New Apartment, Grad School...

[Sunfish]

greetings all -

in case it isn't evident by my obsessive posting today, i've been playing catch-up while recovering from a trip to cleveland this week. i'm flat on my back after doing more since tuesday than i have in any condensed amount of time since before christmas. i found an apartment that has what i know i need, had meetings that i felt good about with the disability services folk at school, and made it home in one piece. i'm definitely wiped out, but conscious and okay enough to get up & get food, etc. considering how little i've been capable of doing on my own these past months i'm cautiously encouraged. there's still a lot of limitations, and the travels & apartment search highlighted that - steps, heat, hardly any standing, needing to rest/lay down, wheelchair use, etc....you know the deal - but i also know that i couldn't have made the trip at all only a few months back. i'm still scared, but am also feeling more confident in my ambition to give the grad school thing a shot come fall. it's still going to be a wing and a prayer, but i'm have to at least give it a shot. and while i know there's a lot that i have no control over, i'm going to do everything i can do to make things work.

one of the things is not compromising in my apartment search. i know i need to make my living environment as user-friendly as possible. the search was challenging to say the least but i feel pretty good about my new abode. i signed the lease on friday and will be doing the move in two weeks....july 30-31st. i felt like such a brat in looking for what i need & am having to pay a bit more than i'd like, but i know i'll be better off in the end. my place has underground parking (no need to worry about parking, snow shoveling, or super-hot car), reliable elevator access, individually-controlled A/C & heat (lots of places have it controlled by the landlord...not a good idea), laundry on the same floor about ten steps down the hallway, etc. plus some wonderful closet-space & hardwood floors. it is SUCH a relief to know the address i'm moving to rather than just the city!

the trip provided A LOT of opportunities to "spread the word" regarding autonomic issues. i almost felt like i was on an awareness tour! i was expecting to be discussing my health issues to a degree in my meetings with grad school folks - my advisor, the university disability coordiator, the disability liaison for my program, etc. - which proved to be true, and knew it might have need to be brought up if i had any interviews for my field placement - which also came to pass. but i had no idea i'd get to also "spread the word" to people showing me apartments. in looking for an apartment i told folks i had a heart condition - the phrase i use in situations where folks generally don't need or care to know anything more - b/c i didn't want any leasing agent trying to ignore my required amenities thinking they were simply a convenience factor. i was surprised when some of the folks showing me actually asked me more about my "heart condition." i can imagine that this would bother some & perhaps it wasn't something they "should" have been asking, but personally i didn't care one bit and actually relish the opportunity to educate anyone that makes the mistake of asking! obviously not everyone got the "nitty gritty" but between the leasing folks, people at school, & field placement interviews, i probably gave some variety of an autonomic dysfunction explanation to no less than 10 people over the last week. a bit exhausting, but i figure every person out there that has some clue can't hurt, eh? having to tell folks my limitations was tough b/c it made it so real, but like the aparment i know that in the long run i have to do so in order to give the school thing the highest possible chance of working for me. i'm not going to help myself by pretending i can park 5 blocks from the building (all my classes are in one building...VERY good)

one particularly ironic encounter though was the process of my getting to my appointment with the disability services coordinator at the university. for my other appoinments i planned better ahead regarding parking, etc, but made the mistake of thinking there would be parking at the building that housed disability services. WRONG. no parking of any sort to be found. not even close. didn't make one bit of difference that i had my parking tag with me. i eventually parked in a lot that i wasn't really supposed to be in after almost coming to tears with a security guard, and that lot was still way too far away for me in the heat. i had to stop & rest 4 times before i got to the building i was supposed to be at & was so close to hitting the pavement. not a good situation. once i did get there the office confirmed that there really wasn't anything better. isn't this odd for a disability office? oh well....i survived but things never cease to amaze me...if/when i have to get to the office once i'm in school i'll have access to responsive transportation so will probably have to just use that. or else use the wheelchair if the weather is okay. once i got there the meeting was great. the coordinator has health/disability issues herself which encouraged her to go into her field of work much the same as my issues & experiences have contributed to what i want to do.

i'll stop the ramblings for now but just had to share my happenings with folks who i know can "get" this stuff on a much greater level than others. just writing this i am baffled by how i survived the week & by what is coming - the move, entering an aspect of the "real world" again, etc.. exciting & scary at the same time, but i'm ready to give it a shot. and hopefully my body - with some assistance - will follow at least to a degree.

that's all for now...

:-)melissa

[MightyMouse]

Congratulations on such a fruitful week! I'm proud of you for getting help from disability services at your college--I never did and looking back, I probably should have.

You know what, we have the same problem with parking at my university! And, there's nothing near the building that houses the disability office--even crazier, the evelator in that building is often broken...and there are accessible bathrooms on every-other floor, so if you're unfortunate enough to be wheelchair bound, the first trick is getting to your floor if the evelator's brooken again, then the 2nd trick is getting to the loo! There's an adjacent building that has evelators and is attached, but it's like having to roll a city block one way to the elevator, then back the other way to return to your building.

I hope you enjoy your grad school experience. So far, I've had a love/hate relationship with grad school. Mostly I love it...I only hate it when I have too many projects due at the same time, and during the major tests, like my day long comprehensive exams.

Nina

[Sunfish]

thanks

i didn't utilize disability services as an undergrad and, like you, looking back probably should have. but i suppose hindsight is 20/20. this go-around i'm in a more precarious place health-wise as well as being less in a state of denial. i think the fact that i was working on application essays from the hospital helped me realize that making contact with the disability service folks was pretty much a mandate.

and geesh, i truly am baffled about the fact that there are so many inaccessible , or at least negligibly accessible buildings out there. i know changes are expensive, but it just makes me sad knowing how tough it makes things for me & that it is a billion times tougher for some others. gggggggrrrrrrrrrrrrrrr.

i know i'm not going to be able to do everything "normally" school-wise but i'm still super-excited to be heading back to school...and i'll be MUCH closer to my family which was part of the location-decision too, so while they hopefully won't be needed to the degree they have been since the new year in terms of visits, 2 hrs away will still be a huge improvement over 8...

:-)melissa

[pamyla]

Hey Melissa, Congratulations on starting grad school I'm going into my 2nd year and hopefully last year, working on an MA, and like Nina sometimes it's great and sometimes I wish I was done

After hearing you guys talk about the disability offices, I guess I'm somewhat lucky because we have parking out front. However, I still don't understand why all parking passes can be bought on-line except for handicapped permits. They make you stand in line at the parking office Seems they could make that process a little easier.....

If you haven't already, I highly recommend getting a handicapped permit for campus. It has made my life so much easier. (and hopefully your school won't make you stand in line!)

One thing I have found in grad school is that my teacher's are much more understanding than I think they were in undergraduate. I feel like I get treated much more like an adult, and therefore teachers are more willing to extend deadlines and such. Overall, it's been a good experience going back to school. Last year at this time I was worried I wouldn't be able to handle the workload, but I've paced myself and have done fine.

Anyways, good luck with everything Let us know how it goes!

Pam

[Sunfish]

thanks pam

i'm running into the same thing with parking...i'll have to do it at the actual office. but what i was told is that while others can buy their permits online they still have to go wait in line to actually get them at the office. i'm just trying to push for being able to get mine a day or two before orientation so that i won't have to worry about parking that first day so much. i have a regular handicap permit & that with my other documentation qualifies me for preferred lot parking at school but unfortunately my campus has hardly any parking that isn't lot-specific, so even though i should be getting a spot right next to the building where my program is it will do me absolutely no good if i have to get to the bookstore, other campus locales, etc. frustrating but i'll figure it out somehow. perhaps by using responsive transportation that i'm on the list for but still a hassle. i was considering another school that had open disability parking throughout the campus which would have been grand, but oh well...it'll test my creativity i suppose.

it's nice to hear how open your teachers have been. i'm lucky that i had good experiences in undergrad even without going through disability services (the dean of students sent memos at times when i was acutely ill so there was some verification), but i did notice a huge difference between my earlier years & the last semester when i was about to graduate; i was treated much more like an adult then b/c i suppose they knew i wasn't just a nerve-wracked frosh, that i could do work, etc.. so far so good though with folks at my school; i'm planning on speaking with all my profs up front so that if something does occur it won't be an after the fact issue.

thanks for the words of wisdom & encouragement,

:-)melissa

[DancingLight]

hey sunfish!

your apt. sounds like a great find! i hear you on the 'feeling like a brat' thing...but, it's not about being a brat, it's about being realistic about your needs to SURVIVE...and not just survive...you have a right to be COMFORTABLE. i'm an only child and grew up hearing all the only child junk about being selfish and indulged, all of which i have never been able to shake. being sick kinda makes that harder, b/c i have a lot of things that i need and have to be so regimented about food, timing of appts. etc. but, nothing you asked for in your apt. search was unreasonable! i joke about my tempur-pedic adjustable bed being my princess bed b/c people tease me about it being so fancy. but, it is like the only bed i can rest on at all without pain. so, that means a whole lot to me!

anyway, rambling as always. i'm way behind on posts here and don't know when i'm gonna catch up! i'm soooo tired from all of our company. and now, i have started topamax which eveyone calls Dopamax...uh-oh! just what i need, more reasons to be called a 'dumb blonde!'

i love that you were able to 'spread the word' so much. i also like that you just say 'heart condition'. i am like you...i LOVE it if people ask me more questions...i want so much to educate people. you go girl!

as for profs...i wanted to echo what pamyla said. i took a couple of grad school classes after POTS...but just with CFS diagnosis...now, granted i was in the masters of couseling program with a focus on disability...but, still...i had a very, very positive experience. one class was just a general class, and the prof was incredibly, incredibly accommodating. the second class, the prof was amazing also. they worked with me above and beyond the call of duty. i was amazed.

it sounds like disability services has their stuff together where you are going, but they didin't where i was. i found it to be a dead end. both of my parents of profs and they really pushed me to just talk to the profs and work it out b/w them and not even bother with disability servcies. that is what i ended up doing. i was able to take exams in a queit environment, take longer on papers, or whatever i needed. i had to take an incomplete and finish up stuff later, and it wasn't a problem at all. i was so amazed at what the profs did to make the experience work for me. and hopefully, with the field you are in, you will find equally compassionate profs.

goofy about the disability parking! ugh!

as for the whole move, grad school thing, etc...i am glad you posted for some support...as you offer so much support for others...

i think that given your health challenges right now, you are very very brave to give this a go. i really admire your determination and passion. i soooo hope this will work out for you. but, you also have to remember that if it doesn't or if it doesn't go as planned...that that is okay too. it doesn't make you a failure or make you less of a person. the fact that you are even trying this is pretty darn amazing. okay, enough of an ego boost for now.

gonna go take my dopamax and get ready for bed. i can hardly see straight. it's only 7:30. i'm pathetic!

later alligator!

em

[steph37822]

oops

[DancingLight]

OMG steph! I almost went to Wooster for undergrad! One guy from my high school did go there and loved it...

Later Alligator!

Em

[Sunfish]

thanks so much for the added encouragement. i really need it right now as i've crashed majorly since getting back & am super frustrated, never mind a bit anxious seeing that my move is a week from saturday & i'm pretty much down for the count at the moment.

on a better note, i got a phone call on monday from my field advisor to tell me that i got the field placement i really wanted. it's at a community health center & i just had a really good feeling about it with the guy i interviewed with, both in regard to the placement itself & in regard to his response to my health issues (which i had to bring up even sooner than i'd planned in our conversation as he started a long conversation with me standing & i simply couldn't). i know that 5 of us interviewed for the one spot so while i don't know if it was other students' first choice i am still pretty psyched to have gotten it.

em-

thanks for the reassurance about getting what i need apartment-wise. it's stuff that i know but still struggle with, ya know?

and also for your words re: it being okay no matter what happens. even though i did pretty darn well last week i'm starting to wonder since i'm crashing so after-the-fact...so as hard as it is to think about, it's good to be reminded that somehow things will work out regardless...

steph-

thanks for the welcome back to the buckeye state...and hey, if you're up for cleaning, we might be able to work something out. i'm waiting to win the lottery of course, which is oh so likely seeing that i don't play, so you wouldn't get rich, but i'd come up with something!:-) regardless, maybe we'll be able to meet someday since we'll be pretty close....

that's wild about OUs lack of access. at least once i got to it the building at Case was accessible...

i may have said this to you before, but i knew lots of folks at OU while you were there (from high school)...wouldn't surprise me if we have some mutual acquaintences!

thanks again gals,

:-)melissa

[persephone]

God, Melissa, reading your posts it could have been ME talking- I'm on the case about starting grad school in October and have been in touch with the disabilities centre at my college too.

Next week I've got to go up to Oxford in my wheelchair and make sure everything's accessible. This will be particularly amusing- my college at Oxford was built before Columbus went to America!!! It is full of listed buildings. But if I can't access them, they HAVE to change. Alleluia for the disability rights act!

Where are you hoping to go? what will you be studying? Sorry if you've alreaedy said- my concentration is WAY OFF today! I'm going to Oxford (hopefully--dependent on funding) to do Medieval English (beowulf, chaucer etc)

Keep us all posted on your progress

Don't let pots stop you doing anything. POTS rearranged is errr..TOPS? That's what you'll be in grad school, chuck! That's the most useful tihng I can say just now. I know, my mind is a very strange entity

[Sunfish]

persephone -

thanks for your message. i've definitely felt the same reading some of your posts - that i could have written them myself, too:-)

good luck with your wheelchair trip. i'm really lucky in that most all of my courses are housed in one building, along with my department's library, offices, etc. so the toughest part is when i have to get elsewhere, for instance the bookstore, disability office, ID registration, parking office, etc....i may have to be a bit more creative with those things. my other big delimma is some of the where & when of using my wheelchair. some times are going to be clear-cut but others are more vague & i may not know what's best until i'm there, at which case it's sort of too late, ya know? i'm thinking it's going to be weird for folks to see me in a wheelchair some & out some until i get to know them....their problem, not mine, i know, but i still think about those things. for instance there is this dean's reception during orientation that i'm already in a quandry about. i sort of would rather meet people not in the chair but at the same time it would be rotten to go & have it be everyone 100% standing & me having to be an antisocial goof sitting in the corner. and thus i may have just answered my own question. i'm just not over this wheelchair thing yet i suppose even though in theory i'm excited about it letting me do some things that i otherwise wouldn't be able to do. same for my field placement...it's accessible but it's going to be hard to figure out when i need to use my chair b/c i won't always know what i'll be doing for the day ahead of time, i.e. shadowing a doc versus sitting in an office. i may try to ask for a rough outline but it will likely only be possible to a degree...

as for what i'm studying, i'll be getting my masters in social work with my concentration being health/medical social work. a bit different than beowolf but i'm sure we'll still have a lot of things in common venturing through the school terrain come fall. my program starts the end of august.

we'll definitely have to keep tabs on each other!

:-)melissa

[persephone]

I know exactly what you mean with the wheelchair thing--I'm always terrified tha tpeople will think I'm a fake if they see me using it sometimes but not others. I'm dreading Oxford on that front- will they expect me to be on wheels ALL the time instead of just sometimes?

You're right in that it's their problem, not mine, but I always think I must look guilty- I always feel so embarrassed in case people assume I'm just lazy:/

I try only to use wheels when I *reall* have to.

I got a new one today on the NHS- a zipper. It's better than my last one but still not very funky at all:(

[Sunfish]

coolio on the new wheels. i'm waiting for mine that i should have already had by now...the ordering got messed up & then they were going to try to make me pay extra for rush to get it before i move. i don't think so! so...i may be getting it as the moving van pulls out but they've assured me it will be here by next friday. it'd better be!

i am SO conflicted about using the wheelchair though for orientation...once i know people i don't think i'll feel as weird but it's the whole meeting people initially thing, ya know? why do i have to think about it so much????????

:-)melissa

[persephone]

I know, love, I'm exactly the same. I try and do without almost ALWAYS...but last week when I was too ill to stand and had to go to a dance I turned up in my chair. That was ok as it was a disability group dance, but I still didn't feel right doing it.

Maybe I just feel like a fake cos I know I have the use of my legs it's just actually standing that is a problem!

Last week when I was in cardiac care AGAIN after a bad flare up, my consultant asked me to walk from the sofa (where I was sitting) to my wheelchair which he moved away from the room. I stood up and could not take a single step- my eyes went sparkly, my head and chest started pounding and I just slumped.

still, we're better to do stuff in wheelchairs than not do them at all!

[Sunfish]

i've definitely "been there, done that"...

we'll have to just keep reminding each other as needed (about the being better to do stuff in a chair than not at all)

:-)melissa

[cnm1]

Melissa

Welcome to Cleveland!! I live in Cleveland Heights. My MSN is from Case. My daughter (17)has POTs. Is your apt in Cleveland Hts? We used to live on Hampshire off of Coventry. Tommy's on Coventry is a great restaurant. My daughter'sCFS MD in NY has suggested that I get her into Vanderbilt once she turns 18 - he is very excited by their research. Maybe we could get together sometime. We are doing college visists right now.

Louise

[Sunfish]

louise-

thanks for the warm welcome

the big move (eeks...i hate that i have to let others do all the manual labor) is next weekend so it truly will be here before i know it.

i'm excited but pretty overwhelmed at the moment. it'll be great to be on the other side of things.

my apartment is in shaker heights, just north of the square. so it sounds like we'll be pretty close. my mom will love it if i tell her i know a local "mom" no worries though...i won't tell her! it's going to be so much better being at least in the same state as my family as is....2 hours is "nothing" when compared with 8.

talk about a small world, i actually had a yummy banana milkshake from tommy's when i was visiting last week. someone that i needed to meet with to interview for my field placement couldn't meet me during the day but was so nice knowing i was only in town for a few days so offered to meet me in the evening at...you guessed it....tommy's. he lives within walking distance 7 knew i was around that area during my visit so it worked out fine...it's the field placement i ended up really wanting & subsequently getting, which is even better considering i practically had to tell the guy my health issues from the get go. i had planned on waiting a bit longer but we met out front (it was during the street fair) and started talking while standing & it was either tell him i had to sit or end up flat on the ground so i chose the former. thankfully he was cool about it all & not too freaked out b/c i got the placement. but i'll just say that i almost got to test out the sidewalk in front of tommy's

i'm looking forward to exploring the area & would love to meet you & your daughter...maybe even at tommy's?? (as long as it's seated!)

good luck with the college visits, especially in this heat. it seems both ages ago & like yesterday that i was doing the same with my parents...

thanks for saying hi,

:-)melissa

[cnm1]

Melissa

Yes you are very close to us. Actually, David Bell's (the CFS doc in NY) son now lives in Cleveland Hts and is attending Case too!! Another nice restaurant is Yours Truly near Shaker Square. I am trying to interest more local drs in this stuff. TEsting is good locally but followup - pretty traditional (ie not useful). Tommy's would be great - Rachel can't have dairy and loves their Rice Dream milkshakes.

Louise

[Guest Julia59]

Melissa,

I'm proud of you for not only going to Grad school, but also for taking it upon yourself to explain/educate more people on dysautonomia.

If you remember to pace yourself you should be fine. I'm one of those that keeps going until my body gives me a nasty warning to slow down.

Yesterday at my gastric emptying test ----which takes two hours (ugg) I did some educating myself. This was of course at ---you guessed it----The Medical University of Ohio. The radiology technicians did not have a clue what dysautonomia was. The good news was that they were willing to listen---and they were actually interested.

I don't normally just belt out information about dysautonomia unless it comes up---and it did. This time they were asking questions on why I was there for the test, and I told them I had trouble swallowing/digestion. Then I said the docs were not sure if it was the POTS or the spinal issues that would cause my digestion/swallowing problems, or if the two were related.

Then I explained what the acronym for POTS was, and explained the details of dysautonomia, and the various forms of it. We had plenty of time---they were bored, and I was bored---so we passed the time talking about dysautonomia.

We did talk about other stuff also----------

They were really nice about it, and if they thought the whole thing was weird, they never let me know it. Then what do you know----the president of MUO walks right by me. I wanted to jump up and say ---"hi , i'm the one that wrote the letter to you about the nasty neurologist, and then thank him for his response. I didn't have the bearings to do it, and he looked really busy making rounds for something---not sure what, but it was something.

Best of luck to you and your move coming up soon. Your apartment sounds like a really nice place. I love hard wood floors. Now you can find some really cool rugs.

Julie :0)

[Sunfish]

louise -

i'll get in touch once i'm in town & recovered from the move....

julie-

thanks for your encouragement:-) and glad you had some receptive folks during your testing too...i've had SO many opportunities to educate all year...more than i would have preferred b/c most were connected with my being in the hospital (4 times), but it is good to think that there are a few more folks out there "in the know" now...i've even kept in touch with 2 of my nurses who i had for chunks of time & who were really interested in the whole thing...

i hope your testing went okay today...or perhaps more so that the comings & goings went okay in the midst of the heat...

:-)melissa