Announcement

Collapse
No announcement yet.

Anyone suffering in Oregon?

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • #16
    Re: Anyone suffering in Oregon?

    Originally posted by ClaireNN View Post
    Hi, Laura,

    Yeah, the Portland support group ended a few years ago when the leader left. Some people I met there and I tried to keep one up but it fizzled out. Now the person I've stayed closest to is moving, but I know one other who wants to start meeting again. I would happily get together with you to talk and see if we can get something going again. I'm 30 now (I see I began this thread when I was 24). I'm doing so much better now. I'd love to help you navigate your treatment since I have a lot of local experience. Also just happy to let you know you're not alone. Message me if you want to meet up!
    Hi Claire, I live on the east coast but I'm 24 and newly diagnosed. Would be interested to hear how you've gotten to a better place over the past 6 years.

    Comment


    • #17
      Re: Anyone suffering in Oregon?

      Hi Rachel,
      Only have about a month of experimentation, but I'm feeling a quite a bit better now (still have my bad days, but they are much less frequent). Glucosamine HCl capsules (avoid additives like boron, hyaluronic acid, etc.) and Benefiber (or an off-brand) have been my best friends in this. I can tolerate more acidic foods using these daily and it's a pretty simple first step. I've read Glucosamine can interact with some meds, though, so talk to your doc. The most upsetting thing for me as a 20-something has been having to give up alcohol. I'm still working on acceptance with that. I hope you get some relief soon!
      Tentatively diagnosed - awaiting cytoscopy

      Currently taking:
      Vegetable glucosamine HCl 1500mg w/ MSM 1000mg (Bluebonnet Vegetarian Glucosamine) *I swear by this!
      Fiber powder (off-brand Benefiber) 2x per day
      Prelief with most meals


      Unsuccessfully tried:
      Vesicare

      Comment


      • #18
        Re: Anyone suffering in Oregon?

        Hi Laura. Thanks for your reply. I'd love to chat more if you're up for it. I know we don't live anywhere near each other but I dont know anyone else with this condition, can't find a support group near me and it would be nice to talk to someone close in age who's dealing with it too.

        Comment


        • #19
          Re: Anyone suffering in Oregon?

          I can definitely relate to that. It's a very isolating diagnosis. Feel free to private message me with your contact info (whatever form you prefer) and we can be in touch.
          Tentatively diagnosed - awaiting cytoscopy

          Currently taking:
          Vegetable glucosamine HCl 1500mg w/ MSM 1000mg (Bluebonnet Vegetarian Glucosamine) *I swear by this!
          Fiber powder (off-brand Benefiber) 2x per day
          Prelief with most meals


          Unsuccessfully tried:
          Vesicare

          Comment


          • #20
            Re: Anyone suffering in Oregon?

            Hi Laura. I think I sent you a message (I hit send, but there's nothing in my sent folder). If you didn't get it, let me know.

            Comment

            Working...
            X