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Thread: September Chit/Chat

  1. #191
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Jeanie)))))) ~

    Our prayers are with you all the way there and back home again. May it be smooth sailing, and may you find joy in your reunions with your friends and your family.

    I will be looking forward to hearing all about your adventure upon your safe return.

    God is your Co-pilot, Jeanie.

    Blessings and safe travels ~

    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. Our Angel Jon received his wings April 2019. Now, they watch over Jim and me.

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  3. #192
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    Safe journey, Jeanie.

    ANN
    There comes a time when silence is betrayal.- MLK

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  5. #193
    Distinguished Community Member Sunshine's Avatar
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    Wow Jeanie, you truly re amazingly adventurous! May the whole journey go your way :)

    On your way to St Augustine, from JAX, instead of I95 , go south on A!A from Ponte Vedra , down almost to the Vilano Beach crossover to I95 in St Augustine. It is a beautiful ride, and you go right through national (?) park lands on the beach: You can see the deserted ocean in parts...

    Enjoy your amazing adventure :)
    If you get into trouble in JAX, you luckily have the Mayo right there to expertly help out :)

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  7. #194
    Distinguished Community Member nuthatch's Avatar
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    Thinking of Jeanie and wondering how her trip to and the reunion went. Hope all went well and she's enjoying time with family today.

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  9. #195
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    ((((((Hugs to All)))))) ~

    nuthatch ~

    I've been thinking about Jeanie too and praying for safe travels for her. I hope she is having a wonderful time and every moment is worth all that she endured to take this trip.

    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. Our Angel Jon received his wings April 2019. Now, they watch over Jim and me.

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  11. #196
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    I hope Jeanie has a good trip home tomorrow. I use to enjoy taking trips by myself, out on the highway just going at my own pace. I hope she does enjoy all of this trip. Maybe she will have some fun stories to tell us when she gets back.
    Virginia

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  13. #197
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    I have something going on that I have not mentioned here before. I have to get up at night to go to the bathroom every two hours most of the time. Sometime it is every 1 3/4 hours and sometime every 2 1/4, however I can count on it being about every two hours. This has been ruining my sleep and leaving me very tired for several years.

    I was told probably 10 to 15 years ago (before I started having to get up at night) that I had a problem with a valve. I went back to the Uro/Gyn two years ago and told her about having to get up during the night. She says she doesn't think I have a problem with the bladder. She thinks it is that valve.

    Yesterday I left home about 3PM and I didn't get groceries put away and clothes changed until after 7PM, yet I did not have to go to the bathroom one time during that period. I had water with my dinner and still continued to grocery shop for an hour and come home, make a couple of trips in from the car, put the groceries away and didn't even think about going. It must have been at least 7:30 to 7:45. I can often do this during the day, but there is something about laying down that triggers whatever valve it is to start giving problems. I have another appointment to see the Doctor about this in October, but I don't know what good it does. This is a big problem because I need the sleep and rest. I do not want any surgery and I don't want the pills that dry you up, especially since I don't have that problem during the day. Not sure what the answer is or even if there is an answer.
    Last edited by Virginia; 09-23-2019 at 09:20 AM.
    Virginia

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  15. #198
    Distinguished Community Member Sunshine's Avatar
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    Your kidneys output large amounts of urine at night, so you will have to pee more. But every 2 hours seems like a lot.

    Do you drink lots water during the day, like 8-10 oz every hour? You want to drink plenty during the day for many reasons, but also to flush teh bladder so urine doesnt fester and grow bacteria.

    Might she be talking about the muscle at the bottom of the bladder? Might the top of the bladder muscle be working well, but the bottom one opens and shuts unreliably?

    Thatís my problem. Urotraxol seems to have finally helped this problem. Its a smooth muscle relaxer that opens up the bottom of the bladder so I can pee during day (I was only peeing well at night, like you). Its common in MS. Its a type of neurogenic bladder called Detruser-Extruser Dyssenergia or something like that.

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  17. #199
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    Thanks for the info Sunshine. I will copy this and take it in when I go. She has just always said valve so I don't know if she means muscle or not. I go during the day, but it is just normal amount, not so often like at night.
    Virginia

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  19. #200
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    ((((((Hugs to All)))))) ~

    Virginia ~

    I found this, which explains Detruser-Extruser Dyssenergia :

    http://www.drgarysmultiplesclerosisc...ssynergia.html

    Perhaps your doctor will offer you Urotraxol, like Sunshine is taking.

    I'm so sorry that you're going through this.

    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. Our Angel Jon received his wings April 2019. Now, they watch over Jim and me.

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