Hi everyone. My name is Danielle and I'm 20 years old. I've always had a normal, healthy, active life until about five months ago when I started experiencing my first bout of what I know now is gastroparesis. It has been extremely rough, lived with an ND tube for six weeks, and it got so bad that I had to have a GJ tube surgically placed two weeks ago. I am hardly able to keep down anything orally and honestly, my whole world has been turned upside down.
I just recently heard about the Oley Foundation and the annual conference. I'm interested in attending, but I live in Ohio so it would be a bit of a trip, but I could manage if I really thought it would be of some benefit. I would love to meet some people who I can relate to and that have been through all of this as well, but the thing is, I'm an extremely shy, introverted person and now that all of this has happened, my social anxiety, especially around people I don't know, has skyrocketed. My family would accompany me on the trip, but I just want to make sure before I make the reservations and spend the money, is it worth it? Would it be worth it to someone like me and benefit me? I'm worried that my social anxiety might prevent me from meeting new people, and it'll be a wasted trip. Can anyone share their past conference experiences, especially their first one? Or does anyone have any advice or comforting words to help make me make my decision to go? And it might even make things easier if I met some of you online before I made the trip down there, not knowing absolutely anyone. I just hope someone out there can help me out a bit. Thanks! :-)
~Danielle, Ohio
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Oley Conference- Worth It?
- By underwoodd007765
- Posted May 17, 2009 at 12:54 pm · 10 replies
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- By margamouse
- Posted May 17, 2009 at 2:32 pm
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Danielle,
I have never been to a conference as I've just recently found this site, too.
I do know that everyone I've met on this site has been wonderful!! They will answer ANY type of question you may have and never judge you for any fear or anger, etc.
I too am quite shy but no one here has made me feel like I'm asking dumb questions, or I'm an idiot because of what I'm feeling on any given day. Their support will help you get through this without feeling like you're nothing but a burden to those you love, like just because you have to deal with this disease you're not worth knowing or spending time with. Please, if you can afford it and can manage to get there, go to the conference and don't feel you can't talk to anyone and everyone there. THey are truly nice people!!
best of luck
margaret
- By Zacolton
- Posted May 17, 2009 at 3:43 pm
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The conference is one of the of the things I looks forward to all year round. The people are amazing, the information is extremely beneficial, and most important, you can feel normal again for a week because everyone there has scars and tubes like you and have been through many similar experiences. Its really the one time of year where I feel completely relaxed. It is not something I would ever miss.
- By Jameson
- Posted May 17, 2009 at 6:16 pm
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I would definitely recommend that you come if at all possible. I've met some great people, both young and old, and who can all offer some sort of advice or wisdom. Like Zach said, you get to feel "normal" the whole time you're there and don't have to worry about feeling like an outcast or anything. This will be my third conference and it's something I look forward to all year. I guarantee you you'll learn new things, such as new techniques and ways to better care for yourself, as well as simple day to day tips for living a more fulfilling life. It can be a little intimidating at first because everyone there is like a big family, but I can promise you that everyone will make you feel welcomed and at the end of it, you will be a part of the Oley family and will make some great friends!
- By underwoodd007765
- Posted May 17, 2009 at 7:10 pm
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Thanks so much for the replies everyone (and I look forward to reading more)! Now I'm definitely leaning towards taking the trip and going to the conference...even my mom thinks it would be a good idea if I went (she's a nurse and the one taking care of me the majority of the time, so she knows she'd benefit from it as well). :-)
~Danielle, Ohio
- By oleyfriends
- Posted May 18, 2009 at 10:02 am
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Danielle,
Please don't hesitate to call the Oley office (800-776-OLEY) if you have any questions about the conference, or getting there.
Conference information is posted at http://www.oley.org/annualconf.html
Travel tips are posted at http://www.oley.org/traveltips.html
Stories from other people who've attended the Oley Conference:
http://www.oley.org/Inspirational_conferenc.html
When you come to registration Monday night, ask for myself, or another member of the Oley staff. I/We will be happy to introduce you to others right away. It is a very warm and welcoming crowd.
Roslyn Dahl
Oley Staff Member
(800) 776-OLEY
dahlr@mail.amc.edu
- By Sanford
- Posted May 18, 2009 at 3:50 pm
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Hi, Danielle....
YESYESYES, it's worth it. I went to my first conference 3 weeks after I got my first tube. I was still in shock, I think, and seeing people who'd been coping with them for so long was an amazing boost. This year will be my 5th straight conference. And it doesn't hurt that it's in Florida and on the beach. Or that it's so near DIsney World (where my family and I are going afterward).
- By joannenj
- Posted May 18, 2009 at 8:25 pm
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my first conference was in June of 2007. At that time i was on TPN, and having a lot of problems My husband and I made the trip and it was an experience i will never forget, My whole life chnaged after that conference. I was overwhelmed with the knowledge i obtained and to see all the people who are "YOU" You will see that you are not alone with the fears, doubts, depression you may be feeling......I was sitting at a table during lunch and a woman listened to my story. She asked me some questions, and gave me a name of a Physician to see....I did go for an opinion, and the august after the conference i had my first j-tube and a whole new life........It is a life experience I strongly recommend especially for a young adult.....Hope to see you there....Joanne
- By LizAA
- Posted May 22, 2009 at 10:33 am
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I would encourage you to go if you are able to. Being around other people who are going through the same changes and struggles can really help and you'll also get a lot of feedback on how to handle problems with tubes, or other challenges.
Liz
- By Zacolton
- Posted June 12, 2009 at 3:32 am
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Look, the point is this. The Oley conference provides a wealth of information for managing your disease and you develop many useful contacts, but that isn't what makes it so great. Its the connections you make with other people you meet with similar problems. You feel like you belong with these people, and most importantly, you don't feel so alone. The Oley conferences each year are one thing that keeps me going. Short of a serious hospitalization, nothing can keep me from going there. So yes, go, definetely go!
- By underwoodd007765
- Posted June 12, 2009 at 12:36 pm
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Thanks everyone! We've made the reservations and plans to go, so as long as my health remains at least semi-stable until then, you'll see me there! I'm so excited, and hope to meet you all! :-)
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