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Tiffany Dodd

Wondering what an Oley conference is like? Tiffany, a new Oley Ambassador, wrote this blog post about the 2013 Oley conference, where she felt she could be herself (May 2015, www.tiffadpositivity.blogspot.com, adapted with permission).

 

 Tiffany with the stuffed dog she got at an Oley Auction

            In 2013, Javier and I went to Cape Cod on a “vacation” to a medical conference put on by the Oley Foundation. I was really hesitant at first because “medical conference” and “vacation” in my books did not correlate well. But it turned out to be one of the best decisions we have made. I could be me. I could walk around and not have to be so focused on whether any of my “problems” would occur. I did not have to act different to fit in. I walked around in my pajamas, my mask and my gloves, not feeling like I stuck out. I didn’t have to be self-conscious that one of my tubes may peek out. And I spent less time worrying about whether or not I was being stared at or if one of my tubes leaked or whether that smell was coming from me. Being me and leaving my insecurities on the back burner allowed me the time and confidence to make connections and get the most out of the conference.

 

               We saw people with IV fluids hanging on hangers and people with backpacks with lines showing. There were people of all ages and from all over the United States, and even abroad. For some, like us, it was the first conference and others had been to multiple Oley events.

 

               Because we did not find out about Oley until a short time before the conference, we were not able to stay at the hotel where the conference was taking place. There were a lot of times when we wished we could jump on an elevator, go to our room to deal with a problem, and come right back. That was not possible, but we made it work.

 

               Once we checked in to the conference, we collected our name tags, t-shirts, and bags. Everyone could put color-coded stickers on their name tags. Each one stood for something, like care taker or loved one, HEN or HPN patient, and so on. It was good, because you could see the sticker and know upon approaching where they fit into the dynamic. At check-in we got the itinerary. I was exhausted, so we decided to skip the welcome event. I’m pretty sure we went back to the hotel and passed out. When we saw the event posted on the Oley website this year [2015], we knew we should act promptly. I am happy that we do have a room at the hotel where the conference will be [in 2015], and we cannot wait.

 

               Everybody learns in different ways, and that is one of the reasons I found this conference to be successful. In the mornings they had a little continental breakfast outside the conference room and then everybody came together for the “main session.” There was one each morning for two days, and each had multiple speakers. I have a hard time focusing, and sitting in the same spot for a long time causes a great deal of pain. However, I know that seminar-like learning is the best way of learning for others. After the main session there was a break, during which lunch was served and the exhibit hall was open.

 

               In the afternoon, you had a choice of which “breakout sessions” you wanted to attend. Some of the topics were caring for your tubes, nutrition, clinical trials, swimming and bathing with catheters, and dating. The groups were much smaller than the morning sessions and very interactive. I found out that other people had a lot of the same questions I had. For example, I wear pajama pants most of the time. Due to my venting G-tube, I cannot wear pants that hug close to my skin. I also tend to wear tops that are dark and baggy, self-conscious my tube will show. In one of the sessions we went to, they touched on that topic, and a lot of people had the same concern. In this specific group, there were a lot of people that have been sick a lot longer than me. They have had more time for trial and error.

 

               For this trip, I had packed my normal apparel of pajama pants, but I had also packed a wildcard—a purple skirt, just in case. That evening we were attending a special dinner, and I wore the purple skirt and was glad I did. When we went home, I resorted back to pajamas but I started to include some long, loose-fitting skirts and dresses. Last year I even wore a bathing suit. On our trip this year, my suitcase will include a good balance of sleepwear and classier wear.

 

               Also going on at the conference during lunch time and early afternoon was something similar to a job or college fair, with vendors from different companies. We got a really nice bag and by the end of the conference it was full of brochures, samples, and fun memories. Companies made sure they got to engage with you.

 

               There were people from different home care agencies, others that had new products for HEN and HPN, and even the TSA was there, giving tips on how to get through security check points. Exhibitors caught your attention by having something fun to do or giving away little things. At my home care company booth, you got to use props to look like a pirate and have pictures taken in front of a cardboard pirate ship. We actually framed them and still have them. There also was a man making really good caricatures. I recently came across ours, and it still makes me laugh.

 

               The evenings were a time for meet and greets and exchanging stories. One of the nights was a cookout. We were sitting alone and a family—a mom, dad, grandma, and two kids—joined us. Making connections like that is the best part.

 

               Another evening was the silent auction. There was everything from handmade jewelry to gift baskets, and there were raffles. I bid on a large stuffed dog. At first it was a joke, but we ended up winning him. At the end of the auction, a little boy suggested I name the dog Hugo. So I did. The auction raised money for the Oley Foundation, so it was for a good cause. Javi and I are already talking about this year’s auction and what our budget is.

 

               Checkout day they held a brunch. We sat at an empty table and Javi went to get food. By the time he came back the table was full. A woman from Israel sat by us. She had come by herself because of the cost and because her child cannot travel well because of illness. She came to see what products might be available. She said companies will not deliver to Israel.

 

               I now know that people want to be approached and want to make connections. I never like to tell my story because I don’t like when people say, “Oh, I’m so sorry” and feel emotional for me. But I am hoping I will make more connections this year.

 

               I wanted to include briefly some very inspiring statistics of the big picture: This Oley conference welcomed over 500 people to Cape Cod, including 87 children, and 150 of the total were new attendees. There were people from Massachusetts to California, to Ireland, England, and Israel. There were close to forty exhibitors showing and teaching about new products and services. And the silent auction raised over four grand.

 

Lifeline Letter, January/February 2018

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2/9/2019
Oley Regional Conference - Dallas, Texas

This website is an educational resource. It is not intended to provide medical advice or recommend a course of treatment. You should discuss all issues, ideas, suggestions, etc. with your clinician prior to use. Clinicians in a relevant field have reviewed the medical information; however, the Oley Foundation does not guarantee the accuracy of the information presented, and is not liable if information is incorrect or incomplete. If you have questions please contact Oley staff.

 

Updated in 2015 with a generous grant from Shire, Inc. 

 

This website was updated in 2015 with a generous grant from Shire, Inc. This website is an educational resource. It is not intended to provide medical advice or recommend a course of treatment. You should discuss all issues, ideas, suggestions, etc. with your clinician prior to use. Clinicians in a relevant field have reviewed the medical information; however, the Oley Foundation does not guarantee the accuracy of the information presented, and is not liable if information is incorrect or incomplete. If you have questions please contact Oley staff.
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