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    About me

    Hello to everyone! I'm new to this site, and well, new to a lot of things. Since my diagnosis of RRMS in 2010, everything in my life has changed. I had a happy marriage, a home I loved, a successful career, friends & family, hopes & dreams and above all, I knew who I was. Now, pretty much all that is gone.

    I was fortunate that the first true signs that something was wrong led to a speedy diagnosis and I quickly began treatment with Copaxone. Unfortunately, I still had worsening symptoms, developing issues with nerve pain, gait problems, severe fatigue, falls resulting in broken bones and my worst problem, cognitive issues. I switched to Tysabri, and stayed that course until I found myself in the position of having no income and no medical insurance. So, I've not been on disease modifying drugs, nor medical care for the past 6 months.

    It wasn't long after my diagnosis that I found myself unable to work, my husband was unable to accept the fact that our lives were changing and was unwilling to stand by my side. My sons began to see me as "frail and fragile", the friends I had, became distant and aloof.

    My divorce and lack of income, forced me to make huge changes. In the past year, I left my home state of Oregon moving first to California, then Kentucky, and finally landed in Maryland 3 months ago, living with my son and his family.

    I am now on social security disability, and recently secured healthcare through the state, and started to receive medical care once again, but am struggling in with the process of navigating and understanding what care I can access and what doctors I am able to see.

    I admit the fact the I find myself depressed, and above all, very alone. While I have my son who is wonderful and caring, I love that I am able to be with my granddaughters each and every day, and have a daughter-in-law I love, I find myself very alone, and can't find my way to building a new life, filled with smiles, hopes and dreams.

    I came to this site with the hope that perhaps I will be able to make some connections, and find my way to rebuild my life. In my heart, what I truly want, is to have my life back. Understanding I will never have the life that was once mine again, has been a difficult realization. I know somewhere, someone else has walked a path that is similar to mine, at least in part, so I hope there might be some words of wisdom someone might be willing to share.

    #2
    Hi Raelene and welcome to our MSWorld! It's great that you came here to get connected with us and believe me, there are many of us that have walked your same path. Some trails are different, but having MS and making some adjustments (some more life altering that others), is our common thread that holds us all together. We will walk this path with you!

    I think it is difficult to make changes no matter what the circumstances. You certainly have had your share and I'm sorry that your world has been turned upside down. We, as humans, are always faced with making adjustments and I think with having MS, those adjustments are more in your face!

    It sounds like you have landed in a safe and loving place with your son, his wife and your granddaughters and I truly hope that with time you will emerge on top of your world again filled with new friends, hope and dreams!

    And it will happen with time. I know when I had to quit work that I loved and go on SSDI, I was so lonely. I came here for support and comfort. I also joined a local MS support group and made new friends who understood - my old friends just kinda faded away~~

    You will meet some incredibly kind and compassionate people here and I hope you make new friends! We also have live chat here - there is a chat time on Mondays at 8pm ET called "Laughter is the Best Medicine" that people seem to enjoy and can forget about living with MS!

    I hope this new chapter of your life can be rich and fulfilling and again, welcome! Take care of yourself and know you are not alone!!
    1st sx '89 Dx '99 w/RRMS - SP since 2010
    Administrator Message Boards/Moderator

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      #3
      Hello Raelene and welcome to MS World! I am so sorry you are going through all of this! It does sound like you have a good attitude though.

      You might want to contact your local MS society. They have many resources for people like us. They also have support groups in your area so you can meet other people with MS face to face in addition to our website.

      You may also want to see a counselor for your situational depression. Medicaid should cover that.

      It sounds like you have a great son and daughter and law. I know you would rather be on your own, but enjoy the grandchildren for now and get stronger. If you get back on Ty you may eventually get back in a position to be on your own with your Social Security Disability, and Medicaid.

      I wish the best for you! Check around our site and ask and answer questions you see or have. Also there are many choices of chat rooms to join so give those a try as well.

      Let us know how you are doing, OK?

      Take care
      Lisa
      Disabled RN with MS for 14 years
      SPMS EDSS 7.5 Wheelchair (but a racing one)
      Tysabri

      Comment


        #4
        Hi Raelene,
        Your story like so many here, really touched my heart.

        MS is indeed a journey, full of bumps in the road and some huge potholes. But I am so glad that you have a wonderful home with your son, daughter in law and granddaughter. Those are blessings that so many others do not share.

        I can second the suggestion to contact the local chapter of the NMSS and they should be able to point you in the direction of a good support group.

        And perhaps, once you feel comfortable in your new surroundings maybe find other outside social activities that you can join in.

        In the meantime, please take advantage of the wonderful resources that MSWorld has to offer. Our members are so wonderful. They can help answer questions and give you support with the MS, as we all "get it".

        We look forward to seeing you become a part of this very special family.

        God Bless and good luck!

        Comment


          #5
          if I keep on doing.......

          Thank you for the supportive suggestions. I've never been a person that participates in group setting situations, perhaps it's time to give something like that a try. One of my favorite quotes ....."if you keep on doing what you've always done, you'll keep on getting what you've always got". Since what I've always done has left me in this lonely place in my life, maybe I should heed those very words, and open myself to what possibilities may lay ahead of me.

          Comment


            #6
            I can relate to some of your losses. What helps me is listening to pandora- john mayer, jack johnson and the lumineers are favorite channels. I learned how to make crocheted crowns and will be sending a batch to the local children's´hospital for kids undergoing chemo. The pattern is easy and fast and I taught myself how to crochet- had to watch a video over and over and over, but eventually on crown no. 5 figured it out. I have been reading the blog of wheelchair kamikaze and while he has some dark posts, others are funny and/or uplifting. Can you start a window sill herb garden? Growing something always helps. Can you volunteer to read aloud at story hour?

            The spousal abandonment for me was worse than the MS dx. My mantra has been, "Better not bitter." The book, Trust Your Gut, is great- written for IBS sufferers but it´s really for everyone with a gut.

            You´ve been through the wringer- be kind to yourself.
            Hugs,
            Temagami

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