Announcement

Collapse
No announcement yet.

Hey Everyone

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • Hey Everyone

    Hi... Mine name is Jennifer. I was reading these post and was wondering how everyone made it through High School with the pain. I can never make it through the day when i am hurting. I have missed sooo much school and now we are looking at home schooling? Should i just go to homeschooling? I am confused? I am also confused on what to do for the pain. WHat do yall do when yall have pain? This is all new to me and to my parents we are just wondering in the dark with this disease! Someone to talk to please? Thnks

  • #2
    Hi there Jennifer! First of all let me welcome you; I am the moderator for the teen board....I am pretty old by your standards LOL, 41, but I have had IC since I was a teen and I have three teenagers who still think I am pretty cool, so I hope I can be of support whenever you need it!

    My e-mail is: [email protected]

    If ANY of you e-mail me, I will give you my phone number if you or your parents ever need to talk to someone directly....I just hate to post it here publicly, okay????

    Also, please write to me or any of the administrators at the top of each page at ICN if you have questions or concerns....

    Glad you found us! Hugs Julie B

    [This message has been edited by Julie B (edited 04-01-2001).]

    [This message has been edited by Julie B (edited 04-01-2001).]
    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


    • #3
      Hi Jennifer, welcome to the board.
      If you feel like you can't make it through regular high school, you should definitely look into homeschooling. I know many people (over the net) who are homeschooled - even though not all of them are sick.
      Homeschooling is not available where I live, and right now there is no way for anyone over 16 (who can't attend regular school) to do school. I am hoping to go to school at the hospital next year, if it is offered. Do you have a hospital school where you live? If you want to get ot and be with other people (I do!) that's maybe a better option than homeschooling. The teachers there would be used to "sick" people.
      How old are you? I'm 16 and in grade 11 - although I will be repeating it next year as I haven't been abel to go to school all year. Right now I am working on some courses independantly, but that's all I can do.
      As for pain...what pain meds have you tried? Pyridium Plus is supposed to be good, I just got a prescription for it. My doctor recommends it to provide "some local relief".
      I do know what you mean about the pain - it's hard at school. Although I often think I could easily put up with JUST the pain - if I didn't have to spend my life in the bathroom!
      Please e-mail me if you want to talk some more - [email protected]

      Laura

      Comment


      • #4
        PS. Have you just been diagnosed? Post your story on the Newly Diagnosed board, people might have some suggestions for you there. I have had IC since I was 7, although I wasn't diagnosed until I was 14.

        Comment


        • #5
          Hey... Thanks for the warm welcome. I am glad yall are here to talk to! I am excitied to have someone new to talk to! Well DQueen have you looked at ABEKA homeschooling? It is a video homeschooling. You just pop in a video and do your lessons. Your mom or dad has a teacher book and grades your work and just sends it off to get a report card. If you want me info let me know! Julie B thanks for the welcome to i am sure i will be using your knowledge alot. I was just diagnosed about 3 months ago. But I i hope people write on here regular i like to talk to people. THanks <3Jennifer

          Comment


          • #6
            I was diagnosed when i was a junior, and i ended up on homebound for most of junior and senior years. It was paid for by the school, and tutors came to my house several times a week.
            pain is a big issue for me even today, but i am manageing to go to college with it.
            i have had to change priorties and i cannot stay up late or party
            my email is [email protected]
            will be off line all week due to having surgery tomorrow

            Comment


            • #7
              Jennifer...
              That video homeschooling sounds great! Is that what you're doing?
              I live in Newfoundland, Canada and none of those things qualify as schooling here - you must be taught, tested and graded, by a certified teacher - or you are not permitted to write exams. The school will not pay for it, and the government will only pay $150 a month - not much when the total is over $1000! There is also a teacher shortage so it is very difficult to find teachers that are available for home tutoring. Our credit system works differently, also - on any type of alternative schooling, you can only do the most basic subjects, which gives you 36 credits. Trouble is, you need 42 credits to get into university. So no matter what I do I will have to public school for some courses - if my health does not improve, I'll just have to wait until it does.
              I do envy you, that video school sounds neat!
              Take care,
              Laura

              [email protected]

              Comment


              • #8
                Dear Jennifer,

                I am 17, from Michigan, and have interstitial cystitis as well as fibromyalgia.

                My health problems stared when I was a freshman (I am now a junior) and I have been in a home bound schooling program for about half of the time since then, including now. I think the rest of the year will be homebounnd becuase I am very behind from a long flare, a surgery a few weeks ago, and now, another surgery April 12.

                FEEL FREE to e-mail me if you have any questions or even if you need someone to talk to.

                Amanda
                ([email protected])

                Comment


                • #9
                  Hey everyone...
                  I think this is so sweet that everyone is here for me to talk to. I am sure there will be times where i will need to talk! I have a question now though about sex. I mean I heard it very painful when u have this disease to have intercourse my mom said that should keep me from oing it till i am married but i was just wondering. Does it really?

                  Comment


                  • #10
                    Jennifer, sex can be difficult and painful for someone with IC....but many of us find a way to make it work. Especially when it comes to the point where you want to have children.

                    You can get a lot of information from the Patient Handbook (there is a link on the top of the main message board page) Also there is a column set up just for questions on that. At least you know what to expect going in.

                    I wasn't diagnosed until just a few years ago, but I have had it since I was a teen at least. When I first got married, I was in college and got very sick with "bladder infections". They were sterile of course and IC, not UTIs, but I actually had one doctor accuse me of having multiple partners...IC wasn't something most urologists "believed" in back then.

                    I was so stunned, and ashamed (and I didn't do anything wrong!) that I left feeling hopeless....

                    I also had trouble using certain forms of birth control...anything with latex caused me extreme discomfort, beyond the IC...

                    Later it was docs testing me for STDs....talk about a million ways to strain a marriage!!!! :0

                    You see, what we needed all those years was a true diagnosis (which came in 98), KNOWLEDGE,and finally understanding from each other and the doctors....and things are much much better. It is much easier to deal with a problem if you know exactly what it is....don't you think?

                    At least you have a diagnosis and are light years ahead of the game! Check out the places I suggested for more info! Hugs Julie

                    [This message has been edited by Julie B (edited 04-02-2001).]

                    [This message has been edited by Julie B (edited 04-02-2001).]
                    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

                    Working...
                    X