Intro

[Sunfish]

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

[DSM3KIDZ]

I'm about to pass out for the night but I just wanted to welcome you to the site and I'm glad that you decided to post. Like I've told the others I am new to this site and POTS so i don't have all the info on it yet. But I do know I have found alot of support and answers to my questions which has helped me out tremendously.

I look forward to getting to know you have a good night!

Dayna

[funnyfrog]

Hi Melissa - Welcome to the forum - I would love to hear about your experience at Vanderbilt once you finish after your 2 week inpatient visit there - I emailed Dr. Robertson last November about something and even though he was on vacation, he answered my email from across the world, so he is a very dedicated researcher/Dr. and I would like to know about your experiences there when you are done. I hope you get better or atleast more functionable from this disorder. I am usually up at strange hours, I am one of the POTS insomniacs on this forum and have adrenaline now, but I am tired all day, get about 12 hours sleep each night plus atleast 1 nap and still am always sleepy, except for in the middle of the night like right now, go figure .Nice meeting you. Good night! Beth

[Ernie]

Hi Melissa,

Welcome to our nice family.

It is interesting to real about your life. Helps to know you better.

I went to Vanderbilt a year ago. Do you know what protocol you will be doing? I had difficulty understanding what they were telling me because they have a strong accent. (The opposite was true for them!) It took me a few days to figure it out but sometimes I had them repeat.

Ernie

[geneva]

Hi Melissa and welcome to the neighborhood. Don't worry about the times you are not up to posting....it is a very understanding group here, but do know once we get to know you, we worry if you disappear for long periods!!

It sounds like you have accomplished a great deal since becoming ill and I applaud you being able to complete your graduation. I know that must have been hard work made even more difficult with your health challenges. What do you plan to get your graduate degree in beginning this fall?

Sounds like a good idea to move closer to family. Having a nearby support system can really make the difference in getting through the rough periods and I know your family will be more at ease. It is wonderful they are so supportive and willing and able to jump on the plane and fly out to help you.

I too will be interested in hearing how your visit to Vanderbilt goes. Hope they can find something that can help you.

It is nice to get to know you and again, welcome!!

[morgan617]

Welcome Melissa! Don't worry about lurking and not posting, but as stated above, we do get a little worried when we don't hear from our friends for awhile. Sounds like you've had a chance to taste some life and that's great! You will probably be much more comfortable near your folks. I applied to Vanderbilt and talked to DR. Robertson personally, but when I got the paperwork, they denied me. So I am very interested in hearing what they have to say about you. Hope you find this site supportive and helpful, if not knoweledge wise, at least supportive wise. Pardon the spelling and grammer, grand canyon echo I'm sure, morgan

[calypso]

Just wanted to say welcome, Melissa. Vanderbilt is a great research center and if you're going to get answers, they will give them to you.

Having this disorder as you're embarking on a career is never easy. Many of us are stricken with POTS when we're starting or in college, following childbirth, following a virus ... at times that are already stressful. I hope that you improve since you've had GB surgery.

Amy

[DancingLight]

welcome, welcome, welcome 'sunfish'!!! (love that name!)

i cannot believe how similar we are. i was also so touched that you had followed so many stories here...and that mine actually helped you! honestly, one of the things i get so much joy from is this site...if i can help someone even a little bit or make someone feel like they are not alone, it makes me so happy! it's no fun doing this road alone, and no one should have to do it alone! so, thanks for saying those words, i needed them.

we are alike in so many other ways it's a bit crazy...i read your post about yourself, your interests, etc. and smiled so much.

i'm sorry you've had a hard time post-surgery too...not at all whay you expected, huh? me neither! it's just going sooooo slowly, i can't stand it!

geneva and morgan are right...check in a little bit and say hi when you can so we don't worry too much, but otherwise...don't stress about posting 'enough' (when i figure out how to not stress about posting and worry about everyone, i'll let you know, k? i'm an all or nothing girl too. it's just about killing me to not be able to post a zillion times a day, especially when someone needs a little extra love that day! or when i actually have a clue about the subject!)i try to 'pick' a topic a day to at least say howdy, but i obsess about which one sometimes b/c i love everyone here so much i don't want anyone to think i'm not reading their story too! ridiculous really.)

i do want to hear your hospital nightmare (!) and more about you...i look forward to your posts and getting to know your story more.

do, dive in and don't worry about your first post being when you are in the potshole. we understand. i did the same thing...lurked and lurked forever and then just finally 'took the plunge'. you'll find so much support here, it's remarkable. warms my heart every day.

well, ernie's teaching me brevity, but i haven't quite gotten the hang of it yet.

i can't believe we are both post-GB surgery at the same time. it's kinda comforting to know you're out there too! steph is also post-surgery right now and she's had it rough too!

goodnight!

later alligator!

emily

[sunisshining]

welcome melissa!

sorry you've been so sick. my issues started in middle school too! we're like twins...well not really..you have been thru a lot more than me, it sounds like that's for sure.

i'm really sorry u've had to go thru this.

yeah, don't worry about posting all the time. i am a postaholic while i'm well enoiugh to type because i want to answer every post cause i want to help others and everyone has to hear my complaints! but no worries. if u rn't up to posting, u can always just send one of us a personal message letting us know you're okay/alive but just resting! but only if you'd have time and would be gone like for an eternity.

i'm so glad you've joined!!! yay!

i'm sending prayers that u can stay out of the hospital untilt he 2 week stya and i pray that that will be helpful and not too...hospital-y.

feel better.

hugs, prayers,love,

sun

[Sunfish]

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