College Dorm Life

[PattiL]

Hi,

Chrissy has decided (she thinks) that she wants to stay in a dorm this fall. The college she's going to is about 40 minutes away (in good weather) and everyone knows since mornings are tough, she thought she'd have somewhat of a head start by not having to drive everyday. We've requested through the disabilities office of the college for a single room with A/C and as close to the campus as possible. Oh, and elevator access hoping that she's not on the first floor. Is there anything else we should do? Anything else we should request? Chrissy will have finished her associates degree by the end of summer from our community college so she's a little familiar with college life. The college she will be attending has about 4,500 students (to give you an idea of the campus size). It's a private catholic college, if that should matter with how things are run, I don't know. The school has suggested that we/she go to the first available orientation to get the class times that would accommodate her best. We else do you suggest?

Thanks everyone.

Patti

[steph37822]

oops

[PattiL]

Hi Steph,

How brave of you to keep up your studies at a large school such as OU!!

I agree with you 100% about Chrissy letting her prof's know about her condition, for the most part they've been absolutely wonderful. What she did the past couple of years is just to type out a page about POTS, briefly what happens to her body under certain conditions and what they should be aware of. MOST have been very supportive. Did you dorm with someone or did you have a single. If you did have a roommate, how did you deal with needing quiet, needing the room colder than normal, etc. I'm very surprised OU was so accommodating-being such a large school I would've thought you'd just be another number to them. That's one of the reasons Chrissy choose a smaller school. That, and the distance. I think it will be very reassurring to her and her father and I that she's so close should a medical problem arise. How did you cope when you didn't feel well?

Thanks so much for your input.

Patti

[sunisshining]

Hi Patti,

Tell your daughter that I think she's awesome and brave! I'm a freshman at Stanford. I actually started here when i was not in a major pots hole. But, honestly, people are really understanding. There are always the people who will say "we're all tired" or "you sleep/rest more than anyone i know" but they don't say this because they mean to be insensitive, it's just because they don't know better and if you explain to them, they will understand more. I have suuuuuch great friends and to tell you the truth, I would HATE not being here because then there wouldn't be much to focus on other than feeling ill at times. I mean, there would be, but i think you know what i mean - i would feel out of the loop.

I also think that it is a great way to spread the word about illnesses that the medical world doesn't know much about. i always think - what if, God forbid, something like this happens to one of their kids in the future? then they will remember me and know that not all illnesses have clear-cut answers... and to just keep pushing. Also, the next person they meet with something like this - they'll understand. And really, your daughter will be surprised to learn that most of the people she will meet know of someone who's been in a similar situation (one of my friends had a friend who was undiagnosed with gluten intolerance for 8 yrs, one who was sooo sick the first 7 yrs of his life until the dr.'s decided to try giving him a bone marrow transplant and now he's fine, not close to death!, a friend with ibs...etc, etc).

But what is the best thing EVER, is that my friends know that i don't like to be ill (who does?) and i don't really like to talk about it and i don't want to be defined by it. They know that i like to have energy and laugh and smile and make people happy and have fun. in fact, my friend, who has an essay for her introsem due in under an hour just got back from a class, out of breath, and first thing she stopped in to see how i was doing. As long as you let your friends get to know you and not just your disease they are cool with that and they are really supportive. Some won't understand, but they don't understand most things, and i am glad i am not one of them. But we are still educating them and they don't mean to be insensitive, they just probly have their own issues going on.

but, if your friends see you when you are well and when you are not well, they really do know that something is wrong with you and that it's not some imagined thing. they can just look at you and even if you try to say "oh, i'm feeling better" if you aren't, they pick up on it. And they don't know how to help your symptoms because they don't really know much about the condition (who does) and they wonder why doctors can't help more (they wish the dr.'s could and get frustrated at the doctor with you) but they do know that having them still treat you normally but realizing you are sick is the best medicine ever. I wake up to notes on my white board, people always ask me how i'm doing (and it took me 2 quarters to fess up the whole truth about how i feel - it took hitting a major pots hole to do this, so i'm not saying it's sooo easy!). But once you tell the truth, as long as u don't dwell on it, you get suuuuuuuuuch a great support system. I try telling people discretly tho, b/c then they know i don't want a lot of attn about it, i just want them to know that if i'm not as with-it, it's not cause i'm being anti-social, etc, and they all want to help sooooooooooooooooooo much, but don't dwell on it.

this has gotten too long and i need to use my energy to study!

Whatever the case...the bottom line is that it definitely won't be easy breezy, but the friends you make, the experiences you have, and how well your life can educate other people about these kinds of illnesses, the interesting classes, etc, etc - it all makes the struggles sooooo worth it.

as i like to say (i don't know who said it originally), "the stronger the wind, the stronger the tree."

she will love college! and i think it's AWESOME she decided to go. it can be difficult since college is an environment so focused on functioning, but she just needs to try not to compare herself to people without her condition...and realize that no one is perfect, even if people try to appear that way.

and don't be shocked if she has times where she gets upset with how she's feeling and that she's missing out on stuff. it's natural, happens every once in a while with me when i'm feeling really sick. but not every day is like that! and it's soooooooooo much fun, even if u can't always particupate as much!

hope this helps...i think i meant to say some other things but forgot what i was going to say and started to ramble.

yay for your daughter!

and i think that this is her only chance for college at this age..so this way, there won't be "what if's"

love u lots!

hugs,

sun

[steph37822]

oops

[kare]

I'd suggest you get her a digital recorder so that she can listen to the lectures when she feels the best. Sometimes- especially my 9:00 AM lab and even my 10 AM lecture--- I am "there", but not really "there"...... I will listen to the lecture later and wonder- how did I miss ALL that... (mornings are my worst). I have headphones and walk around campus or lay in bed at nite and listen again to the lectures. Walmart has them for $29. The digital ones hold 6 hours of lecture and I actually have 2 so I can go over lectures before test. -- they are very small and fit in pocket. Also get rechargable batteries and battery charge- so much cheaper in long run!!

[lindaf]

Patti, I am sure Chrissy will do very well. She will meet best friends there and they will be her support system. She has to be honest with her friends so that they know how to help her if she needs it. Most will be very supportive, and Mom and Dad are close by if needed. She should always have food and drinks in her room in case she is not up to going to the cafeteria. Good luck and God Bless. Linda

[cnm1]

Steph

I just read your post to my daughter Rachel, 17 with POTS. She wants to go to OU. We live in NE Ohio. It is very exciting to hear your comments about OU. When did you graduate? Rachel will have finished 60 credits hours of college by the time she finishes HS (PSEOP in OHIO) She has been doing all distance learning classes. We hope she can handle on campus classes by being able a reduced load. She is also looking a small colleges (Juanita mainly). But alot depends on finances, her SAT scores are high enough to guarentee a full scholarship at OU.

Louise

[steph37822]

oops

[Kitsakatsa]

The best thing that helped me in my MBA degree and getting through it with POTS was to have a laptop. Its been tons easier for me to think (and get blood to my brain) when writing a paper if I'm in a recliner instead of a desk with my feet down. Also, if she had to go to a computer lab with all the bad stuff- lines, floro lighting, people, smells etc. that may cause her to sink in a hurry. Hope this helps-

[PattiL]

Thank you all for your replies. They are all very helpful. We were wondering whether a laptop or desktop computer would be more beneficial, good idea about a recliner and laptop--I didn't think of it before. Hopefully John Carroll University will be as accomodating as OU was for you Steph. It should be an interesting journey for Chrissy and I!!!

Patti

[calypso]

I would definitely encourage her to avoid classes before 10 or 11 a.m., and to get yourself in touch with a dean from the college to which she is applying, whether that be liberal arts, or education, or whatever. That dean can communicate to any of her professors if/when she has a problem and can't attend class or if she needs special accommodations.

Good luck,

Amy

[ethansmom]

I just wanted to add that I also think you are doing everything just right! I am glad that your daughter still desires to follow her goals despite her health obstacles. I too was in college (my first year) when I got hit with POTS- I was not living in a dorm but I was sharing an apartment with my boyfriend and we were both going to school and working full time- so there were a lot of challenges, but my school was also accomodating, and I finished my Associate's Degree last year- it took a little longer than normal, but the sense of accomplishment was enormous after all that I had been thorugh. I then found a great university that has an adult online program which I've been working on my Bachelor's degree through (but I've also had a child in the meantime and #2 is on the way, so dorm wasn't an option for us when we were ready to start our undergrad programs!!). There are a lot of options out there, and I hope that she can do really well and have a fun experience. Even if it doesn't work out, there are so many alternatives for her that will help her achieve her education goals. Good luck to your whole family!!!!! College is a really neat experience

[cnm1]

Patti

Actually, we live very close to JCU ( 5 mins) and my neighbor who lives across the street works there. It is a nice college. Make sure to try the restaurant on the corner (Pizzazz) it has great Italian food at a reasonable price.

Some accommodations psoted elsewhere are

No PE

-Elevator pass if needed

-Handicap parking

-Extended test time

-Rest periods and elevate legs when necessary

-Leeway with homework and other deadlines

-Allow classmate or other to share notes or record classes

-Excused absences

-Allowed to have water during class

-Dorm room near classes

-Dorm room on first floor with AC

-Have water supply in room

[PattiL]

Wow!! You guys are great--such wonderful ideas.

Cnm1-how lucky you are to live so close to such a great college! We live not too far from Lake Erie College (we're in the Chardon area), but of course Chrissy didn't want to go there. We're lucky also that we have relatives about 10 minutes from JCU--so should an emergency arise, they could get there a little sooner than us. We'll definetely have to try out Pizzazz--wonder if it's owned by the same people that have a Pizzazz on Rt. 91 in Mayfield? That one's great!

Thanks again everyone for all your ideas, we'll keep you updated!!

Patti

[Sunfish]

hello all -

this is actually my first time posting on this forum (i'll do an intro thread soon) but i used to post on the NDRF forum and i'm far from new to the autonomic craziness. and it seems like this is the perfect thread to jump in on! so much has already been said that's great advice. i had NCS prior to college but it wasn't a big thing; i'd pass out on occassion but day to day was great, a varsity athlete, etc. things reached a different level my frosh year of school and as we didn't know what we were dealing with we never did the proactive/before-the-fact thing with disability services. once my health was more stable i was in decent shape until half way through my senior year when my body totally wacked out again at an entirely different level. i was in and out of the hospital a lot and at no more than a week of classes before i realized that i needed to get myself back to my parents & dr. grubb in ohio (my original doc). optomistic me hoped we'd adjust my meds & i'd be back in maryland soon but of course it wasn't quite that easy. my optimism gets the best of me at times:-) i was determined to graduate though, had already received a job offer (accepted it from the hospital none the less!) that i had interviewed for right before the big crash, etc. so...i didn't ask but rather just made it clear to all that not graduating wasn't an option. my parents helped me get a lap top (DEFINITELY the way to go) and i wrote papers on end from 500 miles away. the dean of students sent a letter to all of my profs but i was already in communication with them via email. and since i'd been there at the beginning of the semester i'd met them all face-to-face and i'd met with them in my attempts to be back at class between hospital stays, so they knew i wasn't messing around. i didn't do any less work than anyone else, just some creativity in terms of more papers, less participation, etc...but...the distance factor was NOT easy family-wise. my college decision was made before my health was such an issue, and i've heard that hopkins has crummy disability services; the size is what allowed me to create my own plan with the dean & the profs when needed. i'm glad to report that i did walk for graduation, coming back just a week prior, and officially graduated a few weeks later after finishing my last paper. and i started that job a month later. not easy, but i did it and don't regret it. i did wacky things to make it through days, such as laying down under my desk at lunch, but for the most part held my own for two and a half years in terms of autonomic stuff with expected minor flare-ups if i caught a cold, etc. (and the minor detail of my having neck surgery...) but slowly but surely i was doing a bit better and even was working out again on a limited basis last summer. it was very encouraging.

lately, though, things have not been so grand. and that's putting it mildly. i won't go into the details now but since november things have been a mess and i've been on leave from work since new years. and all the while i was planning on applying to grad school. though a bit nuts in light of my health i went ahead with the applications, and though i got them in a bit later than i would have otherwise, so far i've gotten in to two of the three and haven't heard from #3 yet. it's still pretty far-reaching to envision myself in school with how i'm doing right now but that's the goal. and i'm heading back to ohio/michigan to be closer to family. my poor mother has made 4 trips to MD since january already this year, my dad will be here for #2 tomorrow, and we're not done yet. so now i'm doing TONS of looking into the disability services for school in the fall. i'm probably going to be at case western, so i'll actually be close to JC...small world, eh? i'm seeing a cleveland-area support group forming in the fall already!! also, my uncle went to JC and 30 years later still is best buds with his friends from there. and i have lots of high school friends who went to OU and loved it.

so...i haven't offered much new per say but i think that there has been a lot said that makes a lot of sense. i would say to really look into things at any school as they are so different from place to place regardless of them having to follow ADA. small vs. large schools have pros & cons b/c even though small can be more personal, large can have more available resources. for instance Univ of Mich has incredible disability programming/support...i was perusing over the weekend and even its websites are great! some schools i've looked at though are great about parking flexibility, some allow options but make you go through a lot more hoops first. you get the idea:-) i'd say that the more questions and info you know before the better. at least that's the approach i'm taking! over the years i've come to realize that my stubbornness isn't always productive & that it's okay - no, better - to adjust a few things in an effort to allow me to function as well as i possibly can. perserverance/determination is good...total stubborness is not...although it can be a fine line that i'm continuously trying to figure out.

as hard as it must be as a parent, doing the college thing is great if possible. and for my fellow "sun" girl at stanford, it sounds like you're doing great which i commend. it's true that we may not be able to do college the "normal" way 100%, but that may not be a bad thing!? wouldn't want to throw out the baby with the bathwater

all the best to everyone...i look forward to getting to know you all now that i've come out of hiding. as you can see i'm not too shy once i get going....

smiles & sunshine,

melissa

[cnm1]

Hi Melissa

Acutally I live in Cleveland Hts and used to live 5 min from CWRU. I have MSN from Case. Small World!!!

Louise