Sunfish

I don't watch Scrubs, but I did see America's Top Model thanks to the commercials; I'd never seen it before but as soon as I heard that someone fainted, I was super curious. Good to hear that I wasn't the only one watching just for the faint! Of course I wish they'd said more, and I did think to myself that there couldn't be many jobs with more standing - modeling & flight attendant (her former job) - but I do still always get some sort of "rush" when something autonomic is shown in mainstream news, media, etc. We've gotta start somewhere... :-)melissa

hi sun - i know you posted more recently about the lexapro rxn, but i couldn't let your post go unanswered!!! i don't have any grand wisdom to offer, but just wanted to send a hug your way & let you know that i "hear" your frustration. and i totally get (and am sure i'm not the only one) the feeling of things just piling up one after another in terms of diagnoses & the fact that one problem can so easily set another off before we can even bat an eye. so...hang in there. i'm glad you at least figured out that the med was part of the problem. :-)melissa

Thanks to all who sent such friendly welcomes. I'm now "diving in" to posting after being away from my computer over the weekend. I'm looking forward to getting to know you all. smiles & sunshine, melissa

Hello all - After lurking for awhile now I figure it is time to jump in introduce myself. I'm new here but not to the world of dysautonomia, and used to post on the NDRF forum a decent amount. I have a problem with "all or nothing" such that if I'm not up for 200% participation....either because I'm doing well enough to work & have some semblance of a normal life or because I'm doing totally rotten...I tend to not jump in at all. In fact I didn't even realize that DINET had a forum until my body plunged be deep into a POTS hole plus several months ago. The "POTS hole" phraseology is new to me & I love it! (I found it just in time to get a bracelet too...yippee!!) So...I am going to jump in without making myself go nuts with "having" to respond to every post every day. It sounds silly but this is a tough one for me! I need to get myself connected though beyond just reading...I feel a bit like a stalker as I feel that I know many of you pretty well from reading posts the past few months. In particular Emily's struggle with GB surgery resonated with me big time as I did the same about 2 months ago. And then Ernie's rotten (insert other explitives here) hospital experience of late literally brought me to tears as it was earily similar to an experience I had at one of the "best hospitals in the world" two years ago. I'm glad to share with you (Ernie or any others) but will spare you for now. And so much else of what I've read has been good for me too...so thank you all. It's not so much the information as I'm pretty up on research, etc. on my own, but more so just the knowing that others "get it"...I'm continuously hitting myself aside the head for not getting connected with you all sooner before I crashed so badly and needed the support but didn't have it in me to start anew. But I'll stop that pity party as there's no one to blame but myself So...a brief intro: Me the person: I'm 25, live in Maryland after growing up in Ohio. Graduated from Johns Hopkins in 2002 and hoping to go to grad school in the fall. Had been working since graduation. I love reading, writing, and good conversation. I love to cook & eat yummy food. I love animals of all sorts & have a cat who thinks he's half dog/half person who currently serves as my boyfriend, roommate, therapist, bedfellow, best friend, etc, so while I"m allergic he's not going anywhere anytime soon. I'd have a pup too but not legal in my apartment. And can you believe they won't let me keep a horse or a llama either?? Picky, picky. I'm also a water fanatic & a music-livin gal. I ws as always a fish & have spent years on end swimming and coaching. I rowed crew in college too & loved it. In the music world I like ALMOST anything. I play piano & cello & sing & have loved times I've spent on the stage for musical theater over the years. The healthy me loves to run & do triathlons too. I'm heading back to the midwest this summer to be closer to the fam and hopefully embark on the school thing again. Either in Columbus, Cleveland, or Ann Arbor; we shall see. My faith in God is really important to me and I don't know how I'd deal with health frustrations or anything else without that. I'm sure that I'm leaving out something about myself that's absolutely essential, but that's the magic of editing, no? I've never been unable to stay busy or entertained in theory....usually it's just the struggle of the mind being willing, body is weak phenomenon, which brings me to... Me the patient: some problems without pinpointing starting in junior high or so, diagnosed with NCS senior year of high school but after a rough year was on pretty stable grounds (relatively speaking) for several years. Things then reached another level of "fun" my senior year of college(02), diag. with POTS and from there on out it's been more of a lifestyle adaptation by necessity. Had spinal fusion (03) and after that recovery there was at least SOME stability and gradual semblance of normal living from time to time which was encouraging. But then this winter came around and things went nuts. I've been on leave from work entirely since the new year with a month of on and off prior to that. My BP/HR are wackier again but then there's new fun of major GI problems (had some previously but a much lesser degree), GB taken out, a bladder that won't work on it's own, officially diagnosed neuropathy, etc. And of course the dizziness, fatigue and all to accompany it. So much fun I can hardly believe it. I've had three hospital stays since November and lots of testing and am actually heading to Vanderbilt in a few weeks for a two week inpatient study. Right now it's sort of a waiting game where I'm trying to keep enough in me to not have to be back in the hospital again prior to the trip to Tennessee. My poor mother has already been out to Maryland 4 times since Jan and will be heading to Vanderbilt with me too; Dad's getting here tomorrow for the second time. I definitely need to get closer to home for all of our sanity... Yes, believe it or not that's the "short version". Sorry for it's length, but be thankful I didn't really tell it all!! That's waiting for me book someday I suppose... I'm looking forward to chatting with and getting to know you all (instead of just reading about you all!!) but am going to reign my obsessiveness in the best I can. You all are already in my thoughts & prayers on a regular basis so of course that will continue & likely only increase. And I'll apologize from the get go if I overkill on the posts/questions at first; I"ve been storing them up quite a bit these past few monts. And now I'm going to fall asleep on my computer screen if I don't sign off, so you all have been spared additional ramblings (for now!) G'night all & sleep tight. Thanks already for having me, melissa

emily & others - i'm new on here, although not to autonomic craziness land, and just wanted to say that i can TOTALLY relate. i had my GB out just after you did...it was right about then that i found that discussion boards on here...go figure that i'd bene to the main DINET site multiple times but not realized there was a forum??!! after holding my own, relatively speaking, for awhile, my system totally wacked out again this winter and when i first logged on and read posts of your post-surgery trials i was both sorry but also comforted to see that it wasn't only me who didn't go so hot post-surgery. sparing the details, my body totally flipped out post-surgery and it's still been quite the long road that is moving slower than i'd like. plus, while my GB too needed to go, there are other issues that didn't resolve as much as we'd hoped post-surgery. my biggest reason for not posting the past few months is a lot of what you were mentioning...my being afraid that i won't be able to "keep up" at all as i like to do so...i'm so much of an "all or nothing" gal by nature. and then if i'm honest i've also been beating myself up a bit about not staying as involved in the dysautonomia world always so that i would have had more support when - pardon the expression - the **** hit the fan this year. i hate the idea of my showing up only when i'm in a bad place... so thanks. your post made me realize that i need to get over myself and jump in. and just do what i can with that, trying to scrap my compulsion to read & respond to every single thing. the funny thing is that no one knows me at all but i feel like i know everyone already quite well as i've been reading semi-regularly recently! hang in there & keep on keepin on... melissa

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