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  • #31
    Thank you.

    Thank you so much for your kind words. Sometimes, I find it very hard to accept that I have done some things and accomplished some things on the road to getting back to 'normal'. You sound alot like my sister, who has been a complete Godsend to me. She is always telling me how much I have accomplished and how proud she is of me.

    You did understand correctly. I did stop taking my anxiety meds. I started taking them because I got to the point that I was absolutely petrified to go outside. I am no longer petrified but still stressed about it. I decided to get off the meds because I could go out without them and I didn't want to rely on them. I am already taking way too many pills.

    I do find all of this hard and mentally exhausting. I have missed out on so many things in life - things that I can never participate in now that they're done. That has been one of the hardest things for me to accept - and I still don't. Sometimes, because of the IC and it causing the agoraphobia, I feel as though I am being punished for something beyond my control. Due to all the medical problems & going on debt, I've had to go on disability (for over 2yrs!) and this caused financial problems as well. I used to have an excellent credit rating and could get anything, now, my credit is in the toilet and I can get nothing from any company.

    I sometimes (stupidly) ask, 'why me?' And then I have to kick myself and say, 'why not me?' I deserve all of this no more and no less than anyone else with this.

    Anyway, enough about me.

    It sounds like you have had much support. You are very lucky! I haven't had alot. I am part of a large family. But I am single and on my own. The only one that has really been there for me since the beginning is my one sister. Make sure that you let everyone know how much you have appreciated all their help and support. I tell my sister as often as I can.

    If you ever need someone to talk to or just want to scream, send me a private message.

    Take care of yourself (I wish you well!) and hope to hear from you again!
    ***********************************************
    Originally posted by Uzes View Post
    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!
    Kat

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

    Comment


    • #32
      Thanks

      Thank you for your kind words.

      I appreciate that you think I should feel pride for my accomplishments, but I think pride went out the window when this nasty disease invaded my life.

      Sometimes, if I think back to where I was last year at this time, I think I have come a long way. But then, I remember all the things I still can't do (& wonder if I ever will be able to again). There are so many simple things that are just out of my reach right now. Simple things, like going to a work christmas party or going out to lunch with co-workers (going to a movie or play or concert). Just thinking about attempting these things gets my heart pounding so hard, that I have to do something to take my mind off of them before it bursts out of my chest!

      I have done some things since I last signed on - but I still have so far to go. It's hard to believe that there was a time when I didn't have to think about whether I could go out or not - if I had something to do or somewhere to go, I just went. I find it very hard/impossible to believe that I will ever be that carefree again. I try to tell myself that I am dealing with all this medical stuff now, but that I will be the healthiest/happiest senior in the world (when I get to that age)! Haven't quite convinced myself of this yet. I keep trying though but IC/agoraphobia seems to keep getting in the way.

      No one told me life was going to be this hard. Sometimes I think that when we are born, we should have a warning label 'your life will drastically change in your thirties' so that you know to go out and have fun and make the most of things, before all the chances are gone.

      I guess I am finding this so hard, because I am all on my own. No one to be with when I'm at home. No one to give me a hug at the end of the day and say 'don't worry, it will be ok. We'll get through this together'.

      My only true friends now, are on-line. Most of (what I thought were) my real friends, have disappeared.

      I hope that everyone who reads this, who has someone there for them, counts their blessings daily! You can't imagine what this is like all alone (& I hope you never can)!

      I will pray for all of us, because I think that we all need more strength than we have on our own.

      Take care.

      I hope that things have improved since your post and that things continue to get better for you!

      *************************
      Originally posted by Uzes View Post
      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!
      Kat

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

      Comment


      • #33
        New here - from Calgary

        Hi fellow Canadians,
        I'm new here. Just joined yesterday. I haven't "officially" been diagnosed with IC yet, but I'm pretty sure that's what I have. I had a bladder infection about two months ago which wasn't diagnosed for a while - I think the doctor was sitting on the results for a while. So it was about 10 days after my initial urine sample that I was told that I had an infection, and who knows how long I had had it before. I was put on Ciprofloxacillin for 6 days. It seemed to help, but about a week after I finished the antibiotic I felt like the symptoms were back again. I went back to the doctor and the dipstick was negative. I was very surprised as I had all the symptoms off a UTI. So went home and drank lots of organic cranberry juice (which is probably one of the worst things you can do for IC after reading some things on this site). So back to the doctor I went again the other day. Again a negative dipstick. I have also had a lot of discomfort in my abdomen, bloating, peeing every 15 minutes or so some days, and very sore "down below" in the vaginal opening. So I have to go for an ultrasound next week and then may be sent to a urologist. The doctor suspects IC. He said one of the treatments is very high dose antibiotics for 3 months, which makes no sense to me if it's not due to a bacterial infection.
        Would love to know if anyone lives in the Calgary area, and even if you don't what has helped you. I am quite scared about living like this for the rest of my life. Getting quite depressed. I also have irritable bowel and Hashimoto's. I went through surgical menopause 4 years ago at age 49 when I had prophylactic surgery when I discovered I carry the BRCA2 gene mutation (also had a double mastectomy). I've been using bioidentical hormone creams for two years and Vagifem suppositories (when I remember) - think I must use them regularly.
        Does anyone know a good urologist in Calgary?
        Thanks,

        Jacky

        Comment


        • #34
          New here=From Hamilton Ontario

          Just wanted to say to all you Canucks!

          Daughter your faith has made you well,go in peace, and be healed of your disease.(Mark 5:34)

          Tried:
          Detrol:only took one pill and it made me sick
          Elmiron:caused horrible pain(took 1 week)
          CystaQ:caused alot of burning and pain(only took one pill)
          Wellbutrin:only on it for three days as it caused alot of bladder pain
          Elavil:Took one pill and it caused a flare that lasted almost two weeks. It was the longest flare I've ever had. Never again..ouch
          Prelief:made my bladder burn and feel tingly.

          Take:
          Uracyst:Started May 19 2011
          Enablex:take one pill daily with no issues
          Naproxen:for pain as needed
          Baking Soda with water:as needed and it's a God send. It brings down my pain within 20 mins.
          Venofer: Started April 2012 by IV for low Iron. I do not tolerate oral Iron so this is the route I had to take.Does not bother my bladder but did have other side effects. I take Benedryl with each treatment to avoid side effects.
          Supplements:Whey Protein powder daily
          Dessert Harvest Aloe It has been helping alot but I can only take it every two days as my "die off" reaction has been severe.

          Comment


          • #35
            Hi from NS... My son is in Hamilton Ont.
            I just got over a bladder infection.. probably had it longer then I thought but I kept thinking it was the IC

            I recently got Prelief from a place in Windsor Ont. ordered on line
            They mailed it to me .. I got 3 bottles of 300 capsules and did not have to pay for the shipping. Very quick in getting it here..
            I have used it before and got good results but have not been to the States in the last few years.

            I have IBS and am on meds for high blood pressure and cholesterol.
            I do take Detrol LA occasionally but they constipate me.
            Been on and Anti depressant for 20 some years . small dose
            I had a hysterectomy but kept ovaries- I now have menopausal things like hot flashes, not sleeping well etc. aches and pains lol

            Hope you can find something that helps you. It sure is not easy getting things sorted out

            Have a great day.
            God brought me to it, He will bring me through it!!!

            Diagnosed 2003
            by cysto/hydro
            Elmiron took almost a year- made me sick, caused diarrhea
            Pyridium -Made me sick
            Detrol and Ditropan, Toviaz and Mrrbetriq- caused constipation and head ache.
            Tried DMSO instill- had 5 out of 6
            Started Oxytrol Patch-stopped using them after 3 months-- skin was getting irritated
            Cysto/hydro April 6th 2011-- on expansion only hold one cup
            IBS/ IC
            High blood pressure meds and Crestor
            Metformin (prediabetic)
            Sinequan (depression)

            Comment


            • #36
              HI Jacky WELCOME!! Try not to get too depressed and stressed, (so easy to say....)....but stress is a huge trigger for IC and can actually cause you more pain an discomfort.

              If I were you, I would start ASAP on the IC diet, this will help ease the bladder of any irratable foods you may be consuming now, and all for healing in the bladder through your diet. Some do well with this and do not needs to do anything else.

              personally I did the IC diet, I also went to the doctor (who wanted to do a bladder distention and give me elmirion)...I did neither. I went to a naturalpath and went this route, and I am doing quite well to date. I took all the supplements the naturalpath wanted for about six months, and then eased off them, and I take nothing for IC now and just eat the ic DIET.

              I also did pelvic floor therapy, acupuncture, massage therapy, and I do yoga daily. Yoga and massage therapy are part of my routine to keep stress and anxiety away.

              Hope this helps!!
              Peace
              Blue



              Originally posted by jackydp View Post
              Hi fellow Canadians,
              I'm new here. Just joined yesterday. I haven't "officially" been diagnosed with IC yet, but I'm pretty sure that's what I have. I had a bladder infection about two months ago which wasn't diagnosed for a while - I think the doctor was sitting on the results for a while. So it was about 10 days after my initial urine sample that I was told that I had an infection, and who knows how long I had had it before. I was put on Ciprofloxacillin for 6 days. It seemed to help, but about a week after I finished the antibiotic I felt like the symptoms were back again. I went back to the doctor and the dipstick was negative. I was very surprised as I had all the symptoms off a UTI. So went home and drank lots of organic cranberry juice (which is probably one of the worst things you can do for IC after reading some things on this site). So back to the doctor I went again the other day. Again a negative dipstick. I have also had a lot of discomfort in my abdomen, bloating, peeing every 15 minutes or so some days, and very sore "down below" in the vaginal opening. So I have to go for an ultrasound next week and then may be sent to a urologist. The doctor suspects IC. He said one of the treatments is very high dose antibiotics for 3 months, which makes no sense to me if it's not due to a bacterial infection.
              Would love to know if anyone lives in the Calgary area, and even if you don't what has helped you. I am quite scared about living like this for the rest of my life. Getting quite depressed. I also have irritable bowel and Hashimoto's. I went through surgical menopause 4 years ago at age 49 when I had prophylactic surgery when I discovered I carry the BRCA2 gene mutation (also had a double mastectomy). I've been using bioidentical hormone creams for two years and Vagifem suppositories (when I remember) - think I must use them regularly.
              Does anyone know a good urologist in Calgary?
              Thanks,

              Jacky

              Comment


              • #37
                jackydp

                Hi and welcome, if you would like to know of IC Dr.'s in Calgary email the ICnetwork or Canadain IC group and ask for a list of Dr. in Canada who treat IC. This list though is Dr.'s who put themselves on the list. I don't have it anymore or I would send it to you. There is one in Edmonton who I have heard is good, but if I recall there is one at the womans hospital in Calgary (?) may not have the right name, but the lady who emails back from that site is very nice and will help you in any way. The people here are very very helpful even if it is just a sympathic ear, or you need to vent to someone.

                I suggest to you to start to follow the diet right away even without a diagnoses, it has helpped my alot, when I thiink of all the years I went with being diagnosed and could have felt better by changing what I ate

                For IC there is no one quick fix pill that we all would like. I have heard of trying long term AB's and when I have tried it I felt better on them but symptoms returned when I quite them, there is some thought to that IC maybe cause by a bacteria, but nothing firm is known, but many people find their symptoms come after a UTI. but also IC bladder can react to way less bacteria in our bladdders than other people, i find a dip does not do it for me I need to have my urine cultured and even when the bacteria count is fairly low but present (not enough to treat a normal person It will cause me problems) AB's also have an anti inflamatory effect.

                Another suggestion is read all you can about this and when you have your next Dr.'s app take a list of ? for him, if he can't answer them you need a different Dr.

                I also found if very helpful to buy the IC survivle guide, it lays out most of the info you need to know in an orderly manner and explains how things inter connect.

                ASlot of people find it is a bumpy road to get diagnosed and an a treatment plan that works for you, but you will feel better in time, and it is amasing how much the diet can do on it's own, but for the first few months you can't cheat or you will not be able to figure out what bothers you or not.

                We are all different I can eat some of the do not eat foods but I can't eat some of the allowed or maybe allowed foods, such as apples and green peppers.

                If you are a coffee addict like alot of us you can buy low acid/decaf coffees, what I have found satifies my craving for coffee and I only do it when my bladder is doing well is a single shot of decaf coffee in a med to large cup of steamed milk, of course this is a lattie, but alot of places put a double shot of coffee in when you order bigger than an a small. If you have a Secound Cup Coffee shop near you, I buy their white hot chocolet, they even sell it in powder form to take home to make.

                Well I should go, read the boards ask ? and many, many people will help you, nothing is too graphic to ask, so don't be embarassed. Knowlegde is a powerful thing. Don't let someone tell you not to listen to people here, almost everything you will expirence someone else will have too. Some people say it is only the really sick people who write in here but that is just not true. I am quite frank with my Dr. that I get alot of my info from here, he says that is fine but take it all with a pich of salt which is true for everything you read on the net, but at this site people are truely tring to help you.

                Good luck MG
                My are with you all. May you all find a way to peace and joy in your lives.

                Comment


                • #38
                  Thanks

                  Hi,
                  Thanks to all the replies and the great suggestions. I have started the IC diet and have noticed a difference almost immediately - unless it's just coinidence! My symptoms have practically gone since Saturday. It feels wonderful. But I am always on edge waiting for it to come back. I've cut out all chocolate (sob, sob), caffeine, juices except for pear juice, sodas (didn't drink much anyway), and I didn't drink much in the way of alcohol anyway. The first few days were a bit tough as I made such bland food (vegetables in a crock pot with no seasoning, lentils). Since then I realize it's not that bad and you can still eat meat. Just have to watch the ingredients of packaged or canned things. I've been drinking water (filtered) or pure chamomile or mint tea. Eating almonds and cashews for snacks, vanilla yoghurt instead of my usual fruit one. Cut out my vitamins too except for Vit D, and I still need to take my Calcium due to osteopenia (it always upsets my stomach though - IB).

                  My abdominal ultrasound came back absolutely normal which was a relief, however it would be normal with IC. I did find the name of a doctor who has been recommended by someone I know who works for the Alberta Medical Association, so have passed his name on to my family doctor.

                  I've sent off for the IC survival kit and am waiting for it to arrive.

                  Well, must go and make some supper - hopefully a bit tastier than the first few meals! My husband had a fit when he tried it and refused to eat it, even when he added spices and other things to it!

                  Will be in touch. Hope everyone else is doing OK too.

                  Jacky

                  Comment


                  • #39
                    I am allergic to spices and always have been, when ever possible I make myself the same food but prepare it separately. I know this is more work and more dirty dishes but for the most part I have always had o do this anyways. I won't take long and you will figure out ways to satifiy both of you.

                    My husband is a big spice eater, and the hotter the better, all of my kids take after his tastes so they are all adventuresome when it comes to food, which I am glad, I have had to always watch every thing that goes into my mouth so on top of the IC diet and allergies I am very picky but I have to be. For example I have a friend who goes out of her way to make me things I can eat ast there house when we go there for dinner, she knows to use different utensiles for me but every time we go there for dinner i have and alergic reaction, I didn't want to say anything and make her feel bad when she has tried so hard I finally figured out the other day, that she was doing everything right it was the bit of beceal I was putting on the food after it was made that I was allergic too, perservatives I think I only use butter at home. I figured it out last weekend my husband went to a hotel breakie and brought me breakfast in bed a plain bagel with butter, when I reacted i asked if it was butter he said no they only had beceal. So now I can tell her. I truely appreciate her efforts.

                    But truely following the diet gets better and easier with time. Before going to resturants you can sometimes look up ingredence and menu online, but be very specific when ordering, get the waitress to say bad to you what you have told her.

                    Good luck MG
                    My are with you all. May you all find a way to peace and joy in your lives.

                    Comment


                    • #40
                      Montreal

                      Anyone here from Montreal?

                      Comment


                      • #41
                        Mtl

                        Hi
                        I am from the Eastern Townships-Stanstead--but am in NS now. I lived in MTl many years ago..Not sure is there is anyone else on here from there or not.
                        Take care.
                        God brought me to it, He will bring me through it!!!

                        Diagnosed 2003
                        by cysto/hydro
                        Elmiron took almost a year- made me sick, caused diarrhea
                        Pyridium -Made me sick
                        Detrol and Ditropan, Toviaz and Mrrbetriq- caused constipation and head ache.
                        Tried DMSO instill- had 5 out of 6
                        Started Oxytrol Patch-stopped using them after 3 months-- skin was getting irritated
                        Cysto/hydro April 6th 2011-- on expansion only hold one cup
                        IBS/ IC
                        High blood pressure meds and Crestor
                        Metformin (prediabetic)
                        Sinequan (depression)

                        Comment


                        • #42
                          Health Food - Prelief / D-Mannose

                          Hi everyone.

                          I was able to visit the Health Food Store that lalarainbow mentioned in her post. What a fantastic place! I went to the one in Lakeshore (which is East Windsor) and the girl there, Laura, was so knowledgable about IC. I was totally floored - someone who understood!!!! She said she had enough people come in with bladder issues that she had done some reseach on it. I got some prelief, d-mannose and marshmallow root tea. She also recommended
                          L-arginine and Gotu Kola (neither of which I had heard of) but I didn't want to try too many things at once. I started with the D-mannose today and will gradually try the others.

                          She said that they would ship me the stuff next time for about $5 - I live an hour away from the store, so I can't drive there for $ 5 worth of gas!!!

                          If anyone wants more info:

                          Pure Nature Nutrition Centers
                          www.purenaturenutrition.com

                          5841 Malden Road, Lasalle, ON 519-972-8696

                          or

                          25 Amy Croft Drive (Manning at E.C. Row)
                          Lakeshore, ON 519- 979-7632
                          This is the one I went to. I think they ship from the Lasalle one.

                          Hope this info is helpful.

                          Mary

                          Comment


                          • #43
                            Wow, thanks Mary!

                            Comment


                            • #44
                              I ordered 3 bottles and that way did not have to pay for shipping..
                              and it was very quick in getting it too..
                              God brought me to it, He will bring me through it!!!

                              Diagnosed 2003
                              by cysto/hydro
                              Elmiron took almost a year- made me sick, caused diarrhea
                              Pyridium -Made me sick
                              Detrol and Ditropan, Toviaz and Mrrbetriq- caused constipation and head ache.
                              Tried DMSO instill- had 5 out of 6
                              Started Oxytrol Patch-stopped using them after 3 months-- skin was getting irritated
                              Cysto/hydro April 6th 2011-- on expansion only hold one cup
                              IBS/ IC
                              High blood pressure meds and Crestor
                              Metformin (prediabetic)
                              Sinequan (depression)

                              Comment


                              • #45
                                Sorry

                                Is anyone still reading the Canadian chat.

                                I have had a terrible time dealing with the death of my precious grandson and am finally able to concentrate a little more on the interstim (not that it can be ignored).

                                Hope to hear from some one.

                                Take care

                                Barb 1

                                Comment

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