No announcement yet.

What are the best ways your support system helps you?

  • Filter
  • Time
  • Show
Clear All
new posts

  • What are the best ways your support system helps you?

    Hi all,

    Recently there was an article geared towards RA patients and their loved ones called 12 Nice Things You Can Do For Someone In Pain.,00.html

    I sent the article to Jill and with the suggestion that we make our own list for the IC community and she agreed to the idea. I'd love some input from everyone! What things do you appreciate when you are in pain?

    Thank you!

    Mommy to 2 crazy, wonderful kids and wife to the most amazing man in the world!

  • #2
    A hug is very nice.

    When I don't feel good --- having someone cook dinner & load the dishwasher.
    Stay safe

    Elmiron Eye Disease Information Center -
    Elmiron Eye Disease Fact Sheet (Downloadable) -

    Have you checked the ICN Shop?
    Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

    Patient Help:


    Diet list:

    AUA Guidelines:

    I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

    Anyone who says something is foolproof hasn't met a determined fool


    • #3
      support system

      I think for me understanding is the most important thing. Anyone who tries, to understand how I'm feeling can make my day easier.

      I agree with Donna that having someone make dinner is comforting. Having anyone do anything to help, without complaints, or having to be asked, is nice. It's the little acts of kindness that make not feeling well feel not so bad.

      A phone call from one of my children is wonderful. We don't have to talk about my IC, and as a matter of fact, I usually would just as soon not. It's the funny stories about grand kids, cats ,hubbies, etc. that can make the pain fade into the background for a while. Calls from friends, just to chat, are great too.

      Great thread, thanks for starting it.


      • #4
        Thank you both for your input, ladies. I really appreciate it! Hugs to you both!
        Mommy to 2 crazy, wonderful kids and wife to the most amazing man in the world!


        • #5
          Just basic human compassion. Seems though thats a thing of the past.
          (o.O )
          (> < ) This is Bunny. He's on his way to world domination.


          • #6
            I love my husbands backrubs when I'm washing the dishes. It really helps to relieve all that tension that builds up while your hurting.


            • #7
              Someone who understands me! Thankfully my whole family does in one way or another. With me right now, its been my back pain and after a full day at work (plus the hour car drive home) I just want to go to bed; which I usually do-get on my pjs and turn on the TV and just veg out. My kids are old enough to help out by cooking or cleaning so I am grateful for that.


              • #8
                I have a friend that when I'm in a really bad flare or after having a cystoscopy/hydrodistension/fulguration done phones me every day to see how I am doing and to chat. She lives 8000 kilometers from me - but still she phones to chat and just to be there when I need to vent or want to discuss new treatment options.

                I also have a friend who is very considerate and knows there are only certain things that I can eat - so she buys those things and make sure she has things for me to eat on hand - for when I visit.

                Both of these friends are more like my sisters than my friends. I am so thankful for them both! I am so thankful that God has provided me with such a wonderful support system - which comes from my two university friends!


                Current Meds:
                1 Elmiron 100mg 3x a day
                1 Cimetidine 300mg 2x a day
                4 Gabapentin 300mg 3x a day (3600mg)
                1 - 2 Atarax 25mg at bedtime
                1 baclofen 10mg 3x a day as needed
                200mg of Pyridium 3x a day (usually do in cycles - on for a week or two as needed) - I am very careful about this.
                2 belladonna and opium suppositories as needed for pain daily.
                Bladder instillations (Lidocaine, Heparin, & Sodium Bicarbonate)

                I have tried but failed -
                lidocaine instillations, heparin instillations, oxybutynin by mouth also called ditropan, tylenol 3s with coedine, cyclobenzaphrine, Ativan, vesicare, Oxytrol patches worked for 3 to 4 years and then failed, I tried Uracyst and had some success but my urologist felt that it was not successful so we moved on to trying something else. .