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  • #16
    I'm like a few others here...just found the canadian IC site by fluke...didn't even know there was one...just like someone else, I thought I was going to a canadian site...nice to see you ladies



    ________________________________
    ________________________________
    Conditions:
    Anxiety attacks since 1980
    IBS since 1989
    Fibromyalgia since 2001
    Ocular Rosacea since 2007
    IC July 2008
    Plantar Fasciitis

    Meds:
    Tramacet
    Elmiron 100mg X3
    Heparin Instills (once every 3 weeks)

    Blessed indeed is the woman who hears many gentle voices call her Mother!

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    • #17
      Canadian site

      Hi Angie,

      Welcome to the Canadian site.

      Sorry I took so long to reply.

      This is just a quick note and I will send you a message tomorrow.

      Had rather a lot to deal with after surgery and follow up.

      Barb 1

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      • #18
        Canadian

        Hi There

        I am a Canadian IC'er (not sure if that's a word but you get what I mean). Anyway, I am from Oshawa, Ontario and I wondered if there are any support groups out this way?

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        • #19
          Ic

          I am Canadian IC patient as well. I am in British Columbia. It would be nice to know how many of us are in each province.
          Interstitial Cystitis: Elmiron and Hydroxyzine
          Depression/Anxiety: Remeron, Cipralex and Clonazepam

          *tried instills for nearly a year, had a break then started again for about 4 months...discontinued due to no improvement and increased flares
          * 2 hydrodistentions :

          * currently on "Nabilone" for pain management

          Taken the following:
          Gabapentin no relief but could tolerate it
          Lyricano relief but could tolerate it
          Cymbalta severe depression/anxiety etc.
          Topamax severe nausea and weight loss
          Oxycodone: I could tolerate if I used it for flares only...not for extended use due to constipation

          What helps IC: yoga/meditation are my current treatments along with chiropractic and pelvic physiotherapy and acupuncture

          Other conditions...
          Vulvadynia (amytriptaline cream - no longer using to to irritation)
          Severe IBS
          Chronic Sinus pain (nasal rinse as need)
          Migraines
          Lower back and sacroiliac joint disfunction

          Allergies: Erythromycin, scents and detergents

          Comment


          • #20
            Hi fellow Canadians!

            I'm Mary, from Southwestern Ontario. I live in a pretty small town, but I am not too far from London and Windsor. If any of you are from this area please let me know!

            Would anyone know of any IC Doctors in my area? I can't really go much east of Toronto - Toronto is about 3 hours away for me but I"d be willing to go that far for a good doc!

            Thanks all!

            Mary

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            • #21
              I am in nova scotia...
              I also wanted to mention anyone in the Ottawa area, there is an incredible PHYSIO THERAPIST who deals with WOMEN and pelvic floor dysfunction, and IC. SHE IS INCREDIBLE!!
              IF you go to her, I swear you will get relief!! if interested let me know, and I will give you her info.

              bluetou
              ICN Member
              Last edited by bluetou; 11-13-2008, 09:33 AM.

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              • #22
                I'm in Nova Scotia too! Not diagnosed yet, but it seems like I have a mild version of IC. It's been mentioned a few times over the past 3 years, so it really doesn't surprise me.

                Rx: Elmiron 100mg 3x daily
                Symptoms: frequency & bladder fullness
                Also have: IBS since 1999, kidney stones since 2000 & UTI's since 2001

                Comment


                • #23
                  Originally posted by MaryMcE View Post
                  Hi fellow Canadians!

                  I'm Mary, from Southwestern Ontario. I live in a pretty small town, but I am not too far from London and Windsor. If any of you are from this area please let me know!

                  Would anyone know of any IC Doctors in my area? I can't really go much east of Toronto - Toronto is about 3 hours away for me but I"d be willing to go that far for a good doc!

                  Thanks all!

                  Mary
                  I am in London. I'm here for you if you want to chat.
                  Kat

                  Meds I'm On:
                  30 mgs Amitriptyline
                  5 mgs Ditropan XL

                  Comment


                  • #24
                    Hi Feelsalone.

                    You are NOT alone! I am really close by (Chatham).

                    I read your post about your co-worker observing your trouble. I am so sorry you are going thru this. Are you happy with your uro? I have seen one here, and he seemed pretty good, but I thought I would go to London if I need another opinion. I'm still really new at all of this.

                    PM me anytime if you want to chat.

                    mary

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                    • #25
                      Canadian Support

                      I have been receiving newsletters from this site for years but only just signed on to the forums tonight (the computer I had before wasn't powerful enough for me to sign on before).

                      I found a support group here in my city and they were very helpful with reading material. Unfortunately, I have never been able to attend one of their meetings because they tell me about them the day before. This doesn't give me enough time to arrange transportation. I also found it difficult to connect with the group even on-line.

                      I'm hoping to have better luck here.

                      I think that this is an awful, terrible disease and that we all need to support each other. Maybe I wouldn't have been having such a hard time if I had people to talk to who understood.

                      Let's all support each other and maybe we can kick this thing where it will do the most good!!!!!
                      Kat

                      Meds I'm On:
                      30 mgs Amitriptyline
                      5 mgs Ditropan XL

                      Comment


                      • #26
                        I haven't been on much lately, I have been busy with back to school stuff, and then I went away right away, I should be home next week, I ussally get on line once a day, so I am around to chat with too. I live in BC.
                        My are with you all. May you all find a way to peace and joy in your lives.

                        Comment


                        • #27
                          Toronto

                          Hi!

                          I am newly diagnosed in Toronto. Anyone know if we have a support group?

                          Best,
                          Emily
                          Suspected IC since May 2009
                          Soft Diagnosis August 2009
                          Current Treatment:
                          IC Diet
                          Elmiron 3 x 100 mg per day
                          Elavil 1 x 25 mg per day

                          Comment


                          • #28
                            Chat

                            when is our next chat in California
                            Blessings,
                            Ruth

                            Comment


                            • #29
                              Back Again

                              Here I am, back again. I haven't been on here since November. Needed time to sort some things out.

                              I am back to work and have lasted much longer than I would have suspected. Other than to go to work, I am not really getting out. This lovely thing called IC has turned me into an agoraphobic! Has anyone else gone through this?

                              I currently spend alot of time trying to get out in public & feel comfortable out in public. It is NOT easy! On the occasions when I do manage to get out, I spend most of my time in the bathrooms. Going back and forth from one to another.

                              I sometimes wonder how I got here?! When all this started and for a few years after, I could go out, I just needed to be able to have access to a bathroom. Then, one day, when I had a dr's appt, I cracked! As soon as I got in the car, I knew I couldn't get to the appt. I called and cancelled my appt.

                              I rebooked for a couple of weeks later and ran into the same problem. This time though, I was so afraid to try and get to my dr's office, that I broke down and cried. I called my dr's office and talked to her receptionist. Luckily, I knew her and she was very kind. I explained the problem and she said that the dr couldn't help me unless I could get there to see her. All I could do was promise to try.

                              I got back in the car and told the person that was taking me to the dr's to just drive and don't stop, no matter what. I laid down in the backseat and hid my eyes, so that I couldn't see how far away I was from a bathroom. Somehow, by some miracle, I got there. My dr put me on anxiety meds, one to take daily and another to take whenever I had to go anywhere - to keep me calm. Just getting there made me feel so much better. And the meds seemed to help. (She said that she was surprised that it hadn't affected me sooner.)

                              Now, however, I can get back and forth to the dr without too much difficulty and back and forth to work (it is very close to where I live), but I'm still afraid to go out.

                              I'm really struggling with this. My meds have the IC under some control. Now my biggest problem, is the fear. I'm no longer on the anxiety meds - I'm not petrified like I was, but I'm still struggling with trying to get my life back.

                              It is so hard without having any real support. I am single and on my own. I do have one sister that has been a lifesafter and I will forever be grateful to her for just letting me talk and encouraging me when she thinks I need it.

                              I only wish now that I had someone who could understand what I'm going through. Someone that I could confide in - who would understand.

                              Wow! I can't believe I have just written all this. I haven't really talked about it.

                              I hope everyone out there with these problems know that I'm here to chat (or just listen) and that I pray for us all.
                              Kat

                              Meds I'm On:
                              30 mgs Amitriptyline
                              5 mgs Ditropan XL

                              Comment


                              • #30
                                Canadian chat

                                Hi Kat
                                Fantastic that you have gotten out and gone back to work. You should be really be proud of yourself. I am wondering why you have gone off your anxiety meds. Did I understand that properly? You must be really stressed by re entering the world and it seems to me this would be an essential time to take them. I hate medications but do think that some have their place. If you are going to gradually get back to some kind of "normal" (whatever that may be for you) then relieving some anxiety will help.
                                I understand, I think, what you mean about the agoraphobia. When I went back to my job after having been a "shut in" for 3 months I had a huge panic attack and was totally paranoid for an entire day. I became rooted on the spot and was sure that everyone was talking about me. It is one of the worst experiences I have ever had.
                                As well it is difficult making conversation when your entire focus has been on you and your illness (understandably) How are you sleeping? If you are not getting much sleep then, as you know, you get run down and end up stressed for little reason as well. The amatriptilyn will help with that as well.
                                I hope that you continue to share your story with the rest of us.
                                I do check this board every couple of days.
                                I am back to being a "shut in" and have not been diagnosed.After my return to work (at that time I had had pneumonia and shingles) I became increasing ill again from an undiagnosed illness. I had to put off my cysto./hyper. because I had a bad bladder infection. It is rescheduled for Oct.1st. Meanwhile I and my dogs are being cared for by a wonderful group of friends as I can no longer do many of the daily things for us. I know that there is probably something else medically going on as well but will get a diagnosis on this one way or the other first.
                                Remember, you should be super proud of yourself!

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