15 to 30 for 2010 Conference!

At the conference this year, we had a small group of young adults get together and discuss ideas for next year. Unfortunately it was very last minute and there was only a few of us, but I know there are more of you out there! Next year we want to make sure that the young adult age group and good ol' "twenty somethings" have a stronger presence, and get a lot out of the conference with their own opportunities. We talked about having a " young adult track" for the conference, with workshops focuses specifically on what WE want to see and learn about, as well as some social opportunities, specifically for our age groups (not necessarily 15-30, but maybe two different groups).

This is where you come in. WHAT do you want to learn about at the next conference? What would help you get the most out of your life even with health issues? No idea is too big or too small. Let's just get some chatter going about what we'd like to see, so we can really make it happen!
Some ideas that came up in our group were: how to balance finances, nutrition and fitness, transition (college, employment, etc), self advocacy... just to name a few!

Ready and brainstorm!!!
(also feel free to message me, if you have ideas but don't feel like posting to the whole discussion board)

See you in 2010!

By azaleon
Posted July 24, 2009 at 8:13 pm
Report post

Maloreigh, it's Aliza from the conference in St. Petersburg. I'd love to help you with any planning or anything else to get some more solid, planned out stuff for the 18-30s for Oley 2010. Just let me know what I can do! Some ideas that I have are transitioning and going through school with HPEN and chronic medical stuff as well as moving away from one's parents or caregivers while on HPEN with medical stuff. Also, interaction with siblings and peers, friends that may not understand the true medical needs and the stress that comes along with that lack of support. Perhaps also talking about how we interact with our families. I know that when I am at big family functions or family vacations, I feel self conscious all the time because people comment on how healthy (or not) I look, what or if I'm eating, what I'm doing and how I'm doing it, and basically everything that I do. I feel that I'm under a microscope because I'm sick, and especially now that I'm older, and in this age group, because I'm making my own decisions, but not completely, if that makes any sense at all. Basically, I guess that I mean doing something about self acceptance and acceptance of one's diagnosis and not worrying about what family or other people think about what you have to do.
Also, a session on relaxation, pain control, and alternative medicine would be interesting. For example, massage therapy, acupuncture, acupressure, biofeedback, Yoga, Pilates, etc.
Let me know if there is anything that I can do to help you! I LOVED Oley 09, and I can't wait for Oley 2010!

BTW, how are you doing??

Aliza

By Alan_Robinson
Posted July 25, 2009 at 8:21 am
Report post

Maloreigh, As an old adult, I agree with you. I think a specific young adult track would attract people not interested in listening to medical research. If you think of a theme, transitioning form dependence to independence, all the session ideas fall out easily.

Insurance on your own.
Living away from parents
College
Roommates or solo living?
Managing your first full time job
Managing your own medical care

I think you also have to think about potential speakers including some who know nothing about Oley

By Kristin_F
Posted July 26, 2009 at 3:39 pm
Report post

I was unable to make it to the 2009 conference due to constant health issues, and financial problems that come with chronic illnesses, and am unsure if I will be able to get enough money together to make it in 2010, but making it to a conference is a goal of mine.
I am 28yrs. old (so the older end of your age group) but understand difficulties that come with being young and having an illness no one else seems to understand.
I think some good topics to discuss would be:
1) Becoming comfortable with yourself and your medical issues....if you are happy with yourself no matter what others think, it makes it easier to discuss your problems with others and not feel as self conscious.
2) How to deal with dating and marriage with a chronic illness. Also what to expect by having a "normal" partner, when you have health problems, and how to help your significant other understand what is going on with your body, and your special needs. (I find that the hardest people to explain my feelings to are the people I am closest to)
3) How to transition out of a home where you have 24hr. care by parents who love and care for you, and into an independent lifestyle that you have to manage on your own. (Moving out of a parents home is a major thing for any person, but when you also have a chronic illness it's even tougher. It is often easy to slip into a routine of not doing what you are supposed to because it is easier, it makes you seem more "normal", and there is no longer anyone looking over your shoulder telling you what you have to do)

These are just a few things I can think of off the top of my head. If I can figure out how to make it to the 2010 conference I would love to join into a group like this. I often feel so isolated, because where I live the only people on feeding tubes seem to be small children, or the elderly, no one in my age group. This site has really helped because I know I'm not alone.

By Maloreigh
Posted July 26, 2009 at 4:13 pm
Report post

These are all wonderful ideas! Keep em coming. I will keep you all informed of progress and will speak up if we need help planning things! This will be great

By Abiah
Posted August 21, 2009 at 7:36 pm
Report post

I'd love to go, but like everyone else with these issues, I'm pretty much broke. It's expensive to travel as a regular person, but for people like us, it's VERY expensive. So I don't see me being able to go, even though I'd love to with all my heart's wishes.

But I do want to suggest some topics that I know I'd love to learn about/discuss:

1. Making a living while living with chronic health issues that may keep you from working normally. Like, ideas, options, and even programs that may help us either learn a trade that we COULD do while having health issues that can send you into the hospital with zero warning, or find a way to make money that isn't a scam, that would allow us to work from home. I know this is a HUGE problem for me, and I'd love to get some insight on it.

2. Dealing with the loneliness AND boredom we are forced to endure many times. I know that I, and many others here have dealt with periods of time where they were just too weak or sick to leave their bed, let alone their home, and too embarrassed to have friends/family over because of the way we look/have to do when things get bad. That leads to a loneliness and boredom that very few outside of those who've lived it would understand. It would be great to have a group discussion about this; share ideas, make connections between ourselves to have a network of people who offer to be there for the others when things get lonely and bad, things we do to pass the time/keep ourselves busy, and ways to cope when you feel down in the dumps emotionally from the shut-in lifestyle many of us have to endure far too much.

3. Fashion and clothing for people with tubes. How many of us have been in the mall, seen an adorable top or dress, something that fits our style to a T, and when we go to try it on we look in the mirror and to our dismay, our tube sticks out in just horrible ways, that there it's not worth spending money on since it's too noticeable for our tastes? Or how many have had tubes leak on a favorite outfit, leaving a stinky messy stain? I would LOVE to learn of some cool tips on what works and doesn't work in clothing for people with tubes, IVs, PICCs, and so on; like which cuts hide tubes well, or any tips on hiding our tubes under things? Also, what works at getting out those stupid stains all of us have on at least one item in our wardrobe; what types of detergents, or other home tips on clearing things of that awful stench the tubes can leave on things.

4. Learning to advocate for yourself when it comes to medical professionals. This is a huge problem I know I at least have...Getting docs and nurses to listen to my concerns and react to my needs when I'm alone without my mother their to help me. Even though I'm 26, they ignore and treat me horribly when my mom isn't around, and sometimes even when she is. How many of us have been given that look when we yelp in pain that makes us KNOW that they think we're nothing but drug addicts seeking a high.? Or have a nurse in the hospital ignore your call button requests? I find that our age group has even a tougher time than some of the older or younger patients because they assume when you're our age, that you should be perfectly healthy, and if you're not, it's our own fault somehow. I'd love to learn ways to talk to these types of medical people, and what to do when they just won't listen or treat us badly.

I really like all the other ideas posted, especially the one about dating/relationships and self acceptance. I was also thinking along the lines of me writing I just don't have money to travel, and how many people in our age group especially don't have a lot of free income, that maybe we could try and set up some sort of way to fund raise or something official for us to do in our local communities to raise money to go. Maybe a scholarship program if we get some sponsors at a national level. I think this is the BIG reason many in our age group don't go to these events, they're just too poor to afford it. That to me is a real shame that we'd have to miss out on an opportunity like this because our health has yet again robbed us of the ability to do what we want with our own lives.

Abiah

Welcome to Inspire!

Explore topics in this discussion:

6 replies

Add to the discussion

Helpful links from the Oley Foundation

Group leaders

You