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  1. #1
    ICN Member green_the_fish's Avatar
    Join Date
    Sep 2004
    A land called Honalee

    I broke down at school today crying, went home...

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    I'll post more later in a reply to this message...need to calm down...

    Current IC treatments: menstrual suppression, avoiding trigger beverages
    Current bile reflux treatmentss: ursodiol, Marinol, Neurontin

  2. #2
    IC Friend kelly McC's Avatar
    Join Date
    Mar 2004
    Rochester New York
    To the world you might be one person but to one person you might be the world..
    I am a newbie Angel ~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.

  3. #3
    Registered User amaris's Avatar
    Join Date
    Mar 2004
    Durham, NC
    Sending you a warm hug and a prayer for healing...

  4. #4
    ICN Member green_the_fish's Avatar
    Join Date
    Sep 2004
    A land called Honalee
    Okay, I'm ready.
    The pain kept me up last night, so I didn't get to sleep until 12:30. I woke up at night to urinate. When the alarm clock rang at 6, it took me a half an hour to even become aware that it was going off. I missed my bus, my mom had to drive me too school.
    I could feel myself on the verge of tears at school. At the end of English Honors, I just started to cry. That's my favorite class, too. The teacher was really nice about it and kept me after class to talk to me. After a few minutes, he brought over the school councellor. She brought me over to her office and talked to me there. I was worried that she would think I was crazy or trying to play hooky, but she seemed to understand.
    The councellor had once gone through a period of bladder spasms, and once had a painful cyst in her ovary. She talked to me for hours and let me cry. Then, the vice principal came over to talk to me. She said that she had interstitial cystitis! What are the odds? She says that Elmiron changed her life. It worked very fast for her, within one week. I'm glad that I have people at my school who understand. My councellor told me to not go back to school this week, though. She says my health should be the top priority in my life.
    I think I'll cut the dose of Ditropan XL down to 15 mg. Should I?
    I don't think that Ditropan is doing me any good, actually. It said on their website that it should take one or so to take effect, and I've been taking it for 11 days, with 5 of those days being on double the highest prescribed dose on their site. It should be helping by now, right?
    I have a DMSO treatment scheduled for Thursday. I'm going to have to spend these next few days preparing myself for the pain. On the phone, the urology clinic said that they would schedule a cystoscopy with the works ASAP. They'll schedule it with my mom on Thursday, and said that it should take place within a week, "no promises", though. I also bought some Prelief today, I just took two pills.
    I'm sad that I broke down at school, but happy that I seem to be on the right track here. Hopefully, this nightmare of pain will end soon, and I'll be able to wake up to my life.

    Current IC treatments: menstrual suppression, avoiding trigger beverages
    Current bile reflux treatmentss: ursodiol, Marinol, Neurontin

  5. #5
    ICN Member work it's Avatar
    Join Date
    Aug 2004
    Hey green, what a day you had, so sorry to hear that. That is so nice of the school to understand what you are going through. Sounds like you are strong person so I know you will be okay with your next DMSO treatment. As for the Ditropan XL call the Dr. or have your mom call and speak with them over the phone to see what they suggest. I will be thnking of you.


  6. #6
    Support Leader kadi's Avatar
    Join Date
    Dec 2003
    Don't worry, I've had kids fall apart in my high school classes before & I've never seen anyone give them a hard time about it. I'm so glad your teacher, counselor, & VP were helpful. About the DMSO treatments, as much as possible, try to stay relaxed about them. Don't forget to ask your doctor about taking Pyridium &/or a painkiller first if you're worried about pain. Those things are helpful to me. I usually take them about 2 hours before the treatment so they're already in the system by the time treatment starts. The DMSO cocktails have helped me enormously & I'll be praying for you that they or something else is equally good for you.

    Wishing you only good things & better days SOON!

    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.

    New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
    Source - Pinterest

    Current treatments:
    -IC diet
    -Elavil 50mg at night
    -Continuous use birth control pills (4-5 periods/year)
    -Heparin/Marcaine/Sodium Bicarb home instills at night 3-4x per week, more often if needed
    -Pyridium if needed,
    -Pain medicine at bedtime daily, as needed during the day several times per week
    -Antibiotic when doing an instillation to prevent UTI
    -Colace & SmartFiber to treat chronic constipation from meds, Fleet enema as needed
    -Dye Free Benadryl 50 mg at bedtime
    -"Your Pace Yoga: Relieving Pelvic Pain" dvd, walking, treadmill at gym
    -Managing stress= VERY important!
    -Fur therapy: Hugging the cat!

  7. #7
    ICN Member
    Join Date
    Jan 2002
    Memphis, TN
    Green...Sometimes a good melt down is just what the doctor ordered. I don't know about you but I tend to internalize my emotions, grab on to them, and do not let go until they just bubble up and explode...MELT DOWN :yikes:

    You know what? It sounds to me like this situation had a good outcome. Not only does your teacher understand what you are going through, but so does the School Councilor. And then, to top it off, you found out the the Vice P has IC. about friends at the top. :woohoo:

    Take the time given to you to rest, recuperate and recharge.

    Shopping??? Did someone mention shopping? I'll get my hat... ;-)

    Where I can be found most days.

    Link to the ICN Patient Handbook:

    Link to the IC Diet:

    IC 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.

  8. #8
    ICN Member Katrina's Avatar
    Join Date
    Aug 2001
    Green Bay WI
    (((green the fish))) I am so sorry it really hit you hard today....don't feel bad, that happens sometimes. I am so glad your vice president at school has IC....maybe she can be a sourse of support there for you. I agree with you about the Ditropan. I hope your treatment does start going better for you. Let me know if there is anything more I can do ok?

    Faith, Hope, and Love,

    I believe God is using me. He uses me for God. Things I gain from all my suffering are meant to help others. I hope I can help you too. Email me or start a chat if you like my help or anything. I CARE!Illnesses: IC,IBS, IBD, GERD, PFD, Epilepsy, Endo, Allergies, RLM,Rapid heart beat, low blood pressure,Gastritis,Gall stones,Tendonitis,migraines, Shingles, Prolapsed pouch,ext. fatigue (current problem) I have seen periods of remission and I have seen them end and return. At this time remission is over and working on getting it back!

    IC 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.
    or find me on facebook
    Be the Miracle! & Pay it Forward! please contact me...I am here to help!

  9. #9
    Support Leader Sarojini's Avatar
    Join Date
    Jan 2004
    North Carolina
    Green... I'm so sorry you had a bad day, but I'm glad you found there were understanding people at school. I hope you have a better night tonight!!


    *Diagnosed with severe IC in 2004
    *Also diagnosed with PFD, fibromyalgia, chronic myofascial pain, IBS, migraines, allergies/asthma, dermatographism
    *Kept trying a million different treatments for all these things until I found what works, and I am doing okay these days with the help of a cocktail of medications and the InterStim, which was first placed in 2007. [I have had 2 revisions - one in 2010 when my battery died and had to be replaced, and one complete replacement (lead and generator) in 2012 after a fall on my stairs caused my lead to move.]
    *Current meds include Atarax (50mg at night), Lyrica (150mg twice a day), Xanax (0.5mg at night and as needed), Zanaflex (4mg at night), hydrocodone (10/325, every 6 hours as needed), Advair, Nasonex, Singulair (10mg at night), oral contraceptives, home instills containing Elmiron and Marcaine (as often as I need to do them).

    **I am not a medical authority nor do I offer definitive medical advice. 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.

  10. #10
    Registered User XoChelsey03Xo's Avatar
    Join Date
    Sep 2004
    Orange Park, FL
    At least your teachers were nice to you about it. Chelsey

  11. #11
    ICN Founder icnmgrjill's Avatar
    Join Date
    Mar 2000
    {{{{Green******** I just love everyone's responses to you! Yes, we've all had those meltdowns... nothing to be ashamed of. Sometimes it's more healing to let it out... then to keep it all in. But, wow! This is really exciting because you have not one, but two people at school who totally get it. I think you should spend some time with that principal and talk about IC. Bring your mom too. Sometimes just having someone to ask questions to is the most comforting of all. I'd be more than happy to talk with you and your mom too!

    BTW... I first had my symptoms when in Junior High School and can remember the total embarassment of having teachers say "You AGAIN" whenever I asked for a restroom hall pass. Or, worse, having my mom explain to teachers that while on a field trip, they would have to stop and let me use the restroom. But, I got through it... and you will tool Best of all, maybe you'll write the best book/resource guide for other IC high school students to help them figure out how to handle it better.
    Would you like to talk with someone about your IC struggles? The ICN now offers personal coaching sessions that include myself, Julie Beyer RD on the diet and Dr. Heather Howard on Sexuality.

    Looking for books, magazines & reports on IC? Please visit the ICN Shop at: Your ICN subscription & purchases in our shop support these message boards, chats and special events. BECOME AN ICN ANGEL TODAY!

    Please remember that the information on the ICN is provided with the understanding that ICN, its founder, staff, volunteers, and participants are not engaged in rendering medical or professional medical services. We cannot and do not give medical advice. Only your personal physician can do this for you.

  12. #12
    Registered User lindy lou's Avatar
    Join Date
    Aug 2004

    I admire you!

    Dear Green,

    Like Kadi, I am a high school teacher and see kids fall apart and pick themselves up and keep on going all the time. Having IC isn't easy for me with all my life experiences and I can't imagine being a young adult facing what you do. Keep your chin up and know that there are lots of people cheering you on, at school, your family and all of us here. I can't give you much real practical experience 'cuz I'm a fairly newbie at this too. I do know that the first month was the most difficult, not only the pain but the emotional part. When I woke up in the middle of the night and couldn't sleep, I usually came here and found a lot of support and understanding. I've had students with severe Crohn's, Rhumatoid Arthritis, and Type I Diabetes and encouraging them to learn about their disease and then writing about it in a journal helped them deal with it. Writing can be healing for you and is a record of your journey. Then in a couple of months, or years, when you read what you wrote down at the beginning of your IC, I'm sure you will be surprised how well you managed all this. Have courage and remember that God loves you. Linda

  13. #13
    ICN Member ICLori's Avatar
    Join Date
    Jun 2004
    (((HUGS))) It's completely normal to have some meltdowns especially when you are first diagnosed with this/first suffering with it. It's really a big loss, to get used to having an illness, when you've been healthy before, and you don't know when the pain will end and you will go back to normal again. Like everyone else said, I think that you shouldn't feel bad about crying when you need to, or worry about what anyone else thinks. I think your fellow students probably just feel bad for you that you are hurting so much and they wish they could help.

    I am glad you have some understanding people to help you at school, and that's really great about your VP having IC! I mean, it's not great she has IC, I feel sorry for anyone with IC, but it's great that she totally understands.

    Ditropan doesn't always work for everyone with IC. It didn't work for me. It's a medicine that seems to have the most success with overactive bladder (incontinence) and only very limited success with IC patients. So I am not surprised, personally, that it didn't help you. That's what I was talking about, when I said a person has to have a lot of patience with this disease - sometimes you gotta kiss a lot of frogs before you find your prince, and it's that way with IC type meds too - sometimes you have to try several before you become comfortable. Don't give up hope!

    On your next visit to the doc, tell him/her it's not working, ask to try some other meds (such as Elavil, Atarax, Elmiron etc.). I'm glad they are going to try to get you in for a hydrodistention right away. Many IC'ers go into remission for some time (a month, two months, six months, sometimes longer) after a hydrodistention, so hopefully you will too! In fact some people manage their disease just with hydrodistentions alone, and they feel comfortable most of the time! So please don't give up, you are just at the start of your journey and this is the worst part, but eventually you will get to the point where you say "hey I'm feeling just fine" and you will be glad you didn't give up or lose hope.

    I will keep you in my thoughts and prayers and keep my fingers crossed for you. Just hang on sweetie, it will get better I promise, but you just have to live through a little more of this to get to the other side.

    I like your quote by the way! Very inspirational, good way of looking at things!

    Honey, the most important thing is just to keep breathing, keep putting one foot in front of the other. It will get better - I can't promise you which day it will get better, I can't give you a timeframe - but I can promise you, it WILL get better. You just gotta hang in there long enough.

    Blessings, Lori

  14. #14
    ICN Member windwalker's Avatar
    Join Date
    May 2004
    I hope you are doing better, sometimes we all gotta let it out. Glad your teachers and all were so understanding, we know its a hard thing to go through. (((HUGS)))!!!!!! Sounds like ya got a lot of support

  15. #15
    No longer active mayray518's Avatar
    Join Date
    Apr 2002
    Rockville, MD
    Girl, I used to cry every day when IC was bad. Now I Havent cried in years. I think I got all cried out, nothing upsets me. I feel good now and so will you. I know something will help. I am sorry for all of us but you are too young to have to worry about this. This site is a good place to come.

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