin sweet songs Of melodies pure and true, Sayin, (this is my message to you-ou-ou

      Comment


        #18
        I'm still standing!

        Originally posted by Tawanda View Post
        Literally!

        I am doing ok and I still post. Just not as much.
        That's great to know, Tawanda!

        Originally posted by Tawanda View Post
        Love this site and this group!!
        You've been a very thoughtful and valuable member here for many years! Thank you!

        Take Care
        PPMS for 26 years (dx 1998)
        ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

        Comment


          #19
          Originally posted by Myoak View Post
          Does caring change anything? Can caring improve health?

          What do you think?
          I've been thinking about Myoak's question.

          My feeling is "yes". Connections with others creates resilience. Connections create caring. Caring about others is good for us. being cared about by others is good for us.

          Gratitude creates resilience. If we are connected to and cared about by others, those connections offer a lot to be grateful for.
          ~ Faith
          MSWorld Volunteer -- Moderator since JUN2012
          (now a Mimibug)

          Symptoms began in JAN02
          - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
          - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
          .

          - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
          - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

          Comment


            #20
            Tawanda - glad to hear. I now have Elton John's "I'm still standing" playing over and over in my head!

            TaoWarrior - great to hear your neuro change and treatment change have you feeling better and back working. I am sure it is tough.

            Mamabug - loved your thoughts.
            Kathy
            DX 01/06, currently on Tysabri

            Comment


              #21
              Tawanda- Glad you are still standing and doing ok.

              Shoo - I do that a lot of days.

              TaoWarrior -Thats fantastic Gilyena working so well for you. I can't imagine a 70 hr work wk.

              Mama buy- Love what you said, it is so true.
              God Bless Us All

              Comment


                #22
                Originally posted by REG53 View Post
                Mama buy- Love what you said, it is so true.
                Thanks, Reg53.

                I have so much to be grateful for. I have a lot of "right tribe" friends and acquaintances.

                Although MSWorld friends are cyber friends, and we haven't met in person (usually), I hope that we can be "right tribe" acquaintances for each other. I hope that we care for and about each other. We can add to each others' buckets of resilience, which is one factor (of many) that can contribute to health.
                ~ Faith
                MSWorld Volunteer -- Moderator since JUN2012
                (now a Mimibug)

                Symptoms began in JAN02
                - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
                - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
                .

                - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
                - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

                Comment


                  #23
                  Wheel chair kamikaze hasn’t put anything up on his blog since last January ? I liked reading his stuff. I think he had just started rituximab and was having some issues with UTI’s and kidney stones. Does anyone know any updates on him ? As far as MS goes he was pretty informative and really could lay it out there , simply. I’ve been checking now almost every day for nine months and nothing. I fear the worst.
                  It was one agains't 2.5million toughest one we ever fought.

                  Comment


                    #24
                    Originally posted by oceanpride View Post
                    Wheel chair kamikaze hasn’t put anything up on his blog since last January ? I liked reading his stuff. I think he had just started rituximab and was having some issues with UTI’s and kidney stones. Does anyone know any updates on him ? As far as MS goes he was pretty informative and really could lay it out there , simply. I’ve been checking now almost every day for nine months and nothing. I fear the worst.
                    oceanpride ~

                    I haven't seen anything new on Marc's blog for a long time either.

                    Hope he is ok.

                    Take Care
                    PPMS for 26 years (dx 1998)
                    ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

                    Comment


                      #25
                      Does anyone think it's possible that the younger PwMS are diagnosed quicker, put on a DMT quicker, and can stay in the workforce longer (or until they can retire at a suitable age like everyone else?)? I know when I was working it wasn't like I had the same kind of time to be here as I do now. I am hoping that the chirping sound of crickets that we've been hearing at MSW is a good thing. If we all could get repaired after the fact, none of us would need this site. Until that breakthrough, thanks to all who travel here, and especially those who join/post as well.
                      Tawanda
                      ___________________________________________
                      Diagnosed with Multiple Sclerosis 2004; First sign of trouble: 1994

                      Comment


                        #26
                        Originally posted by Tawanda View Post
                        Does anyone think it's possible that the younger PwMS are diagnosed quicker, put on a DMT quicker, and can stay in the workforce longer (or until they can retire at a suitable age like everyone else?)? ... If we all could get repaired after the fact, none of us would need this site.
                        This is a hopeful thought. Perhaps one reason that we see less traffic on MSWorld is the that younger PwMS have less need for our support?
                        ~ Faith
                        MSWorld Volunteer -- Moderator since JUN2012
                        (now a Mimibug)

                        Symptoms began in JAN02
                        - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
                        - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
                        .

                        - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
                        - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

                        Comment


                          #27
                          Originally posted by Tawanda View Post
                          Does anyone think it's possible that the younger PwMS are diagnosed quicker, put on a DMT quicker, and can stay in the workforce longer (or until they can retire at a suitable age like everyone else?)? I know when I was working it wasn't like I had the same kind of time to be here as I do now.
                          Yes, that is very possible. I became much more active here after I retired on disability.

                          Also, there are many more MS forums available than there used to be, and there are also MS support social media sites on Twitter, Facebook, etc.

                          Take Care
                          PPMS for 26 years (dx 1998)
                          ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

                          Comment


                            #28
                            I think it is part of it. I see younger people (20s, 30s, early 40s) at my infusions who are doing well. Tysabri their first DMT, no new relapses since starting on Tysabri, no worsening of symptoms, keeping up with kids and still working. Some of them are now over 5 years out from diagnosis.

                            I had asked before if they ever came here. They said that they really didn't feel the need. They were also intimidated by reading more progressive stories on any site, as it represents their fears.

                            They mostly get support and understanding from people getting infusions, and we do have a small closed Facebook group for people at our infusion site. There are a few members who have more progressive symptoms and use canes, walkers, and wheelchairs. I guess they are not intimidated by them because they know their stories.

                            That's what I learned from talking to folks.
                            Kathy
                            DX 01/06, currently on Tysabri

                            Comment


                              #29
                              I know I have joined a closed Tysabri FB group, and I really try to present the new information on Tysabri to encourage others to begin and continue on the drug. I come here once a day to make sure Myoak hasn't downloaded new information that is important to add to my collection, LOL. That man is an unbelievable resource!

                              Comment


                                #30
                                Originally posted by Tawanda View Post
                                Does anyone think it's possible that the younger PwMS are diagnosed quicker, put on a DMT quicker, and can stay in the workforce longer (or until they can retire at a suitable age like everyone else?)?
                                For sure that is a factor in my case. I started Gilenya during trials and have been on it ever since. I was DX 3 years after first symptoms and started G 2 years after that. So I guess that makes it almost 10 years on G with something like only 2 relapses in that time.

                                Let me tell you I am super apreciative of those who came before me and suffered so much and built a network of support, and research that has allowed me to have so much success. Sadly the flip side of that is being mostly normal means I'm not on here as much to pass on that support.

                                So thank you to all the "early adopters" who's stuggles have lead to my success.
                                Rise up this mornin, Smiled with the risin sun, Three little birds Pitch by my doorstep Singin sweet songs Of melodies pure and true, Sayin, (this is my message to you-ou-ou

                                Comment

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