Forum Replies Created

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  • jilly

    Member
    January 3, 2024 at 4:45 pm in reply to: Where is everybody????

    Hiya Ed, I’m here off and on. How are you doing?

    I have noticed I can’t reply to some posts, which is weird. IE. are you ready for the unexpected?

    And what happened to the edit your post choice, I often post before I proof read it then see a mistake, silly Jilly.

    Jilly PPMS CC

  • jilly

    Member
    November 28, 2023 at 4:18 pm in reply to: Pharmac funding treatment for PPMS in New Zealand

    My GP says I don’t qualify.

    • jilly

      Member
      December 16, 2023 at 8:18 pm in reply to: Pharmac funding treatment for PPMS in New Zealand

      I have been diagnosed with cervical cancer, it’s a 5mm mass. This week I have an MRI and a PET scan and a meeting.

      It’s my fault, a few years after the earthquakes I ran out of gas and stopped caring for myself. I could see no future, got PPMS now cancer. Thanks Mum.

      There is one thing I am very happy about is my non existent children that I never had, will be spared from any illness. It all stops with me. Yay! Mission accomplished.

      Jilly PPMS

  • jilly

    Member
    April 2, 2023 at 2:42 am in reply to: Do you think MS is a rare disease?

    That’s a lot for my understanding. But I feel like I am the only one who has it.

  • jilly

    Member
    February 26, 2023 at 8:37 pm in reply to: Do you think MS is a rare disease?

    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

  • jilly

    Member
    February 9, 2023 at 3:05 pm in reply to: Does it matter what you call your MS?

    Rock it, good one Carmen. Nice to see you on the boards.

    Jilly PPMS

  • jilly

    Member
    January 20, 2023 at 2:28 pm in reply to: Does it matter what you call your MS?

    good one Ed. We may as well rock it where we can.

    Jilly PPMS

  • jilly

    Member
    January 14, 2023 at 4:30 pm in reply to: Does it matter what you call your MS?

    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.

  • jilly

    Member
    January 14, 2023 at 4:23 pm in reply to: Should Amazon be in the healthcare field?

    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 over her. I am 60 years old for Christ sake, just let me be me.

  • jilly

    Member
    January 11, 2023 at 10:06 pm in reply to: Should Amazon be in the healthcare field?

    Jeff Bezos is who I am talking about.

  • jilly

    Member
    January 11, 2023 at 7:14 pm in reply to: Some ideas to make your home MS-friendly

    Doors are my biggest hate. I would love to have no doors at home. Steps are a pain too.

  • jilly

    Member
    January 11, 2023 at 7:13 pm in reply to: Should Amazon be in the healthcare field?

    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.

  • jilly

    Member
    October 31, 2022 at 7:25 pm in reply to: Let’s Share Some Good News

    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.

  • jilly

    Member
    October 19, 2022 at 6:23 pm in reply to: Let’s Share Some Good News

    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 found online great patterns to use.

  • jilly

    Member
    October 14, 2022 at 12:34 am in reply to: Let’s Share Some Good News

    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.

  • jilly

    Member
    September 23, 2022 at 9:26 pm in reply to: Do You Cry and Don’t Know Why?

    Hiya Ed.

    When I cry I know why.

  • jilly

    Member
    September 1, 2022 at 1:46 am in reply to: Anxiety with MRI scans

    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.

  • jilly

    Member
    August 30, 2022 at 8:33 pm in reply to: Falling Out Of Bed. Is this an MS thing?

    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.

  • jilly

    Member
    August 30, 2022 at 8:17 pm in reply to: Let’s Share Some Good News

    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 day was a hoot and we hope to repeat it every year. My sister made one mistake, she wheeled me into a lift and left me facing the back of the lift. It felt weird but I didn’t know at the time what to say. Next time I will ask her to wheel me in backwards. Who faces the back of a lift? Just an oversight on my sister’s part. It was the first time I have been on a plane with MS, whole new experience, get on the plane first and get off last, way cool.

    People asked me ‘why didn’t you stay overnight?’ I like to get home, I am not an overnighter.

    I turned 60 years old this week, omg how did I get there so fast! Don’t feel a day over 35…

  • jilly

    Member
    January 3, 2024 at 4:38 pm in reply to: Do you talk about your bowels?

    I talk about my bowel to people close to me, which is just a small number. Can I talk here about it? Yeah why not lol.

    Sometimes I don’t go for 4 days, then all hell breaks out. And then repeats. MS affects my bladder as well, but I have pills for that, Oxybutynin which helps with the sense of urgency. They really help as a cannot move fast.

    It just gets better and better doesn’t it.

    Jilly PPMS CC

  • jilly

    Member
    January 3, 2024 at 4:02 pm in reply to: Pharmac funding treatment for PPMS in New Zealand

    Hi Mike, sorry to hear you got shingles, that awful to get I hear. My mother got shingles after breast cancer back in the 1980’s, it just gets better and better doesn’t it.

    Jilly PPMS CC

  • jilly

    Member
    January 3, 2024 at 3:58 pm in reply to: Pharmac funding treatment for PPMS in New Zealand

    I meant to say older women may have cervical cancer. Go to doctor fast.

  • jilly

    Member
    January 3, 2024 at 3:38 pm in reply to: Pharmac funding treatment for PPMS in New Zealand

    Hi Benjamin. Sorry for the delay. I have been in and out of hospital with all sorts of scans. I have stage 2 cancer which is fixable. But it comes with risks. My PPMS may get worse. I am really scared about that. I don’t want my MS to get worse, it’s hard enough now. I suppose it’s my destiny, like all the other bullshit in my past. I really am in the ‘now moment’ facing the deep end very soon. I try my best not to dwell on it and for the most part I do ok. My first treatment is 22 January, then it’s everyday (Mon-Fri) for 6 weeks. that’s all I know right now.

    Tip for older women. If you start bleeding from your vagina you have cancer ok and get to your doctor fast.

    Jilly PPMS CC

  • jilly

    Member
    December 17, 2023 at 7:28 pm in reply to: Pharmac funding treatment for PPMS in New Zealand

    Hi Benjamin. I was surprised mostly, didn’t see that coming. My roommate was diagnosed with blood cancer 4 months ago as well. We are a right pair. I am in two minds whether to accept treatment or not. I have been waiting for something that will kill me. I am not fussed on this planet anymore, rather tired of all the awful things going on.

    Jilly PPMSC

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