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Thread: Stiff Person Check In

  1. #131
    Distinguished Community Member Sunshine's Avatar
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    I just finished my 62nd IVIG. The right arm is getting scar tissue in the arm, so we did the left. She is hoping that giving a rest for a fw weeks will help. METOO!

  2. #132
    Distinguished Community Member Sunshine's Avatar
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    Today I took1mg Ativan which eliminated stiffening and pain in my legs for six hrs . DH took me for a nice sedate lunch, not noisy , plenty of space, ritzy, oceanfront. Then I changed into boardshorts and rashguards, walked about 60 steps to the ocean edge, and body surfed one 75F wave after it crashed down. It felt wonderful, and maybe surfing is possible on Ativan. Wha a rush :)

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  4. #133
    Distinguished Community Member Sunshine's Avatar
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    Today I really came face to face with the fact that this is the best it will get re the rest of my life. And its a pretty hard way to live.

    Moments of joy are ones to hold onto when the pain and loss breaks through.

    Sometimes I cannot decide if the disease or the side effects of the meds are worse. Theyíre both terrible.

    I try very hard to keep this board going as a way to provide centralized information.And a way to try to help others with SPS...I donít know if it helps anyone at all. But, judging for the numbers who have viewed threads and visited the board, I am assuming it helps in some way.

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  6. #134
    Distinguished Community Member Sunshine's Avatar
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    Today I began a new medication, Linzess, because Baclofen has a side effect of major constipation: in ability to eliminate waste except through anti constipation drugs ó for me a combo of Lactulose, Benefiber, Senakot all in high doses.

    A GI doc told me to start Linzess, and titrate down Lactulose to start with as it and Benefiber have uncomfortable side effects and barely do the job.

    Linzess has Side effect of explosive diarrhea when first starting it. So, one has to stay home the first three days at least. And there is , for me, worry that it can trigger spasms. The side effect can take up to 2 weeks, so, who knows what this going to do re getting away from home for IVIG, for doc appts, etc.

    Letís go on the wild ride and find out....

  7. #135
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    Formal exercise is great and a real mood lifter, or at least for me....however, note that the title of the thread is Keep on Movingó- not keep on exercising!!

    And one of the examples is moving from side to side for bedridden. Anything that keeps the body from being inert is great. Doesnít have to be formal exercise for sure....and lets not judge ourselves: this is just something to keep in mind, not to beat ourselves up for !!

    This past week, I have been using the rollator more rather than R2D2 whenever possible. I donít walk independently as much out of concern that a spasm could throw me to the ground and break a bone or fracture my skull. Thats ok, I love my Drive Rollator. I try to stand up straight, not hunch over so as to put less pressure on the back.

    So, I walked 40í to water my pool deck plants,I swept the kitchen and bathroom floors, I made a salad and some scallops, cleaned up the kitchen dishes etc., took out a trash bag, maybe did about 400 steps total, if that. Spent a lot of time on the phone managing doctor visits, call backs with docs and their nursesó too many specialists and tests in my life right now for sure.

    I work very hard at trying to stay in the moment and only spend time planning for that day and the next so as to not be overwhelmed with all that has to be done medically over the next 2 weeks. It is overwhelming otherwise. Hoping all the MD appts settle down at some point....

    Meditation and my cursory understanding of Buddhism has settled down my mind and helped with my pain. I highly recommend it. If at all curious, first read Breakfast with Buddha, a fiction book that will tantalize you. Then, come back and I can point to some nonfiction reading that can give you some ideas....am glad that this old dog can indeed still learn new tricks!

  8. #136
    Distinguished Community Member Sunshine's Avatar
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    MOre on life with SPS or any mobility issues actually:

    So, its raining out. Not a problem with able people. But, for those who arenít so able, its a dealbreaker. The electric motor carts at the grocery store are not allowed out in the rain. So, no grocery store for today: or tomorrow due to IVIG, nor Thursday due to urology procedure. The cupboard is getting low...such is life with mobility issues for sure.

    So many barriers in the world to keep problem solving around....

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