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Thread: Stiff Person Check In

  1. #111
    Distinguished Community Member Sunshine's Avatar
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    Going to PCP today, as I am suspicious the UTI never went away and is flaring up again, making for lots of spasticity, poor sleep, etc etc, poor appetite, nausea etc,

    Hoping that an antibiotic will bring relief....DH is off work and will drive me. Happy New Year to all, and hope next year is better in so many ways.!

  2. #112
    Distinguished Community Member Sunshine's Avatar
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    Start an antibiotic yesterday and already feeling better. It could be coincidence.

    Also, I have my 130 in the morning dose of muscle relaxers, I added an Ativan tab. This was to reduce stiffness and also see if I could sleep past three in the morning. It did accomplish both.

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  4. #113
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    That’s good news that you are sleeping longer, Sunshine. Very glad to hear it.

    ANN
    Last edited by stillstANNding; 01-02-2019 at 05:11 PM.
    There comes a time when silence is betrayal.- MLK

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  6. #114
    Distinguished Community Member Sunshine's Avatar
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    The plan was to take an Ativan at my 9Pm dose along with huge Baclofen and Tizanidine, to try and sleep past 3 am and not spasm. Unfortunately I was s o. Comatose that when the 1:30 am alarm went off, i turned it off without waking up. Woke up naturally at 4:30 am realizing had missed the 1:30 dose. NOT GOOD! You cannot do that with Baclofen. SO, I immediately loaded up on the missed meds, and was a zombie for the eye doc appointment.

    I hate this disease.

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  8. #115
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    ((((((Sunshine)))))) ~

    I'm so sorry for all that you are enduring. I wish there was something I could say to help you or comfort you. Please know that I send you healing energy and prayers for your health to stabilize.

    Love & Light,



    Rose
    Mom to Jon, 49, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful Dad.

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  10. #116
    Distinguished Community Member Sunshine's Avatar
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    IVIG all day today.

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  12. #117
    Distinguished Community Member Sunshine's Avatar
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    Despite taking an Ativan in the morning and another one after lunch, I had a brief spasm of about 10 seconds for my ankle twisted to the side and I VIG yesterday. I will message the neurologist as to what to do if that happens again. The nurse was able to help stretch out the spasm and it did not spread. I am grateful that I took that second Ativan And grateful for my awesome nurse

  13. #118
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    I woke up this morning, and was envious of the days I went surfing until a few months ago. First the Red Tide stopped me. THen I became too sick with SPS to get back in the water. I know I could do it now, but the burden on my buddies is big, although I know they want to do it. And, it’s scary to be on the beach with them all out in the lineup.

    And, its also scary to be in the lineup and not know if and when I will seize up. I will try to go out soon though.

    My buddies are coming over in a fw weeks for a meetup at my house. Maybe I will share my fears and talk abou solutions.

    What I miss a lot , though, and I am sure you can relate in your own life, is the ability to have the carefree joy of running down the boardwalk just before dawn, with my board, anticipating what the waves will look life, being stunned by the beauty and paddling out just as the sun is about to peek out from above the water line like a sunny side up egg....and turning and smiling at a fellow predawn surfer, quietly , as we both commune with nature, God, the universe at the spectacular beauty and specialness of this event ...

    I miss that mightily.

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