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  • Things I CAN do!

    Well, it has been nearly 6 years since I was diagnosed, and nearly 10 years since the onset of my most severe IC. I just want to tell people, especially people who are newly diagnosed that you CAN get better.

    Your path to feeling better will not be like mine, so I am not sure it is wise to give a laundry list of things I do to avoid IC's wrath.

    What I want to do is list for you the things I CAN do now that I COULD NOT do 6 years ago:

    Walk 3-4 miles

    I can RIDE MY BIKE!

    I can function like a real person for at least 12 hours a day (maybe it isn't 16-18 like some but I cherish the good times and I think I accomplish more than others do with MORE time on their hands!)

    I can eat some citrus, tomato products, some caffeine, and some chocolate, although none of it in huge quantities.

    I can travel pretty comfortably..........

    AND

    ......this week on vacation I rode both a mule and a horse.........and I didn't have to go to the bathroom much more than anyone else!

    I just want you to know.......that at my worst I figured my life was over. But it wasn't..........and I do things and eat things and experience things I never thought I could again.............

    Hang in there......

    Julie B
    Julie Beyer, MA, RDN
    IC Dietitian, Patient Advocate, Speaker, & Author


    Did you know that up to 94% of interstitial cystitis patients find some symptom relief when they change their diet, and that dietary modification is recommended as a first line treatment for IC? Check out the IC Food List to get started!

    Do you need a little more help understanding the IC Diet? Schedule a phone or video coaching session through the ICN Store today.

    You can also learn more while supporting the ICN message boards by clicking on these book covers and buying the Confident Choices books from the ICN Store:

    ........ ........


    Other IC Diet Resources:

    IC Diet Webinar
    IC Diet Website
    For Health Professionals: Continuing Education About Interstitial Cystitis and Diet
    Free IC Diet Booklet: What Can I Eat?
    Confident Choices IC Diet Blog
    IC Diet Newsletter


    *Let's Connect!*


  • #2
    Julie,
    the first thing I did this morning, while waiting for my wee one to get up was to turn to the boards, and the first thing I read was your letter. Thanks for making me smile first thing in the morning. Your post was uplifting, and it made my day! grouphug Sheri
    Wishing you the best, today, tomorrow, and always! Sheri G

    Comment


    • #3
      Good Morning Julie,

      Your post was the first thing I read this morning. Wow! I am happy for you and thankful to you for sharing it with us. grouphug You are soooo encouraging. Things can and will get better. Thanks for the posting. You made my day and it's only 7:00 a.m. in Oklahoma. Tilly
      Tilly

      Comment


      • #4
        thank you julie for takeing the time to post this it does give us icer hope and i really hope our newbie read this.
        i can do more then i could a year ago i'm slowly getting better and i can eat most things i want. but right now i'm in bladder hell from a uti and now a yeast infection. banghead but it will go away with time. thanks for your post grouphug
        Medicine taken daily or as needed:
        1. Heaprin and Marcaine rescue installment 1 to 3x daily as needed.
        2. MS.Cotin 100mg 3x daily
        3. MSIR 30mg 1 or 2 every 4-6hrs as needed for breakthrew pain.
        4. Fentanyl 100 mg Change every 48hrs.
        5. Gentamicin 80mg install after each rescue treatment
        5 Leviquin 500mg self start as needed.
        6. Klonopin 1 or 2 daily as needed.
        7. Prosed/DS as 1 every 6hrs as needed.





        I have IC, but IC doesn't have me anymore!

        Comment


        • #5
          Julie,
          Great post! I also have far more good days than bad and do most everything I want. I am glad you found a good treatment combo that works for you.
          Jolene

          "Life is what happens when you are making other plans" John Lennon

          IC diet cheat sheet....http://www.ic-network.com/diet/dietcheatsheet.html

          Information for Patients can be found here.
          http://www.ic-network.com/patientlinks.html


          Jen's tips for great IC sex..http://www.ic-network.com/forum/showthread.php?t=22522&highlight=jens+tips[/url]




          Newbie Angel...I will be happy to answer any questions or just listen. Email me at [email protected]

          "IC Angel Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you."

          Comment


          • #6
            ((((((((julie)))))))))))))
            what a wonderful post! Bring me back some of that Hawaii Sunshine! Glad to hear you and C are having a great time and that IC isn't stopping you from enjoying yourself.

            Julie you truly have learned what it is to "pace" oneself.....I think that is really important.

            Hugs,
            y.
            Somewhere there's a reason /Why things go like they do /Somewhere there's a reason /Why some things just fall through /We don't always see them /For what they really are /But I know there's a reason /Just can't see it from this far /Maybe I don't like it, /But I have no choice /I know that somewhere, /Someone hears my voice / I thought I knew it all /I thought I had it made /How could it end this way? /I thought I knew Somewhere there's a reason /Why things don't go my way /Somewhere there's a reason /That I cannot explain /Just like the change of season, /Just may not be my turn /But I know there's a reason, /The lesson's mine to learn

            Comment


            • #7
              Well, yes the vacation is coming to a close.....and Hawaii is having some interesting weather today! WIND like crazy, one of the sailboats that has been anchored off the beach was there on its side this morning.....People were great.........cheering the guys on as they tried to right their craft and get it back on water before anything happened to it. Gotta love the hang loose mentality........

              I am still doing well, and as soon as I get my pictures off Carolyn's camera I will post the mule and horse pics LOL.....I am telling you it was a blast!

              Hugs to you all.............I will be back to the groove of ICN soon.......... :-) grouphug
              Julie Beyer, MA, RDN
              IC Dietitian, Patient Advocate, Speaker, & Author


              Did you know that up to 94% of interstitial cystitis patients find some symptom relief when they change their diet, and that dietary modification is recommended as a first line treatment for IC? Check out the IC Food List to get started!

              Do you need a little more help understanding the IC Diet? Schedule a phone or video coaching session through the ICN Store today.

              You can also learn more while supporting the ICN message boards by clicking on these book covers and buying the Confident Choices books from the ICN Store:

              ........ ........


              Other IC Diet Resources:

              IC Diet Webinar
              IC Diet Website
              For Health Professionals: Continuing Education About Interstitial Cystitis and Diet
              Free IC Diet Booklet: What Can I Eat?
              Confident Choices IC Diet Blog
              IC Diet Newsletter


              *Let's Connect!*

              Comment


              • #8
                {{Julie!}}
                Hawaii??? I'm sooo jealous! Going on vacation in Jan. for a short 2 hour flight had me frazzled. (Not knowing whether I'd spend lots of time in the lavatory or consoling a crying two year old.) But I can say it was smooth sailing in the skies! wink
                For a trip like yours, wow, I'm impressed!! I hope someday to be there and be able to take that long flight.
                I'm so glad you're doing well. And I know this had to be such fun....Take care and enjoy the rest of it!!
                Tons of support,
                Jaime

                IC angel helping families in need for the holidays. [email protected]

                Comment


                • #9
                  Hi Julie!

                  What a great message! I am so encouraged that I can do more, once I get the IC diet controlled.
                  This weekend I am trying a recipe from the IC cookbook! I am so excited about that! Hope your having a great time in Hawaii! I have a friend who is visiting Hawaii too and I can't wait until she gets back to tell me about it!

                  Arcticfox hi

                  Comment


                  • #10
                    Yeah Julie I am up doing laundry and looking out the window at 12" of N.C. snow. I was delighted to read your post! I have been diagnosed X 2 yrs,so your post was quite uplifting. I hope Hawaii was wonderful it sounds as though it was wonderful. It was soooo encouraging to read of the way you have regained some of your pre-IC life. grouphug Thanks for the post!!
                    IC diagnosed in 2002
                    Endometriosis (per gyn)
                    Tubal ligation 1992
                    MVP

                    Meds:
                    Fem Con Fe,Prosed DS, Rescue Instillations,Vicodin (as needed), Valium (as needed),Aloe Vera Caps and Cystoprotek

                    Meds tried:
                    Elmiron (fuzzy thinking)
                    Neurontin (fuzzier thinking)
                    Allegra
                    Enabalex(bladder felt like a rock)
                    Ambien CR (severe flare after one dose)

                    Mother of two grown boys, RN ,wife and mother of a golden retriever and a gray tabby
                    Antique collector and love a good flea market

                    Just trying to find peace in the maddness of my IC world
                    Cynthia

                    Comment


                    • #11
                      People are asking me what I have done to get better.........hmmmm.....One thing I have found out over time is that IC is individual and the treatments are also. I do take medication, atarax is the mainstay, and I take one vicodin a night with an extended acting Tylenol.

                      What those do for me is get me a decent night's rest. I still get up 3-4 times, but not 20.....

                      And when I need to rest during the day, I do. It is hard sometimes, my husband will wonder how I can be perfectly fine one minute then falling asleep the next. I have given up trying to figure out the fatigue, it is what it is.

                      As Yvette said, it is important to pace yourself. In this post, I really don't want to focus on what I cannot do, because it is plenty. Then again, my diabetic patients have to watch what they eat, and arthritis patients can't climb mountains, and cancer patients can lose their hair during treatment.

                      Life changes all the time. This is our change. But I don't sleep on the bathroom floor anymore, and I can go shopping at the mall without making everyone crazy with bathroom stops.

                      Each moment of feeling good is a blessing.

                      Let me know how YOU are all doing? Are there other people who want to jump on this and tell people what they CAN do, instead of focusing on what they can't do?

                      On my way home now..........I will check this when I get back to Michigan! XOXOXOXOX
                      Julie Beyer, MA, RDN
                      IC Dietitian, Patient Advocate, Speaker, & Author


                      Did you know that up to 94% of interstitial cystitis patients find some symptom relief when they change their diet, and that dietary modification is recommended as a first line treatment for IC? Check out the IC Food List to get started!

                      Do you need a little more help understanding the IC Diet? Schedule a phone or video coaching session through the ICN Store today.

                      You can also learn more while supporting the ICN message boards by clicking on these book covers and buying the Confident Choices books from the ICN Store:

                      ........ ........


                      Other IC Diet Resources:

                      IC Diet Webinar
                      IC Diet Website
                      For Health Professionals: Continuing Education About Interstitial Cystitis and Diet
                      Free IC Diet Booklet: What Can I Eat?
                      Confident Choices IC Diet Blog
                      IC Diet Newsletter


                      *Let's Connect!*

                      Comment


                      • #12
                        Hey great post Julie, very uplifting and I know you are having a great time, being able to do so many things, that you have not done in a while, way to go! keep on truckin, hugs Iris. hi hat
                        Today and every day you are loved, so don't be anxious about tomorrow, God will take care of you tomorrow; Live one day at a time.

                        Comment


                        • #13
                          This is great Julie. It's so easy to focus on what we cannot do. And when I do this, I just feel worse.

                          What can I do? I now go hiking and love it. In the past I never would have attempted it....what would I do if I needed the bathroom?

                          It used to seem so difficult, but it isn't. I pee before I leave home. If there is a bathroom where I am hiking, I use it before I hit the trails. Then when I gotta go, I just find a rock and "go" behind it. At first I was embarrassed to tell my friends, but now they are looking for rocks for me.

                          Getting out and enjoying myself feels so good, and liberating. I think I actually need to pee less often when I'm not stresed about it.

                          Yes, I can do things where there is no bathroom.

                          Comment


                          • #14
                            YES! Less stress, less pee!

                            I made it home this morning after a night on the plane. It was my only challenging day, with several trips up to the bathroom on the plane on the 8 hour flight. I finally dug into my bag for an extra vicodin and some pyridium. No apologies for making a little noise in the middle of the night. Jill was the one who taught me if I need meds take them, if I need to rest, rest.

                            I came home and we bubbled over with our stories.......then I took a 4 hour "nap" and only got up once to void.

                            Who else has good stuff they can do???? :-)
                            Julie Beyer, MA, RDN
                            IC Dietitian, Patient Advocate, Speaker, & Author


                            Did you know that up to 94% of interstitial cystitis patients find some symptom relief when they change their diet, and that dietary modification is recommended as a first line treatment for IC? Check out the IC Food List to get started!

                            Do you need a little more help understanding the IC Diet? Schedule a phone or video coaching session through the ICN Store today.

                            You can also learn more while supporting the ICN message boards by clicking on these book covers and buying the Confident Choices books from the ICN Store:

                            ........ ........


                            Other IC Diet Resources:

                            IC Diet Webinar
                            IC Diet Website
                            For Health Professionals: Continuing Education About Interstitial Cystitis and Diet
                            Free IC Diet Booklet: What Can I Eat?
                            Confident Choices IC Diet Blog
                            IC Diet Newsletter


                            *Let's Connect!*

                            Comment


                            • #15
                              Well, lucky me, we have been all over the place this weekend looking for a new toilet and shower. We are getting ready for this weekend.
                              Total bathroom makeover. What fun, huh?
                              But only one time I came running home to use the bathroom. That's so good for me, cause I've been in a flare for two weeks.
                              Something I'm looking forward to is hot weather. I have finally taught myself to use the "woods" when we go out on the lake. I could always do it before being dx'ed then couldn't til last year. So I've been able to add that back into my lifestyle. We live for the water around here.
                              I'm so glad you had a great time on your trip!
                              Hugs! grouphug
                              Tons of support,
                              Jaime

                              IC angel helping families in need for the holidays. [email protected]

                              Comment

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