View Full Version : miserable with ic :(
10-14-2004, 11:02 AM
i have just been diagnosed with ic a week ago. i am 16. i just started my junior year in high school which as you all know is your most important year in high school because its when you start thinking and looking into colleges. last year, when i was in 10th grade, i started getting very uncomfortable in class not all the time though. just every so often. soon i addressed my issue with my doctor who referred me to a ped. urologist. he told me i had urinary frequency and should start on ditropan right away. unfortunately, i am not good at swallowing pills so i was getting very frustrated. i resorted to wearing serenity pads and skirts and sweatpants, anything that wasnt tight. anyway, to the point, since i have been diagnosed, i have been missing school like crazy, making up excuses to my friends. i was just wondering are a lot of you homeschooled? or are you getting through school? i have told my teachers about this problem and they totally understood. but this is making me so miserable since i miss my friends, my boyfriend, and school. and the psats are coming up! im so scared because its a 3 hour long test! help!
10-14-2004, 11:13 AM
I'm so sorry that you have to go through this at such a young age. I hope your doctor has given you a copy of the diet & gets you on a good medicaication. Hugs, Kathi
10-14-2004, 11:35 AM
:welcome: ;) :hi: we have a few gals on herre your age.... I am sorry you have IC... you found the right place for comfort, support & a wealth of info...
Any questions you may have just ask away.. I can't help you on the home scholled one tho.
10-14-2004, 11:53 AM
Hey I'm 19 and I understand what your going through. I was diagnosed about a mo. ago for IC. I believe I had it too in high school. My senior year I believe I missed 40 days of school. I was always in so much pain and couldn't even get out of the bed. I'm in college now and do still miss several classes due to the pain from IC. My uro wrote me a note stating that there may be times I have to miss school due to the pain. Your doctor should be able to write you one. Also, IC is under the American Disability Act and you could get a doctor note stating that you are unable to sit through a 3 hour psat test and will need frequent bathroom breaks. I'm hearing impaired also and I do know that with the proper paper work they do allow accomidations. If I were you I would check into it. Chelsey
10-14-2004, 11:55 AM
Talk with your school counselor. You may be eligible for special education service including extended time on testing like PSAT and SAT. My son had a traumatic brain injury in May of his junior year. He had memory losses and could not take the ACT that June. In the fall of his senior year, we applied for extended time on the ACT since it would, but sent the 14 page report from the neuropsychologist and on the second try, they granted it. He was able to take the ACT over a four day period in the counselor's office. It's worth a try but time is short before the PSAT. Good luck!
10-15-2004, 05:16 AM
I was homeschooled for highschool but now I'm in college.... I did the ABEKA DVD homeschooling program. They have a website if you want to check it out.... just type in ABEKA Pensacola in any search engine.... Anyways, it was very convenient for me to write my tests when I felt up to it.... 11pm at night or 8am in the morning whenever.... The DVD's have real teachers and students in them... they are absolutely great... they've given me a GREAT backround for college.... Homeschooling is definately something to consider, however it is not a cop-out... If you want success, you will still need to work hard, maybe just sporadically throughout the day though. Anyways, hope this helps... feel free to ask any questions..
Oh yeah, ACE School of Tommorow is also a good program... it's much easier than ABEKA... ABEKA is like 1yr ahead of regular schools and alot of work. Some schools in my area actually do, i.e., tenth grade ABEKA over tenth and eleventh grade because it is sooo much work... I did'nt do it that way though... I did tenth grade over tenth grade and soooo on....
10-15-2004, 05:42 AM
I just wanted to add the Ditropan comes in a patch form too if you can't swallow pills. My doctor gave me that option but I haven't tried it.
10-15-2004, 05:46 AM
I'd just like to :welcome: you to the IC Network. I'm so sorry you have developed IC. You'll find diet information in the Patient Handbook at http://www.ic-network.com/handbook --- I do recommend giving the diet a try. It can be a huge help.
I also have a little hint if you have trouble swallowing pills. If you take a sip of water first, then put the pill towards the back of your tongue. Then fill your mouth with water, tip your chin down, then swallow. Someone on one of the boards shared this with us many months ago and it really helps get even large pills down.
10-16-2004, 04:53 AM
Hi there :hi:
I know how you feel, I'm a sophomore in high school. I haven't gotten the official IC diagnosis yet, but I'm getting my cystoscopy soon. My docs think I have IC because I'm quite symptomatic :(
I wish I could make you feel better. All I can say is that I relate. I have posts going in the vent section, some of them are about how hard it is to go to high school with IC.
Y'know what I did? I ended up seeing all of my teachers in private and explaining my symptoms to them. Now, I have permission to be late to every class so that I can go to the bathroom between periods. Also, my teachers let me go during class without asking questions. I know it's totally awkward, but I think you should talk to your teachers and school councellors about your IC.
I hope you feel better soon. IC does suck, big time! :dizzy:
10-19-2004, 01:01 PM
Thanks for all the advice people!
Greenthefish--i have talked to my guidance counseler...i talk to her about like everyday haha i go through panic attacks at school which get me so stressed out. today she actually referred me to some therapists. i also wanted to ask you a couple of questions seeing that you are around my age in high school. do you ever get flareups? and do you experience pain like other ic patients? and also what meds are you on?
thanks alot :)
10-21-2004, 10:21 PM
Well, I consider any time that I'm in pain to be a flare-up. That also answers your question about whether or not I have pain: I do! Pain is my main symptom right now. My frequency was about 35 a day a few weeks ago, but now that it's dropped down to about 15, the pain is the thing that bothers me the most. It feels like there's a hamster in by bladder, and it's trying to gnaw its way down my urethra! Right now I'm on Elmirion and Perocet. I'll also be taking some antibiotics for the next few days, since I just had a cysto/hydro yesterday. I also have some Prelief, Detrol (and Ditropan XL, which is basically the same thing), and Pyridium. I'm not sure how much these help, but I take them when I'm desperate. I've also been on the IC diet for about a month. It's still kinda crappy to not be able to have pizza, but the diet isn't all that bad. Many people are on diets, for weight loss, diabetes, and stuff like that. I read about the IC diet on this site, it's in the handbook section.
I've had panic attacks, too. My last one was at my uro's office! You can probably find that post in the "vent" section, if you'd want to read a crazy thing like that! I talk to my guidance councellor a few times a week. She talks to my teachers a bit too, which is helpful.
I'm in a kinda weird situation though, the docs aren't really sure if I have IC or not. I'm being treated for it, but I have an odd range of symptoms :hmm: I might have atypical IC or something messed up like that. I dunno. Well, anyway, I'm glad to help you in any way that I can :thumbsup:
10-25-2004, 09:16 AM
You young ladies hit the needle on the head, IC sucks big time!!!!
10-25-2004, 09:29 AM
hey hun- omg i think we are the same as far as time goes, it started at age 15 for me and my diag. wasn't until this past january. it is hard, i missed constantly throughout junior yr it seriously got bad... nowi have made it to college through exemptions in high school from my doc, but college is tougher because it doesnt have to obey the same rules as public school grr! its hard, my attitude goes back and forth between " i will not let this get me down or take over!" and then bad flares come and you just wanna give up it's so overwhelming, but take small bites to get caught up and it will be okay. if you ever need to chat im on aim and yahoo so feel free if u need to relate! -hugs- amanda from west mi... my aim: lalinabonita
10-26-2004, 10:38 PM
Hey I am a senior in High school and i have had IC since I was 12 and its sucked pretty bad. I ended up stopping going to school in 9th grade. I was really unhappy about it at first but I am fine with it now. I lost a lot of friends but the true ones stuck by me. In my school district they have whats called home/hospital. Which is where you get most of the same work as everyone else but a tutor comes over for 5 hours a week and helps you. I love it, I get to keep up with every one else but I dont have to be at school. If you have anymore questions dont be afraid to ask. Deni_tindall@yahoo.com
10-27-2004, 04:39 AM
Hey im glad i have found some more people like me in here! As of right now i go to a adult urologist, a pediatric urologist and a urogyno. I have been thinking of homeschoolng for a while but I'm still not sure. I just cant wait til my next appt so maybe my new doctor can prescribe some really good stuff unlike ditropan xl and imipramine! I also am starting to go to a therapist :dizzy: Well i guess thats all i have to say right now!
xoxo :cat: katie
10-27-2004, 05:06 AM
The initial diagnosis stinks as do the feeling of being that you are the only one stuck with this illness. Then when you start missing days, spend half the day in the potty, or double over in pain and have people look at you like you are :loco: I was diagnosed in June 2003 and have suffered alot of the same issues. The difference: I am 34, a registered nurse temporarily on hiatus because I can't stand long enough--I am an ER nurse. BTW you will get through this--with your parent's help, confidantes that you have at home, and a huge one on this board. Know we are all here from you. Your mom might want to post to set limits on the vocabulary and stuff. OH yeah I also have a blond wonderful four year that is my joy. :dance: Know that your parents feel that way too. Please let me know if you need anything,K?
Hugs and :welcome: ,
10-27-2004, 07:07 AM
It took me five years to finally get some thing that started to semi work, and it still doesnt really work that well. Not to be discouraging but I know there will be something that will help us. We are young and soon there will be some new treatment that well work miracles. Oh by the way I went to a therapist also and the one I had was really weird and I felt like I couldnt trust her and she was judging me. Anyways things will be good. Keep your chin up... I am so lame I know. Ha ha ha.
10-27-2004, 07:47 AM
even tho i wasn't dx with ic in school i did and still do have a lot of bladder and kidney problems and talk about embrassing in some cases even tho i had an doctor note if one of my teacher was out the other teacher wouldn't let me go to the restroom and i couldn't hold it so needless to say i had a few accidents on my self. kids can be so curel they called me names like pee pee pants which really hurt my feelings :( they teased me a lot because i had no control over my bladder.
I was homeschooled for a while after my third surgery which did help control my bladder but after i returned to school they still teased me. I was thankful to move away and when i came back to that school we was in high school by that point so the teasing stopped i did get behind but with the teacher coming to the home they helped me catch up and my grades came back up also.
So please don't give up you will catch up and be able to control these systoms soon.
just keep believeing.
sending you hugs and prayers
11-02-2004, 05:43 PM
Hey every one I was just wondering how you guys deal with family, friends, and boy friends. Any one got any ideas how to help them deal with it easier and try to understand that I am the one going through the pain and I am not intentionaly trying to make their lives miserable?
11-03-2004, 02:18 AM
I don't talk about IC with my friends. I told my best friend when I went for the cysto/hydro and biopsy, and that I was diagnosed with IC. However, I've tried not to make IC a big part of our friendship. My best friend was shocked when she saw how much meds I take.... and I did scare her once when I took pain meds (before going to bed at a sleepover) and my eyes started looking like I'm "stoned." I also have thyroid disease (Hashimoto's), which makes me tired alot. I had a bad experience in the past when I told someone that I went on a special diet for my thyroid, a mean girl (who use to be my friend) overheard me saying that and went and told everyone that I'm on a diet for my "thighs" ugh.....everyone then started coming up to me and telling me that I don't need to be dieting for my "thighs" and that I already look very thin.... craziness
Sometimes I can't go to amusement parks/the mall because I'm in pain or tired, but my best friend and family have always been pretty much understanding. I haven't really been angry with my friend about IC but I have had a few blow ups towards my family. It upsets me alot if a family member buys groceries and buys everything they like to eat, and nothing that I'm able to eat. My mom is very understanding and really looks out for me... I can't really say the same for my dad or brother. I don't think that they take IC that seriously.... I've tried to explain it to them a million times but it just doensn't seem to sink in. When I am in pain I don't have the energy to fight with people, consequently I let a lot of hurtful comments and situations slide, in order to avoid a fight. My dad has stopped making spaghetti though which is his way of "helping" me avoid tomatoes..... I think I'm going to ask for my cysto/hydro pics to show them what my bladder looks like...
Anyways, I guess enough said!
11-03-2004, 04:28 AM
I haven't really told alot of my friends, I just don't think they really understand that it is a disease and its hard to go through. I think they just think its some little thing where i have to go to the bathroom for. But they didn't get how i have to change my whole life around. my food, my clothes, things i do, etc. I haven't talked to any of my friends in about 2 weeks since I haven't been in school and none of them have bothered to call either. What good friends I have! I think you should only tell a few of your good friends that will understand. You can see what happened with sacausa, and dont let that happen to you. some girls can be so mean sometimes.
I don't really care though, because I know we probably won't see each other after high school. But I do know I will see my boyfriend. My boyfriend means soooo much to him and I love him so much. We have been together for 2 years now and we really truly love each other. He understands what I am going through and is there for me. He gets sad when I dont go to school or I get really miserable sometimes. I feel so bad though because I know I will probably never be able to have sex because it hurts so much. If you have a boyfriend i hope he understands and respects what is going on with you! I think you should sit him down and tell him everything and what goes on with ic and what you go through.
My mom is there for me, but I do not think she really truly understands. My dad on the otherhand could care less and makes dinners with tomatoes and fruits and all this other stuff I can not have and it gets me so mad. I even put a list of foods that i can not have, foods i can have, and menu options on the refrid. And he yells at me when I dont go to school. My mom tries to explain but I guess he is just a guy. I have printed a big stack of sheets about ic and children and pretty much every topic on ic for my mom to read. I still dont think though she understands how depressed i am or how i really cant sit through school now. My advice is to go onto ic-network or ichelp and print out stuff that you can relate to or that will help you and show your mom. maybe even highlight important parts. It really helped me. And show your mom that you are doing everything you can. I made a bladder void sheet where i write whenever i go to the bathroom and i also made a food diary where i write down everything i eat.
yeah i think i have written alot! haha i hope this helps a little.
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