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Thread: Keep on Moving: December 2019

  1. #1
    Distinguished Community Member Sunshine's Avatar
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    Default Keep on Moving: December 2019

    MS creates some real challenges to keep on moving. It helps to inspire each other on how to find ways to move.

    Did you stretch in your bed, swing your arms, roll side to side today? Or perhaps you did housework? Or exercised in a pool? Tracked your count of steps? Chased your cat around the home? Pushed the wheelchair wheels with your arms at the store? Post them here and we can support and egg each other on.

    REMEMBER: this is a keep on moving thread, not keep on exercising! Any moving is important— it doesnt have to be “exercise”! Even Science proves that...

    RABBIT RABBIT!

    BTW: We are only one month away from 2020– (shudder)

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    Distinguished Community Member Lazarus's Avatar
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    Glad to see this post. I have not been stretching enough and my body is yelling at me to get up and move. There is a major snowstorm set to hit tomorrow and that got me out putting tarps over 4 vehicles. That works great to remove snow with minimal effort...the word minimal is relative.

    The storm is supposed to last all day Monday into Tuesday morning. I am supposed to get rituxan on Monday and doubt I will make it. 19 years of infusions and this may be the first one I miss! We live on a small isolated farm with a narrow road that the town does plow but late.

    Maybe I will just wait for spring...let it all melt. My father in law always said “ let the guy who put it there take i t away!”
    Linda~~~~

    Be the kind of woman that when your feet hit the floor each morning the devil says:"Oh Crap, She's up!"

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    Distinguished Community Member Sunshine's Avatar
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    Good Luck Laz! You are amazing in your Keep on Moving!
    Do they reschedule your Rituxan for next week, or how does that work?
    Waiting for DH to awaken so I can do my morning swim.

    It will dip into the 40’s Monday and Tuesday night, so no swimming Tuesday or Wednesday. Wed is IVIG anyway, so that was a no go...

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    Distinguished Community Member Lazarus's Avatar
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    Quote Originally Posted by Sunshine View Post
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    Good Luck Laz! You are amazing in your Keep on Moving!
    Do they reschedule your Rituxan for next week, or how does that work?
    Waiting for DH to awaken so I can do my morning swim.

    It will dip into the 40’s Monday and Tuesday night, so no swimming Tuesday or Wednesday. Wed is IVIG anyway, so that was a no go...


    Not sure about the reschedule and the second infusion is already scheduled so , since they are given 2 weeks apart, I am not sure what will happen. The storm seems to still have some ifs in terms of timing and amounts so I will be in a quandry. I am trying to just throw up my hands and stop fretting.
    Linda~~~~

    Be the kind of woman that when your feet hit the floor each morning the devil says:"Oh Crap, She's up!"

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    Distinguished Community Member agate's Avatar
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    Any chance that the infusion could be done in your home in a case like that?
    MS, diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009.

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    Linda, I did not realize you had been doing Rituxan for 19 years. That is one reason you are able to do as much work as you do. Look what it did for Cherie. Would love to be able to take that drug.
    Virginia

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    Distinguished Community Member Lazarus's Avatar
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    Quote Originally Posted by agate View Post
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    Any chance that the infusion could be done in your home in a case like that?
    Nope. I need the emergency personnel around.
    Linda~~~~

    Be the kind of woman that when your feet hit the floor each morning the devil says:"Oh Crap, She's up!"

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    Distinguished Community Member agate's Avatar
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    It was a long shot. Since there's been talk of making Tysabri infusions doable at home, I thought maybe they'd be willing to set this up for Rituxan, but the Tysabri deal is in an experimental stage only, I think.
    MS, diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009.

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    Distinguished Community Member Lazarus's Avatar
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    Quote Originally Posted by agate View Post
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    It was a long shot. Since there's been talk of making Tysabri infusions doable at home, I thought maybe they'd be willing to set this up for Rituxan, but the Tysabri deal is in an experimental stage only, I think.
    Thanks for the thought..in the 20 years I have been doing infusions I have only had 2 serious problems during infusion but I would not want to be anywhere else but at the center.

    Actually the storm did not bring a s much snow as expected but here, on the isolated farm, it is very difficult. I almost would have ventured out if I did not have a couple of hours work to get the snow off two cars and the plow and I would be very uncomfortable leaving John alone. I tried calling a neighbor who used to plow for us but he is not around so If I clear a path to the plow and warm it up John will probably plow us out.

    But, you can see it will take many hours to do all that. Too long to get in a 6 hour infusion. So I called the main number and asked them to get a message to the infusion center that I will not make it. There are 2 infusions, 2 weeks apart so we should be able to flip the schedule and make the 16th my first one and reschedule today’s for 2 weeks after that.

    I hate it when I can not make a decision...which shows how much I need an infusion. Glad I cancelled. Now I can stop fretting.
    Linda~~~~

    Be the kind of woman that when your feet hit the floor each morning the devil says:"Oh Crap, She's up!"

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  19. #10
    Distinguished Community Member Sunshine's Avatar
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    Today I swam 1/2 mile plus 80 yards in a 86F pool and 68F air. The air is plummeting quickly and will be in the 40s tonight, so I likely will not swim tomorrow....

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