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  • #61
    Re: Botox Today

    I'm also glad you were approved. You need some resting time to help you feel better.

    Sending gentle hugs,
    Donna
    Stay safe


    Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
    Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

    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: http://www.ic-network.com/patientlinks.html

    Sub-types https://www.ic-network.com/five-pote...markably-well/

    Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

    AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

    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.
    [3MG]

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

    Comment


    • #62
      Re: Botox Today

      Week One of being on short term disability has ended. I am very thankful for this time to rest. I think what I have noticed most since being off is that I am exhausted. From months of just pushing through I am purely exhausted. This week I rested and slept when I could. I also went for a massage and did another round of acupuncture. I haven't really spotted a difference yet. The massage was for relaxation primarily. The acupuncture was to address the bladder.

      I have also spent time trying to figure out my subtype. I wonder if the Hunner's lesions have come back. I know until I had them fulgurated off last time I was in lots of pain. Always worth the investigation.

      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. .
      [/I]

      Comment


      • #63
        Re: Botox Today

        Why only a week off are you that much better that you can go back to work? I assumed you would be off till you got you next Botox treatment.

        I hope going back to work is ok fir you. I am glad you got some rest
        My are with you all. May you all find a way to peace and joy in your lives.

        Comment


        • #64
          Re: Botox Today

          Originally posted by Mothergoose View Post
          Why only a week off are you that much better that you can go back to work? I assumed you would be off till you got you next Botox treatment.

          I hope going back to work is ok fir you. I am glad you got some rest
          Hey Mothergoose,

          No, I am off for the next two months or longer. The first week had just ended ;-) I am resting and that is all I am doing right now. Once I gain some energy I will do some more research in my other weeks off.

          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. .
          [/I]

          Comment


          • #65
            Re: Botox Today

            I am glad for you I misunderstood.

            Give your self the time to fully rest I think sometimes we get used too being tired that we don't realize how tired we are.
            My are with you all. May you all find a way to peace and joy in your lives.

            Comment


            • #66
              Re: Botox Today

              February has arrived and I am elated. This is botox procedure month. I am over the moon. 27 sleeps!!

              This week has been a bit rough. I am always on top of renewing and refilling my prescriptions especially my instillations. Two weeks before I run out I place my order only to discover my prescription had expired. The pharmacy sent the request to my doctor. It took him a whole 9 days to sign the prescription. Needless to say, I ended up waiting for 5 days without an instillation. Ugh! Thankfully today they arrived in the mail and now with it instilled, I can do a happy dance. So relieving.

              Tomorrow is my day for appointments. I start with a massage, onward to a Naturopath appointment, and then an appointment with my doctor. I pray that it all goes as planned and that the naturopath can give me some ideas for a detox.

              I have just ordered a couple of bottles of cystoprotek. I am continuing with acupuncture and osteopathy/pelvic floor physiotherapy. My pelvic floor is out of whack. I cannot sit for more than a couple minutes without the spasms happening.

              I do feel less exhausted this week. Thankfully! However, sleeping is still not going too well. Monday night I slept for 1.5 hours, last night I slept for 3 hours. Tonight I will probably be exhausted and likely I will sleep more.

              I am positive.

              Be blessed everyone. I will update again soon.

              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. .
              [/I]

              Comment


              • #67
                Re: Botox Today

                Getting meds sometimes can be so frustrating. I feel sometimes doctors and pharmacies don't get that we need the meds, not a choice. I know they are often busy but nine days.

                I am glad your date is getting closer, I hope you get some sleep tonight.
                My are with you all. May you all find a way to peace and joy in your lives.

                Comment


                • #68
                  Re: Botox Today

                  A quicker update than I thought:

                  As I posted two days ago, I had three appointments today. One was a very relaxing massage - so great!

                  NATUROPATH
                  I want to share about the Naturopath appointment. It cost me close to 630 dollars by the time I left there but I figure that's a small amount considering in 2015 I spent $11,000 in medication and travel to specialist appointments for IC.
                  I also have benefits that cover $1000 of naturopath.

                  First of all, I was thankful that she took the time to understand the complete picture. She wanted to know exactly when these symptoms started to try to pinpoint root causes, etc. I was very thorough in my answers. She was attentive and listened with empathy. It was amazing to be given 90 minutes to go through everything thoroughly. (I wish my specialist didn't that!) I told her I was there because conventional medicine seems to be failing except for the gabapentin and instillations - and let's be honest, they're no miracle but they are helpful for pain.

                  She talked about food allergy/sensitivity testing. That's another reason I went to a Naturopath. When she mentioned this, I immediately agreed to doing the testing. I will have the results of this in two weeks.

                  She also indicated that we should only try one herb or supplement at a time. When she said this, I felt like she did know about IC and flares. Then I knew I could trust her.

                  Our steps of action: food allergy testing, I started on an intensive probiotic (30 capsules for $60), once the results come back from food testing she will help me with a detox, and then she listed five recommendations that we will try one at a time - though I am researching each one before I proceed. These are a) cornsilk - I am ify about this one since it is a diuretic, b) N-AG N-acetylglucosamine, c) Berben's formula - I cannot find any information about this, d) Perineural injection therapy - I am most interested in this. It would be injected close to the pudendal nerve which would help the pelvic floor dysfunction (I am all over this as I can't sleep tonight due to intense spasms like I am wearing a belt of pain).

                  Overall, it gave me a sense of hope that maybe there are other ways of getting this under control. I have a follow up in two weeks.

                  MEDICAL DOCTOR APPOINTMENT
                  I am also thankful for a doctor who is helpful and listens. He was in with me for 45 minutes.

                  First of all last week I requested a copy of all of my specialist reports. What I found interesting was the fact I had Hunner's lesions resected and fulgurated three times. I was only aware of once. It also shows throughout the reports that my bladder keeps looking worse instead of better. I still wish my second urologist was still working because I had the most success with him but I do have faith in my current urologist.

                  Secondly, I asked my doctor for diazepam. He seemed very reluctant to give it to me though it has worked with the pelvic floor spasms in the past. He did agree after I explained my reasoning.

                  Thirdly, I asked about birth control. I am unsure if I want to try this or not. I notice my symptoms get worse from ovulation right until my period. Thus I wondered if birth control would help. I also have very painful periods so I thought maybe this could kill two birds with one stone. However, I want to be cautious about this because when I was on birth control before when I wasn't diagnosed but experiencing symptoms, I went off bc because I thought it may be aggravating whatever was going on so I am very cautious about this. I am thinking this one through.

                  All in all with each of these things we may not be able to move forward with any of this until after the botox is completed and I see how that takes. If my bladder paralyzes with the botox and it helps actually blocks the pain signals I will not know how things are hindering me or helping me so then I will hold off on some of the above.

                  One step at a time but I have a new found hope in carrying on in this journey. Blessings!

                  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. .
                  [/I]

                  Comment


                  • #69
                    Re: Botox Today

                    I am pleased that you have found a direction to go in.

                    When my son was very sick with digestive issues I took him to a natural path in PG. She did the allergy testing on him, I felt it was well worth it, he had so food that he could eat, but it turned out I was making him worse by feeding him foods he was allergic too everyday.

                    We had tried three gastro's, a homeopath, and some other doctors. The natural oath could not diagnose him but she helped with his symptoms more than anyone else.

                    I am glad your doc is will to work with you on this.

                    I hope it all goes well
                    My are with you all. May you all find a way to peace and joy in your lives.

                    Comment


                    • #70
                      Re: Botox Today

                      When being treated by more than one doctor, it's important to be sure everyone knows what the others are doing. I hope you will find some effective treatments soon.


                      Donna
                      Stay safe


                      Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
                      Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

                      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: http://www.ic-network.com/patientlinks.html

                      Sub-types https://www.ic-network.com/five-pote...markably-well/

                      Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

                      AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

                      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.
                      [3MG]

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

                      Comment


                      • #71
                        Re: Botox Today

                        Originally posted by ICNDonna View Post
                        When being treated by more than one doctor, it's important to be sure everyone knows what the others are doing. I hope you will find some effective treatments soon.


                        Donna
                        Yes, I agree Donna. I likely will not proceed with anything besides the food allergy testing before I talk to my family doctor and osteopath (by the way osteopathy in Canada looks different than in the states. They are not doctors but rather people who practice osteopath manipulation.)

                        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. .
                        [/I]

                        Comment


                        • #72
                          Re: Botox Today

                          First of all, 10 sleeps until I fly to Vancouver for my procedure. 12 sleeps until the botox procedure. I am excited! I am waiting with hope and expectancy.

                          So I went back to the Naturopath for my food allergy testing results today. I have major allergies to the following: casein, whey, cottage cheese, cow milk, goats milk, egg whites and a moderate allergy to egg yolk and various cheese. The test also indicated that I have a moderate level of Candida in my body - this is probably why my IBS is amped up lately.

                          There are other things as well that I don't think I would have ever caught without this testing.

                          So diary will be completely eliminated from my diet. I am also off all refined sugars as well in four months I can add natural sugars back into my diet such as honey or maple syrup. I will not be adding honey as it makes me flare. For the next four months only I cannot have anything with yeast but that can be added. I have to completely eliminate eggs and egg products.

                          Make no wonder I have started to see a difference in the last two weeks. I have ate very little diary as I have been doing an elimination diet. I basically eat chicken and veggies for lunch and supper. I also eat Royal Gala apples and blueberries. I did try popcorn again (I popped myself) and I am pretty sure it causes burning. I have also discovered that crimini mushrooms are a problem for the IBS. I need to figure out what I can eat for breakfast. I bought some oats today and stevie (not sure about this) and I will try this for breakfasts. I have coconut milk bought too.

                          I will eat just chicken/fish and veggies for the rest of my life if I have to. Red meat seems to make me feel sluggish so I try to stay away.

                          That's it for now.

                          Many blessings
                          Wizbe

                          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. .
                          [/I]

                          Comment


                          • #73
                            Re: Botox Today

                            I am glad you are getting some where. The elimination diets are so hard to do but so worth it.

                            For breakfast I think real oats is good to try, then maybe cream of wheat, or grits, red river, for variety. The reason I think they are good option b/c they have very few ingredience.

                            I drunk Coconut milk, plain unsweetened, I like it, but it us really easy to grab the wrong one and get one with vanilla and or sweetened.


                            I can't do stevia, but it is a herb and I have lots of allergies to herbs.

                            I will be counting your sleeps with you.

                            I really hope it works this time.

                            It sounds like the next few months will be tough, but after that I hope things will go smoothly for your.

                            At least with being off work you have the time to fine tune all this.

                            Eggs is a tough one, but it us do able.

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

                            Comment


                            • #74
                              Re: Botox Today

                              In 10 hours I am scheduled to be at the hospital for my botox procedure. It has finally arrived. I am so thankful. I feel at peace about it as I feel that God revealed something powerful to me in the scriptures on Sunday morning. I am believing that it is going to work. I will update you all.

                              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. .
                              [/I]

                              Comment


                              • #75
                                Re: Botox Today

                                Procedure went well. I am having some bladder cramping that's all. I come back to see my specialist in two weeks. I am VERY hopeful. I am in such a better place spiritually, mentally, and physically since being on short term disability for the last 7 weeks. 3.5 weeks left until I am supposed to return to work. I am extremely hopeful. Thank you everyone for your support. I will let you know how it goes. Many, many blessings and prayers for all of us.

                                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. .
                                [/I]

                                Comment

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