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  • Going to "school" with IC

    This letter is more encouragement than a question I suppose. I just want you all to know that no matter what, I hope you continue with your education. It is the one thing you CAN do, even if it is harder physically or it takes longer than other kids...

    Having an education can be a great source of hope when so many things in our lives seem hopeless....

    What are your dreams? What things would you like to do for a living someday? You can get some great "career" tips from the folks here...

    ...as for me, I got through HS and college in a "fairly" normal manner, (doesn't everyone race to the bathroom between each class???? LOL) but my IC was not as bad as some until the last few years.

    ****BUT!!!!!

    Now that I DO have my degree (in dietetics) I can work my own hours, even schedule individual patients to meet my body's demands...

    ****AND!!!!

    I can make more money in 12 hours a week than I could if I worked as a clerk or food service worker full time....and frankly, I could never work full time, especially a job that kept me on my feet for 8 hours....

    Anyway....go for it...there ARE things you can do....keep plugging along...explore different options....

    If you need any help or encouragement let us know! Julie B


    [This message has been edited by Julie B (edited 03-29-2001).]
    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
    You are so right Julie I wish I had you around when I was in school to give me this pep talk. I am with you and it can happen wih IC. I was 19 when I graduated high school then went onto college. Thanks for your words of encourgement and I hope the teenagers read this wonderful message from you.. God Bless

    Comment


    • #3
      Thanks Julie B for the encouragement. Sometimes I feel like giving up on my dreams because it feels like I'll never be able to get through high school yet alone university, but I know I will.
      My high school is very unsupportive of people with medical problems and I miss so much class time even when I am well enough to attend (by being in the bathroom so much) that I cannot keep up. We have 2 minutes between classes and it's a 10-15 minute round trip to the bathroom. Then when you get to class the door's locked (school policy - we tried to get it changed for me but no luck) and you're not allowed to knock so you have to wait for the teacher to check the door. By the time you get into class it's already half over.
      There is no homeschooling available so I'm working on my own until next year when I can only hope I'll be well enough to get back to regular school - although I'd much rather go to the hospital school if it's offered.
      I am a year behind and I will have to take an extra year of high school which REALLY upsets me as I have always been a straight A student and never dreamed I'd have to repeat a year. But, you gotta do what you gotta do, right? It's better than not graduating at all - better late than never.
      My dreams? I have a lot of dreams. I want to be an actress, but I've almost given up on that - unless my health improves it's pretty much out of the question. I want to go to university regardless. Since I can't travel I will have to let go of my "dream" universities and go to the local one. Luckily it is a 5-minute drive from my house, very convienient. I want to do a double major in sociology/anthropology. I have many other interests, too - but I wat to study something that will be useful to me no matter what my state of health. A drama major just doesn't make a whole lot of sense right now - unless I want to teach which I really don't. I am also interested in psychology...
      Right now it all seems hopeless. But I want to believe it's possible...I just can't...

      Comment


      • #4
        Hey Drama Queen! That explains your name!!! Take it one day at a time, you aren't repeating a year because you FAILED it...you have a lousy disease that already manipulates your life without your permission. Don't add feeling like a failure to the emotional bank....Do your best class by class and just be proud of each accomplishment as if comes!

        (Shoot it took my hubby 8 years to get his bachelor's degree, if you ask around I bet you find that to be quite common.)

        Now about drama....I believe you have to keep that part of you that is creative active in some way. If you tried stage work that may be hard for you....but there are other forms of acting. Could you do TV or commercial acting? Sure...Could you be a news anchor? Could you be a screen play writer or director???? There is even a reporter on one of the news shows that uses a wheelchair. How cool is that? You could even start by writing a column for your local paper critiquing videos as they are released.... (I rarely get to the movies, too uncomfortable most of the time....and I love to read the reviews of the videos since the movie reviews have long since passed...hey you could practice here commenting in our Movie and TV column!) Anything to keep your toes in the creative element....I saw a PBS special last night on Andrew Lloyd Webber...he admits that when they first did Jesus Christ Superstar there was SO much criticism that they decided to release it as a record (yes an LP) before they actually put it on stage! He said (and this is important): That because of the adversity they faced trying to get JCS off the ground, they were "forced" to make it better and better and better....he said that if they hadn't gone through that refining process it would NEVER have been the great Broadway hit that it bacame!

        I was facinated by that admission given by one of the most famous and talented musical writers of the century....

        You are a very intellegent girl, I can tell by the way you write...hang in there and consider yourself hugged! There IS hope! Julie B

        [This message has been edited by Julie B (edited 03-29-2001).]

        [This message has been edited by Julie B (edited 03-29-2001).]
        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


        • #5
          If your parents will work with you on this, you may be able to fix the "locked door" policy. When my oldest son, who is asthmatic, was in high school he was being forced to run a track during pollen season, which naturally caused severe breathing problems. I ended up dealing with the Administrator of the entire school district --- and threatening legal action --- but he was excused from this activity without any problem with his grades.

          I had to get a written statement from his doctor, who was angry about the issue --- and that helped also.

          As you can tell, this kind of thing makes me furious --- it is child abuse of the worst kind.

          Warm 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


          • #6
            Dear Julie,

            Thank you for your encouragement.

            Right now I am in homebound schooling--- which I have been for about half them time since diagnoses.

            I have always been able to keep up, though I am really behind now, due to a long flare, a laproscopy, and soon to be an InterStim trial.

            As for dreams, I have always wanted to go to medical school, and I have the grades, I just need better health.

            Amanda
            ([email protected])

            Comment


            • #7
              To DramaQueen, This disease is a disability and by keeping you locked out of the classroom they are discriminating against someone who cannot make it to class on time because of a disability. This is not fair. This issue should be taken up with the school board and possibly the Human Rights Commission. These kinds of issues make me extremely angry -- the people who are supposed to be helping you to get an education are the ones standing in your way!

              Comment


              • #8
                Thanks so much guys for all the support.
                I really appreciate it.

                The principal, guidance counsellor and all my teachers have been given doctor's notes but they just don't seem to get the message. Believe me my mom has been fighting this out. It is not easy being sick here. The schoolboard is IMPOSSIBLE and really couldn't care less about us. (Good thing I'm not in the hospital - right now there is no possible way for anyone over 16 to do high school there!) That is why I am so eager to go to the hospital school (they are hoping to offer it for 16+ next year). At regular school I can get by okay if I am reasonably well, but I will never be fully tolerated. At the hospital the teachers are used to "sick" people and will not make such a big issues of it.

                The main problem is where I live. (Newfoundland, Canada) Not too many oppritunities here. Not too many good doctors either... but that's another story, maybe appropriate for the Venting board.

                Julie B, stage work is pretty hard...I had to quit choir even while I was in school because I couldn't make it through the performances without leaving to go to the bathroom. In elemantary school my director actually gave me permission to exit quietly whenever I wanted during one of our major productions...but it didn't work out. It was really disrupting, If you watch the video, you can see me mysteriously disappearing all the time!

                I do try to keep creative. I write but I haven't been feeling very creative lately and have a major case of writer's block! Commercials here are rare. There are like 5 commercials produced here. And most of them are for beer.

                Interesting about Andrew Lloyd Webber...
                I know there is hope. It's just at these times when it's hard to believe that. Like Amanda, I can get the grades to do anything I want...I just need better health...

                Thanks all.

                Comment


                • #9
                  Oh, yeah, and the name...that doesn't really have a lot to do with it. I just chose it cause I like the way it sounds, and I like to be the center of attention, etc. And I love to TALK. Haven't you all noticed? LOL!
                  I have never even had any formal training in acting and, partly because of the IC haven't been able to even do school plays and stuff...it's much more of a pipe dream than a reality.

                  Comment


                  • #10
                    DQ and Amanda, did you ever think you find so much motherly/sisterly advice in this place???? I am giggling softly to myself as I read all of these responses....everyone is rooting for you guys! I love it!

                    Hang in there, our young companions! Hugs Julie B

                    [This message has been edited by Julie B (edited 03-29-2001).]
                    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


                    • #11
                      PS pipe dreams are just as good as any other dream!!!!
                      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

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