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Jilly replied to the topic Do you think MS is a rare disease? in the forum Living With MS 1 month ago
Hiya Ed.
I am sure there are more people with MS than we think. So, not so rare.
MS has so many different symptoms, it’s hard to even diagnose.
<span class=”ILfuVd NA6bn” lang=”en”><span class=”hgKElc”>World Multiple Sclerosis Day – <b>May 30, 2023</b>.</span></span>
Jilly PPMS
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Jilly replied to the topic Does it matter what you call your MS? in the forum Living With MS 1 month, 2 weeks ago
Rock it, good one Carmen. Nice to see you on the boards.
Jilly PPMS
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Jilly replied to the topic Does it matter what you call your MS? in the forum Living With MS 2 months, 1 week ago
good one Ed. We may as well rock it where we can.
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Jilly replied to the topic Does it matter what you call your MS? in the forum Living With MS 2 months, 1 week ago
Not really. As a joke sometimes I type PPMS after my name. Both my sisters have letter after their names. I can see people scratching their heads lol.
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Jilly replied to the topic Should Amazon be in the healthcare field? in the forum Living With MS 2 months, 1 week ago
Yes, I live in a democracy Ed. And no, my new year wasn’t very good. My sister, who thinks she knows what I should be doing ruined that day. She just can’t accept me being ok and making soft toys for the poor kids in my hood. I told her to lower her expectations of me as I will never reach them. Then told her to leave and to stay home. I am so…[Read more]
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Jilly replied to the topic Should Amazon be in the healthcare field? in the forum Living With MS 2 months, 2 weeks ago
<span class=”yKMVIe” role=”heading” aria-level=”1″>Jeff Bezos</span> is who I am talking about.
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Jilly replied to the topic Some ideas to make your home MS-friendly in the forum Living With MS 2 months, 2 weeks ago
Doors are my biggest hate. I would love to have no doors at home.
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Jilly replied to the topic Should Amazon be in the healthcare field? in the forum Living With MS 2 months, 2 weeks ago
No way. Amazon dumps truckloads of products all the time, that should have gone to schools or other poor areas. He is a rich man with no brain. He is a polluter.
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Jilly replied to the topic Let’s Share Some Good News in the forum Living With MS 4 months, 4 weeks ago
Hiya Ed. I am delighted to finally have a project. It’s taken falling out of bed 3 times in 6 months, to buying a body pillow to have the light bulb moment to make toys with felt and pillow filler.
Oh and thanks mum (rip 1985). I still have your sewing kit.
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Jilly replied to the topic Let’s Share Some Good News in the forum Living With MS 5 months, 1 week ago
I am making the stuffed little toys for those less fortunate. Thought when I get enough finished I will give them to Women’s Refuge or give them to the neighborhood chemist to give them to the little kids that look like they could used a soft stuffed toy. That’s my plan, I have plenty of felt but need more stuffing, so that’s on order. And I have…[Read more]
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Jilly replied to the topic Let’s Share Some Good News in the forum Living With MS 5 months, 2 weeks ago
I turned 60 a couple of months ago and I have started making felt soft toys. I haven’t hand sewn for 35 years, except for replacing missing buttons. It’s been fun, but my stitches need some work so I am just making small toys at this stage.
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Jilly replied to the topic Do You Cry and Don't Know Why? in the forum Living With MS 6 months ago
Hiya Ed.
When I cry I know why.
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Jilly replied to the topic Anxiety with MRI scans in the forum Living With MS 6 months, 4 weeks ago
And I pretended I was on a beach soaking up the sun and hearing a jack hammer in the background.
Hope some of these tips are helpful.
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Jilly replied to the topic Falling Out Of Bed. Is this an MS thing? in the forum Living With MS 7 months ago
I have been given a bed rail, I feel much safer now, I bought a body pillow but got the rail first. So I am using the body pillow as my pillow, it’s really wide, I love it.
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Jilly posted a new activity comment 7 months ago
The Orville was only on for 4 episodes here. What was the point in that? Yawn.
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Jilly replied to the topic Let’s Share Some Good News in the forum Living With MS 7 months ago
Puts hand up, I do, I do.
My sister and I got on a plane in Christchurch and flew down to Dunedin to see my other sister’s new home and have lunch with her. I was wheeled everywhere as my walker was put in as luggage. We had such a great day all getting together and before we knew it, it was time to head back to the airport to go home. The whole…[Read more]
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Jilly replied to the topic Anxiety with MRI scans in the forum Living With MS 7 months ago
Hi Patrick. When I had a 50 minute MRI, I was anxious too. I found the thing they put over your face the oddest part. What I did was shut my eyes and controlled my breathing. I got through doing that, I never opened my eyes, as it was disorientating.
Tip, ask them to talk to you with updates of how much time has gone by. They didn’t talk to me…[Read more]
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Jilly replied to the topic Which MS Symptom Annoys You the Most? in the forum Living With MS 7 months, 2 weeks ago
Not being able to walk or run like I used to. That would be top of my list.
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Jilly replied to the topic Falling Out Of Bed. Is this an MS thing? in the forum Living With MS 8 months, 2 weeks ago
lol Ed, I bet you have some stories too.
I saw my doctor about all this falling out of bed stuff and I have been fast tracked to get a fitted bed rail. So that’s good.
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Jilly replied to the topic Falling Out Of Bed. Is this an MS thing? in the forum Living With MS 8 months, 2 weeks ago
Hi Ed and John.
I have tried a body shaped bean bag next to my bed but it’s hard to get to my bed with that., and a bit slippery. Had a new idea and placed two pillows under the fitted sheet, felt like spooning, that’s been awhile lol. My forehead and left arm still hurts.
I would like a rail of some kind that can be raised up and down. I have…[Read more]
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