UnicornLuvr Posted April 1, 2008 Report Share Posted April 1, 2008 Hi there,My name is Danielle. I am 19 yrs old, currently living with my parents in Marblehead, Ohio, after having to drop out of college in December due to my health issues. I am (barely) living without any health insuarance...When I say barely, I mean I am barely living in general... I am very excited to have found this site! Last fall I was diagnosed with POTS and NCS, even though it is likely I have had it my whole life... It is a major relief to FINALLY know what is wrong with me!!! My whole life, I have been "sick" and no one could ever figure out what was wrong... Most of the time everyone thought i was just faking it, or crazy...I am sure many of you have gone through this! While I was away at college last fall i was very sick with a stomach bug. I had to find a doctor, and quick! I am so blessed to have accidentally stumbled upon the doctor who diagnosed me with POTS/NCS!! Of course I had NO IDEA what either was, so it was scary, but mostly just felt like there was hope after all...I look forward to chatting with and getting to know all of you! Quote Link to comment Share on other sites More sharing options...
morgan617 Posted April 2, 2008 Report Share Posted April 2, 2008 Welcome Danielle! Glad you got a good doctor, but sorry you have the illness! I hope you find this site to be helpful and feel very comfortable here! morgan Quote Link to comment Share on other sites More sharing options...
corina Posted April 2, 2008 Report Share Posted April 2, 2008 hi danielle!welcome at the site. you've found yourself a great place to be as there are so many of us (from all over the world) here. there are very many differences between us (which is a good thing: now there's always someone who will know how you mean ) so that i more like to talk about dysautonomia than just pots. anyway: everyone is welcome, so please feel free to ask what you want and take the time to read all the information that is given on this site!!!take care,corina Quote Link to comment Share on other sites More sharing options...
juliegee Posted April 2, 2008 Report Share Posted April 2, 2008 Hi Danielle,Welcome! Your story sounds almost exactly like my son's; he was DXed at 12 y/o. His also presented as major stomach issues, etc. You were lucky indeed to have found a doctor who could put your GI issues together with your POTS/NCS. Out of curiousity, who was your doctor? What specialty? I "bump into" parents all over the country whose children have similiar issues & would love to have another doctor I can recommend who "gets" this stuff. I hope you find relief soon & lots of support here among us.Take care-Julie Quote Link to comment Share on other sites More sharing options...
UnicornLuvr Posted April 2, 2008 Author Report Share Posted April 2, 2008 well, the stomach thing was unrelated, i believe... i just had to find a doc, and she was the one i randomly chose. her name is Dr. Kathy Boehm in Toledo, Ohio. she specializes in adolescent and young adult stuff. especially NCS and a bleeding disorder which i found out that i have... lol! she asks all of her patients a series of ?s from a check list of NCS symptoms, sadly all of which applied to me... but atleast now i know!! Quote Link to comment Share on other sites More sharing options...
jazzyfizzle Posted April 3, 2008 Report Share Posted April 3, 2008 Hi Danielle, I am also in N. Ohio, not quite officially diagnosed yet. I would love to see if there is a N. Ohio support group that we could meet with others in person. Jazzy / Sher Quote Link to comment Share on other sites More sharing options...
UnicornLuvr Posted April 3, 2008 Author Report Share Posted April 3, 2008 Hey Jazzy, that sounds like an awesome idea! keep me posted if you find anything... I will be thinking of ya hopefully u get dx'd...Danielle Quote Link to comment Share on other sites More sharing options...
Ernie Posted April 4, 2008 Report Share Posted April 4, 2008 Hi,Welcome aboard. We have a nice little family. Quote Link to comment Share on other sites More sharing options...
Alizee Posted April 4, 2008 Report Share Posted April 4, 2008 Great to make your acquaintance! I love unicorns too!! Quote Link to comment Share on other sites More sharing options...
Sunfish Posted April 4, 2008 Report Share Posted April 4, 2008 hi danielle - welcome! obviously sorry that you have the need to be here in the first place, but glad you found us considering . and glad that you were one of the lucky few to come upon a diagnosis fairly quickly. i don't know dr. boehm personally but have heard very good things about her over the years & had a home care nurse once who worked in her office. i live in the toledo area myself so am very close to your doctor. there aren't any active support groups in northern ohio (eastern/ cleveland or western/ toledo areas) these days. there was one in toledo for several years but it sort of fizzled out; i actually wasn't living here at the time (was in baltimore, maryland) but attended once when home visiting my parents. when i was living in the cleveland area a few years back i tried to organize meetings there and while there was initially a LOT of interest the attendance was a bit more mixed. we had two meetings - one on either side of the cleveland metro area - and at one meeting we had a worthwhile turnout of around 8 but at the other there was only myself & one other person. i would have probably tried to consolodate & have a group continue to meet every so often but due to continually declining health i actually had to relocate back to toledo such that i wasn't able to help with any cleveland area organization. no one else picked up the reigns so that was the end of that.while there aren't any formal support groups in toledo i've had the pleasure to meet a decent number of people who travel here to see dr. grubb who, if you're not aware, is also located in toledo & is considered to be one of the top autonomic specialists in the country & even world. some of these meetings have been planned & some are just good "luck" of meeting at the doctor's office while waiting. face-to-face support groups often do sound appealing to many and definitely have their advantages but in practice i know that many people on the site who have tried to organize even one-time meetings have been disappointed with the turn out after putting in a good amount of planning. a large part of this may be b/c of people's unpredictable energies/ health. i do know that many people have had great experiences planning to meet with a few people who are close to them geographically (or in relation to doctor appts). i've met more dysautonomia folk now than i could even count in the years since i was diagnosed (conferences & by way of living in several locales & attending some meetings/ conferences) but i still remember the first time i met others who could "get it" and how neat that was so it's definitely a worthwhile venture if you can make it happen in some way, regardless of whether it's any sort of organized group. i now have more than "just" autonomic stuff going on & know that i'm hoping & praying to someday meet one or more people who share some of my current struggles. i wouldn't want to scare you away with the complexity of my health situation so don't know if i'm someone you'd particularly want to meet but i am in toledo so if you'd be interested feel free to send me a PM in regard to when you might be here next for an appointment.but anyway....that's way more of an answer than you were looking for i'm sure. i'm one that doesn't post near as much as i used to but when i do chime in can still ramble on quite readily!!hang in there, melissap.s. jazzy/ sher...what part of northern ohio do you hail from?? Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted April 4, 2008 Report Share Posted April 4, 2008 Hi Danielle, welcome.Sorry you have to deal with the challenges but you are welcome here and hopefully will find some helpful information and people who understand.best regards,tearose Quote Link to comment Share on other sites More sharing options...
UnicornLuvr Posted April 5, 2008 Author Report Share Posted April 5, 2008 I am so glad to be here, with friendly people who understand!! and melissa, i love that you can ramble! Don't lose that!! ...so today has been pretty crappy! but, my days are usually crappy, soooo! i just hope things will get better one day. grrrrrrrrr Quote Link to comment Share on other sites More sharing options...
Rachel Posted April 5, 2008 Report Share Posted April 5, 2008 Welcome, Danielle!I'm glad you found us. I hope you find help, encouragement, and support here.Rachel Quote Link to comment Share on other sites More sharing options...
Tessa Posted April 5, 2008 Report Share Posted April 5, 2008 Hi DanielleSorry about that, but glad that you finally have a dxIt is so hard when you feel sick and you have no idea what?s going on... Take care and keep around. You will find many friends here to share your feelings, experiences, doubts, ...Welcome!Love,Tessa Quote Link to comment Share on other sites More sharing options...
Megan Posted April 7, 2008 Report Share Posted April 7, 2008 Welcome Danielle! I'm 20 and in college in Ohio, though I'm from Indiana. Hope you find some support here.Meg Quote Link to comment Share on other sites More sharing options...
Eillyre Posted April 17, 2008 Report Share Posted April 17, 2008 Welcome, Danielle! Quote Link to comment Share on other sites More sharing options...
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