Dorm, CF. Roomie

[gretzky711]

So I've decided to live in the dorms and I'm gonna have a roommate. I just wanna know how some of you dealt with your college experience in having a roomie. Unfortunately CF gives me gas and I'm good about adding flavor to the air in the bathroom, but sometimes it sleeps. The worst is when I sleep, I end up hot boxing the room. I'm pretty sure my roomie is gonna be dead from the toxic fumes, how do I break it to him gently. Also, the door is usually open so people can come and go as they please and I'm really nervous about doing my treatments--any suggestions? Also, did anyone's roommate try to steal their prescriptions. I know it's weird, but I've heard of kids doing that with inhalers and stuff. I'm on TOBI, pulmozyme, the vest, and albuterol.

 

[anonymous]

Three words... Disability Support Services.

When I went to school, I was able to get my own room. You have a right to privacy and should not be forced to worry about these issues. Every accredited university has a DSS and they will accomodate you.

Whether or not you believe that CF is a disability is irrelevant. DSS does not care whether you are disabled with CF and your University (as well as you future dorm roomie) would really prefer that you have your own room.

It is important that you work now before the semester starts to get these accomodations in order.

Anyway, its obviously up to you... If you choose not to use DSS, you may end up finding that your roomate will ask for different accomadations.

Best of luck.

 

[anonymous]

I completely agree. I have gotten to the point, that even if I don't think that I am disabled, many institutions conside Cf to follow in the catagory. I would take advantage of it. You have a lot of responsibily, and it's hard enough just doing that let alone worrying about others. It takes time to be open with people about even some of the basics. Trust is huge. IF you could, get your own room until you may get to a point where you make a really great friend and you guys decide to room together.

Tessa 27 w/cf

 

[anonymous]

This is just a suggestion, but I would get your own room!!! When I went to college from 1990-1994 I had my own room in the dorms and then my own room in my sorority house. Do not fool around with dealing with your roomates schedule. You need your sleep, privacy, do not want to catch a cold, etc. Having my own room was a major plus, I liked it and so did my boyfriend at the time, my bad! But, seriously, you do not want to have to catch any colds and deal with being sick, you have to do your therapies and do them the correct and thorough way; so I would not even try to deal with a roomate. What if the roomate is up all hours, your dorm is grand central station etc.

Use the disability services to your advantage so you can be healthy and enjoy college life. I even went as far as getting a handicapp sticker to park my car. The parking lots for students were so far away from the campus that is literally defeated the purpose of drving instead of walking in bad weather. So, I did get a temp handicapp sticker and was able to park in the lots right smack on campus within a few steps to my classes. It was a great help to me and even my friends enjoyed the perk!

Good luck and have fun!!!!!!!!! But your health is #1 and you will not be able to enjoy let alone get thru school if your sick, worried about treatments and doing them half asssed cause your afraid someone might come barging into your dorm and you for sure do not want to be around a sick roomate!

Use your best judgement, that was just my experience and suggestions!

Jennifer 33yrs old with CF

 

[gretzky711]

So I looked it up and found that this is a possibility with a letter form my doctor. I have to wait till tuesday because monday is a holiday, but did the Disability support services hastlye any of you other than paperwork? Anything I should know or mention when talking to DSS. I'm so glad you mentioned that because I would have died of worrying sick about that stuff.

Thanks!

Dave

 

[anonymous]

I just finished up my freshman year at The College of New Jersey. The Office of Differing Abilities went above and beyond the call to accomodate me according to the wishes of both me and my doctor. I was put in a two room, two person suite in a freshmen dorm. They installed an AC unit in the room for me. I had my own room, and my suitemate, who was the floor RA, had his own room. We shared a bathroom. I really feel like getting your own room is the way to go for all of the reasons everyone else listed. I don't think anyone mentioned coughing through the night though. I cough a bit in my sleep and never wanted to subject a roommate to that all night long.

 

[gretzky711]

Thank you all so much for your support and suggestions. I was so worried about being outed by my roomie. I'll let ya know how it goes.


Dave

 

[anonymous]

I don't have CF, my 4 year old son does. I have Crohn's disease and faced some of the same issues in college. I had to put a tube down my nose every evening for extra nutrition, among other issues. My college was great about making things easier. I had my own room on the first floor, I was right next to the bathroom, and was given a little more flexibility on my school work. I don't recall having to fill out any paperwork, but a larger university may require documentation and Dr. notes. I was very worried about feeling isolated from other students, but it wasn't a problem at all. College is a great experience and you should enjoy it---not be stressed about it.
Good Luck!

 

[gretzky711]

What specifically is Chron's disease. My doctor described it to me as CF of the stomach. He said it's very hard to have it because multiple things have to be inherited in the gene mutations.

Dave

 

[anonymous]

Crohn's disease involves inflammation and ulcerations in the digestive tract. Some of the symptoms are abdominal pain, bloody stools, diarrhea, malabsorbtion and many more. I was diagnosed when I was ten, I had dropped down to 45 pounds and was very close to death. Most of my inflammation was in my terminal illeum (where the small and large intestine meet); during severe flare-ups I would have up to 20 or 30 ulcers in my mouth. i was given high doses of Prednisone and immunosuppressants, they worked wonders and I gained almost 20 pounds in the first month. The Prednisone side-effects were terrible!
I have had a large portion of my small intestine removed, my gallbladder removed, several bouts of pancreatitis, and have even been on enzymes to give my pancreas a "rest". I am in remission and have been ever since my son was born, thankfully. Researchers are still not sure how or what genes cause it, but believe a combination of genetics and environmental factors are involved. It is more common than CF, but I can't remember the statistics.
I was very self-conscious about the dorm bathroom situation, but after a few weeks nobody cares. Everybodies poop smells bad and you can always rely on the "courtesy flush" or blame it on someone else. We were actually more freaked out by the crazy janitor who go into the far bathroom stall and sleep---I kid you not!