Thank God For the Oley Foundation!!

• By daviandsteve
• Reply 898137
• May 27, 2010 at 10:41 am
• Report post

To answer this would take many paragraphs, and I have to leave for a doctor appointment soon. So I will be brief:

The newsletter. Long before the internet, I received my first issue. It was only two pages long then, but it was incredible to know there were OTHER PEOPLE on TPN!

The kind, caring staff. They take a personal interest in each and every one of us. For Joan, Roz, Lisa, and Cathy, their work with Oley is much more than a job.

Gotta run! I'll add to this list later.

Davi

• By MarieTwinTubes
• Reply 898158
• May 27, 2010 at 10:52 am
• Report post

Like a lot of us, I found Oley when I was desperate for information after being sent home from the hospital with no informaiton about how to manage this new thing hanging out of my body. I devoured the Tube Tips. Yes, the staff is so available and caring. They reach out instead of waiting for us to get it all figured out. I've also had some wonderful experience with the Equipment Exchange.

I agree with cheneyfox. Thank God for the Oley Foundation.

Cheers for life and breath! Marie

• By bettemarie
• Reply 903601
• May 31, 2010 at 12:40 pm
• Report post

What an awesome topic!

Oley has helped me in so many ways, all along my journey with nutrition support (TPN).

Here are a few of the most influential ways Oley touched my life:

~Oley changed my life!

~Oley inspired me to see my TPN differently . Instead of hating being connected, and thinking I could no longer have the life I had before. I learned through Oley and the support of my family: to see that my TPN and IV's enable me to be me and to do the things I enjoy, want to do , and need to do.

~Oley showed me the possibility of being independent, going to college, traveling, working full time, living on my own and supporting myself, having a family when ready, and most importantly I could enjoy life while on being connected to an IV around the clock. Seeing the possibility opened up the world to me!

~Oley has helped me during all the various phases one experiences through life and over the years with a chronic medical condition. As life progresses on, the issues and concerns change, plus as the medical condition has it's ups and downs the issues and experiences could cycle around . . . and with Oley there's someone to talk with who has been there and done that and/or who could just offer support!

Smiles,
Bette

• By daviandsteve
• Reply 904086
• May 31, 2010 at 7:34 pm
• Report post

Well put, Bette!

Here are some more of my thoughts on why I love Oley:

Several times over the last 27 years, I have had situations where the ability to speak with others who'd "been there" made a big difference. When my doctor recommended a Port-a-Cath as a replacement for my Hickman catheter, I had many questions and fears; most importantly, I wondered how could I possibly learn to stick myself?! Through Oley I learned of three consumers with ports who were willing to talk to me about their experiences. I called them, and learned that sticking yourself is no big deal; furthermore, they were able to swim and bathe without worrying about infection. Being able to talk to others with ports helped me make a decision that I have been very happy with. Another time, I was mentoring a young woman who had just been told she would never eat again. She was devastated! Since I had no long term experience with being NPO, I again called the Oley office. I spoke with several Oley members, and passed along some of the tips they had given me - such as "chewing and spitting" - to my young friend. A few days later, she called me, laughing, and said "I'm sitting here chewin' and spittin'!"

The articles in the newsletter are in-depth and very helpful. Most newsletter articles just skim the surface, but not the ones in the "LifeLine Letter". These are full of useful information, such as how to deal with insurance companies, what to eat/avoid when you have SBS, and, most recently, how to manage dry mouth symptoms.

Oley conferences are incredible! Expert dietitians, RN's, pharmacists, physicians and others speak on a variety of relevant subjects. And where else do you see children running around, laughing, with PN/EN packs on their backs; here is a place where they can have fun and feel normal! The conference is a great place to meet fellow consumers and swap "war stories".

Just a reminder for those who don't realize it: this forum is great, but there is a lot more to Oley than this site! Check out www.oley.org for more information.

Davi