urrrrrrgh!!!!

[Alisha]

Hello girls....well I had to drop out of college when I was diagnosed, until now because my IC is very severe and I usually can't walk but from my bed to the bathroom. I am really frustrated because I want to go to school and get some sort of degree so if and when I do get better, I will have a degree to find a good job. How many of you have IC and still go to school? I wanted to know if there is any kind of disability privelages you get, and how you manage IC and sitting through classes. I am also ****** because I live in a college town and never leave the house to go anywhere. Do any of you go out on the weekends? I am too afraid to go anywhere because I know I will get myself more depressed watching everyone dance and drink, while I watch in pain. These are just a few concerns right now, and it would help me out if you could let me know how you all are dealing with this.

Hugs,
Alisha

[liisa]

Alisha,

I'm stilly trying to go to school, although as you know, it isn't going too well. I have two main problems, I can't sit through a class (I can keep getting up or concentrate on not going lol) and my cognitive function has gone down 'cause I dont' sleep more than a half hour at a time... no rem sleep

The centre for students with disabilities is helping me out... even though technically they're not responsible for helping me (master's not bachelor's). I think there are several things they can do, but for me I need advocacy the most right now, someone in my corner to help me fight.

As for going out???????? I have no social life... I just moved here last September and never really made any friends because I didn't go anywhere with them - it was hard and still is... aaah, the thought of going out...

I like your attitude though "When I get better...." I too will get "better", I keep hearing that "us young ones" have a better chance at finding "remission" - now there's a sweet thought.

The worst thing about school is that people look at you funny - always getting up. I did find an aquafit class for people with illnesses - they don't mind at all that I get out of the pool several times in an hour

I hope things improve for you Alisha - this is a real sh***y thing to have - but when you're at the college age, it's a time of fun and new friends, something that just doesn't happen for a lot of us...

Hugs
Liisa
[email protected]

[Meghan]

I know how you are feeling. Last year I had to drop out of college. This year I was able to go--so happy. I have disability services through my school--notetakers, alternative testing locations, can leave at any time, excused absences(college has manadatory attendence). I go to a small, private college in KC, MO. They have given me as much accomdiation as possible. I would love to talk more.
My email is [email protected]
--my mom caused my computer to crash, so I do not have email back yet--

[Amanda]

I have pretty severe interstitial cystitis as well as fibromyalgia. Right now, I am in high school and being home schooled. I am very behind because of three surgeries in three months, so I am going to do most of my work in the summer. I had a permanent InterStim implant on Thursday and I am hoping this will enable me to go back and to later attend college.

I hope you can find some relief, and get back to your lives--- you are all in my thoughts and prayers.

Amanda
([email protected])

[moonstar00]

Alisha,
I am so sorry to hear that you had to drop out of college. I just finished my freshman year, and I have to admit that I was pretty surprised that I survived. Disability services has been pretty good, but I attend a large university, so they are understandably very busy. All of my professors and TA's get a letter at the beginning of the semester stating that I need to leave class frequently and need exam accomodations, and all of that was pretty easy to take care of. I am, however, having problems getting housing. I also have fibromyalgia, and need on-campus housing (with a bathroom, of course!), but my school ran out of housing, so there are 2000 people on a waiting list, and being registered for disability for some reason isn't pushing me to the top of the list.

As for my social life, I amazingly still do have one, sort of. I go out most weekends, when I feel like I can move. Of course, drinking is out of the question, but I still have fun hanging out with my friends and making sure they don't get into any trouble.

Good luck,
Jennifer
[email protected]

[Alisha]

I wanted to thank you for your restponses. I feel so good inside knowing I have people to listen to me and help me out because my boyfriend really doesn't get it and I hate always complaining to him I truly hope that I will get my symptoms under control so I can go back to school. I hope to one day get my RN so I can work in a Uro office and have the priveledge of helping out other IC patients. Lord knows we need more people in the offices who know more about IC. Hope everything is going well with all of you, and thanks for the e-mail addresses....I will e-mail you all soon.

Hugs,
Alisha
[email protected]

[ldwall]

Well I have good news, you CAN get a degree without having to leave your home, depending on what you want your degree in. I do all of my degree work at home, I only have to leave home to take exams, but there are some colleges that only make you do that once a term. You can find these colleges by looking on the web, but the ones I recommend are University of Maryland and Central Michigan University since I have experience with them. These schools are acredited, funded by Title IV funds from the government (student aid) and the degrees are from the colleges and are fully accepted anywhere. Please take some time and look into it. It will at least keep you busy while you are too sick to move. I wish you the best, Lisa

[Alexa]

Hi Alisha! When I got diagnosed with IC about 4 years ago, I had to drop out of university too for a while. I can understand how you feel, it's so frustrating to have your life basically controlled by your bladder! But....when I was feeling a bit better, I went back to university and actually finished my B.A.! ...so it is possible, and I'm sure you'll be able to do it!!! At my university, there is an organization called the Disability Resource Centre, and they were amazing. They let me take all my exams at an alternate location (right beside a bathroom!), and I had a notetaker to help me if I was in a huge flare and couldn't get out of bed. I'm sure there's a similar organization at your college (maybe under a different name). Definitely check them out and see what resources they can offer you. The resources they offer you won't give you an advantage over other students, but because you're studying with a disadvantage because of your IC, they try to accomodate you so that you can preform on the same level as the other students.
Just ask me if you have any more questions about the Disability Resource Centre, or anything! Take care,
Alexa