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    So my MS Psychologist told me I need friends...

    So here I am looking for friends, strength and maybe a few virtual shoulders to cry on!

    I have been diagnosed with R/R for over a year and a half, they are leaning to PP now. I have lots of lesions in the brain with some "dead" spots, and a few on my spine C2-C6 areas. I have Lupus too, and have fought that for over 18 years now. I also have a long list of other health problems mostly auto-immune. I woke up one day with a dead arm, numb, paralyzed, and couldn't feel a thing - thinking I had a stroke, I was admitted into the hospital, 3 days later I had a firm dx of MS.

    I am on Rituxan so it can treat both the MS and Lupus, along with about 20 other pills just to keep me functioning like a zombie..lol

    Since my diagnosis I have; been homeless, ended my marriage of 21 years, left my job, filed for disability (still fighting for) raising my daughter on my own, and now I am loosing my legs to constant spasticity.

    My family is over 3K miles away - and I don't have friends who hung around after the dx - nobody could handle it. I stay in my area because of the world renowned doctors at the Cleveland Clinic..

    My symptoms are long, painful and has given more to handle that Lupus ever did...

    I wonder why on earth I am still here? LOL

    My name is Nikki!

    #2
    Originally posted by Nikkidart40 View Post
    So here I am looking for friends, strength and maybe a few virtual shoulders to cry on!

    I have been diagnosed with R/R for over a year and a half, they are leaning to PP now. I have lots of lesions in the brain with some "dead" spots, and a few on my spine C2-C6 areas. I have Lupus too, and have fought that for over 18 years now. I also have a long list of other health problems mostly auto-immune. I woke up one day with a dead arm, numb, paralyzed, and couldn't feel a thing - thinking I had a stroke, I was admitted into the hospital, 3 days later I had a firm dx of MS.

    I am on Rituxan so it can treat both the MS and Lupus, along with about 20 other pills just to keep me functioning like a zombie..lol

    Since my diagnosis I have; been homeless, ended my marriage of 21 years, left my job, filed for disability (still fighting for) raising my daughter on my own, and now I am loosing my legs to constant spasticity.

    My family is over 3K miles away - and I don't have friends who hung around after the dx - nobody could handle it. I stay in my area because of the world renowned doctors at the Cleveland Clinic..

    My symptoms are long, painful and has given more to handle that Lupus ever did...

    I wonder why on earth I am still here? LOL

    My name is Nikki!
    Hi Nikki

    Welcome! Thank you for sharing your story with us.

    Looks like you have been through a lot of stuff, and are still dealing with more.

    It must be really rough for you, with your family being so far away, and raising your daughter on your own.

    Fingers crossed, you will be approved for disability income soon.

    You can feel free to vent as often as you need to. Hopefully you'll find understanding here, and a kinship with other members who are experiencing similar issues.

    If you have questions, just ask and we'll be glad to help if we can.

    Looking forward to more posts from you Nikki!

    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


      #3
      Welcome Nikkidart40.

      I am so sorry to hear of both your physical and personal struggles. You have definitely been thru more than most. I hope you and your daughter can catch a break.

      In addition to this board, is there a MS support group in your area? If so, it may help you find some local support and friendship in your area. While they may not identify with all you have been through, a lot will understand due to their own MS struggles.

      I look forward to more posts from you.
      Kathy
      DX 01/06, currently on Tysabri

      Comment


        #4
        Hi Nikki,
        Welcome! It sounds like it's been quite a long (and lonely!) road that you've had to travel! It does help to have friends to lean on and cry on their shoulders. It's rough not knowing what's in store as the disease takes its course.

        Can I suggest that you look for MS support groups in your area? I've found that it really helps to be able to sit and talk with people who understand what you're going through. If you look at the National MS Society website, they should be able to help you find your local page with events and support groups.

        Again, welcome, we are here for you!

        Comment


          #5
          Hi, Nikki! Welcome! I am a newer member here but it has DEFINITELY helped me to read what others post and to chime in on a few threads too!

          I know what you mean about Cleveland Clinic-- I travel about 7 hours to visit a doc there. I was DX the last couple of months and have gone back twice since DX to get the first two (half) doses of Ocrevus. The level of care is phenomenal and far surpassed what I even expected. It's really a blessing to be able to go, so I'm grateful for that.

          What you've been through so far is more than most will ever face. And then add MS, Lupus and other autoimmune issues to that?!?! That's more than any one person should have to bare. It has to be a testament to your strength and resiliency that you're here and posting your story. Thank you for sharing it.

          I look forward to chatting more with you in the future!
          DX 3/2018; started Ocrevus 3/30/18 (EDSS 2.5)

          "Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day."
          - 2 Corinthians 4:16

          Comment


            #6
            welcome

            Welcome.

            You can do this.

            Just a couple of things to look at. The NMSS is studying two diets as to play a role in MS. Look at them. See if either of them are possible in your situation. They are the Swank diet and the Whal protocol.

            Come join us in chat on this website, sometime.

            This is the website, where we understand.
            God Bless and have a good day, Mary

            Comment


              #7
              Hi Nikki! Just wanted to add my warm welcome too and am glad you reached out to us. I'm also sorry to hear of your varied problems you've had to face in such a short amount of time.

              I also lost a fair amount of friends years ago after my diagnosis which was really not fair, being I was still the same person as before! Anyway, I searched out our local MS support group and still have a very close friend from that group. Follow this link https://www.nationalmssociety.org/Re...-Support-Group to find a group in your area if you want.

              In the meantime, you have us!
              Sending you virtual ((HUGS)) fellow traveler
              1st sx '89 Dx '99 w/RRMS - SP since 2010
              Administrator Message Boards/Moderator

              Comment


                #8
                Originally posted by Nikkidart40 View Post
                So here I am looking for friends, strength and maybe a few virtual shoulders to cry on!
                We'll be your friends. But, we're only online friends. I agree with the suggestion to find an MS Support group.

                If you have transportation, another suggestion is to seek out other opportunities in your community, such as volunteering at a humane society to pet cats (maybe there will be people there you can befriend), or other volunteer opportunities that don't require much physical effort. For example, our local schools participate in a program sponsored by Big Brothers and Big Sisters called "Bigs in Schools". Reaching out to others can sometimes help us as much as being reached out to by others.

                You don't mention your age, but if you are over 55, many communities have senior centers with activities that you could consider. Or, do you have church connections? If those are the friends who abandoned you, perhaps you need a new church.
                Originally posted by Nikkidart40 View Post
                I have been diagnosed with R/R for over a year and a half, they are leaning to PP now. I have lots of lesions in the brain with some "dead" spots, and a few on my spine C2-C6 areas. I have Lupus too, and have fought that for over 18 years now. I also have a long list of other health problems mostly auto-immune. I woke up one day with a dead arm, numb, paralyzed, and couldn't feel a thing - thinking I had a stroke, I was admitted into the hospital, 3 days later I had a firm dx of MS.
                My MS also began with me (and doctors) thinking I'd likely had a stroke. Although that was ruled out three months later, it took almost 2 years to dx MS.
                Originally posted by Nikkidart40 View Post
                I am on Rituxan so it can treat both the MS and Lupus, along with about 20 other pills just to keep me functioning like a zombie..lol

                Since my diagnosis I have; been homeless, ended my marriage of 21 years, left my job, filed for disability (still fighting for) raising my daughter on my own, and now I am loosing my legs to constant spasticity.

                My family is over 3K miles away - and I don't have friends who hung around after the dx - nobody could handle it. I stay in my area because of the world renowned doctors at the Cleveland Clinic..

                My symptoms are long, painful and has given more to handle that Lupus ever did...
                You have more than your share of challenges; I'm sorry. Perhaps you could also ask your psychologist for suggestions regarding where to pursue looking for friendships.
                Originally posted by Nikkidart40 View Post
                I wonder why on earth I am still here? LOL

                My name is Nikki!
                I'm glad you're here. Please come back.
                ~ 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


                  #9
                  Originally posted by Nikkidart40 View Post
                  So here I am looking for friends, strength and maybe a few virtual shoulders to cry on!

                  I have been diagnosed with R/R for over a year and a half, they are leaning to PP now. I have lots of lesions in the brain with some "dead" spots, and a few on my spine C2-C6 areas. I have Lupus too, and have fought that for over 18 years now. I also have a long list of other health problems mostly auto-immune. I woke up one day with a dead arm, numb, paralyzed, and couldn't feel a thing - thinking I had a stroke, I was admitted into the hospital, 3 days later I had a firm dx of MS.

                  I am on Rituxan so it can treat both the MS and Lupus, along with about 20 other pills just to keep me functioning like a zombie..lol

                  Since my diagnosis I have; been homeless, ended my marriage of 21 years, left my job, filed for disability (still fighting for) raising my daughter on my own, and now I am loosing my legs to constant spasticity.

                  My family is over 3K miles away - and I don't have friends who hung around after the dx - nobody could handle it. I stay in my area because of the world renowned doctors at the Cleveland Clinic..

                  My symptoms are long, painful and has given more to handle that Lupus ever did...

                  I wonder why on earth I am still here? LOL

                  My name is Nikki!
                  OMG I feel for you I have as long a list of health issues about as long as yours COPD as well but don't give up trying is the main thing you may not be able to do anything for a bit then other times you can do a lot it's about taking your time and paising yourself and if you know that you have a big day ahead then rest a few days if need be but don't let yourself get into a rut because unse you get to weak to keep going it's kinda hard getting better and back on track. Trusting is hard for myself but I don't have a choice but I do have family that will help me out at times so I'm lucky maybe juin a local support group and they may know of Support and all the national MS society can help you find a local group. Good luck on everything.

                  Comment


                    #10
                    You´re still here because there must be something mighty special about you in that you´ve taken on so much, no choice there, and still keep going. When you´re going through hell, keep going. If your family support system is far away, please look into MS centers near them. The CC is great but not the only game in town.

                    Comment


                      #11
                      Need friends

                      Originally posted by Nikkidart40 View Post
                      So here I am looking for friends, strength and maybe a few virtual shoulders to cry on!

                      I have been diagnosed with R/R for over a year and a half, they are leaning to PP now. I have lots of lesions in the brain with some "dead" spots, and a few on my spine C2-C6 areas. I have Lupus too, and have fought that for over 18 years now. I also have a long list of other health problems mostly auto-immune. I woke up one day with a dead arm, numb, paralyzed, and couldn't feel a thing - thinking I had a stroke, I was admitted into the hospital, 3 days later I had a firm dx of MS.

                      I am on Rituxan so it can treat both the MS and Lupus, along with about 20 other pills just to keep me functioning like a zombie..lol

                      Since my diagnosis I have; been homeless, ended my marriage of 21 years, left my job, filed for disability (still fighting for) raising my daughter on my own, and now I am loosing my legs to constant spasticity.

                      My family is over 3K miles away - and I don't have friends who hung around after the dx - nobody could handle it. I stay in my area because of the world renowned doctors at the Cleveland Clinic..

                      My symptoms are long, painful and has given more to handle that Lupus ever did...

                      I wonder why on earth I am still here? LOL

                      My name is Nikki!

                      Hi Nikki, Are you still looking for friends. I need friends too. People that don't understand us or our disease, tend to run away. It is so sad because that is when we need friends to help us. I am so sorry for what you are going through. You are so brave. I wish I could do something for you. I can listen to you, you can tell me anything, and I can be your friend. Carol

                      Comment

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