Being the real me...
PART 2 OF BEING ME
Please remember that this part is a reflection of my experience so it can't really be right or wrong. However feel free to ask questions or even share your experience, who knows, maybe you too were at the conference, but it was so crowded we may never have passed paths.
As we prepare to attend the next Oley foundation conference this June, in Saratoga Springs New York, I came across some interesting information that made me go into reflection mode. When we attended the conference one of the people we came across was a guy from California, and he had been writing a newsletter called The Sweet TPN times. He shared his personal story and spoke a little about the newsletter. He wanted me to become a reader and even share my story. He said he wanted to send me a few issues in the mail to check out. A couple weeks after the event, I was surprised to receive a large package and in it was many issues, roughly 100 pages ,some even dating back to 1995. I recently came across the pile of them and started reading some of the titles that appealed to my eyes instantly. I read a lot of the older articles first and it really shocked me to see the differences. Also, this year being the 30th anniversary of the conference, I found that the 20th anniversary was done at the same place. So reflection mode brings me back to the 2013 Oley conference. I also just want to mention that because this is from my memory, times, schedules topics, etc.. maybe a little off.
As I mentioned before, Javier and I went and it took place in Cape Cod Massachusetts, less then 90 minutes from our house. Although that seems like a short trip, those people that have similar issues as me know any travel takes a toll on us. So once we arrived, we checked into our hotel and headed over to the hotel it was taking place at. Because we did not find out about the Oley foundation until a short time before we were not able to stay at the hotel it was taking place at. There were a lot of frustrating times throughout when we wished we could jump on an elevator deal with it and come right back unfortunately 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. The cool part of the name tags were that every person put color coded stars on them. There was a table with a color key and stars, from what I remembered there were 4 colors, each standing for something else. I remember there was one for care taker or loved one, first time attendee, HEN or TPN patient, don't remember exactly. However it was a good system because you could see the stars and know upon approaching where they fit into the dynamic. So at check-in we got itinerary, and because I was exhausted we decided to skip the welcome event. I'm pretty sure we went back to hotel and passed out. Once we saw the event posted on website this year we knew if we wanted to go we should act prompt. So I am happy that we do have a room at the Gideon Putnam, and we cannot wait.
Everybody learns in different ways, and that is one of the reasons that I found this conference to be successful. In the mornings they had a certain topic and various speakers, presented in a similar form to a seminar. They had a little continental type breakfast in the hallway outside the conference room and then everybody, came together to what was called the "main session." There was a total of two, one each morning. They each focused on a different topic, and they each had multiple speakers. I have a hard time focusing, and sitting in the same spot for a long amount of time, causes a great deal of pain and it prevents me from learning and retaining information. However, I know that seminar like learning is the best way of learning for others. After the main session there was a break for lunch, but I do not remember exactly what was served.
The afternoon was much more flexible and you had the choice of what you wanted to attend. These were called "breakout sessions." Some of the topics I remembered were caring for your tubes, nutrition, clinical trials, swimming and bathing with catheters, and dating. I remember bits and pieces of the afternoon however the sessions we chose and went to were informative. The groups were much smaller and very interactive. I found out that a lot of the questions I had other people did as well. Most people that have seen me in the last couple of years know that I wear pajama pants the majority of time. I have not worn a pair of jeans for at least 5 years, my apparel has been referred to as "fake clothing." Due to my venting-Gtube, pants that hug close to skin, I cannot wear and tops I tend to wear dark and baggy, self conscious my tube will make an appearance. However, one of the sessions we went to touched on that topic, and a lot of people had the same concern. In this specific group, there were a lot of older people, people that have been sick a lot longer then me, so they have had a lot more time for trial and error. They also spoke about right and wrong items to use when caring for catheters. For this trip, I packed my normal apparel of loose fitting pajama pants, but I also packed a wildcard, purple shirt just in case. That evening we were attending a special dinner, and for some reason I did wear the purple skirt and glad that I did. I was nominated for a celebration of life award and I was called to go up and receive it and say something really short. When we went home, I resorted back to pajamas but started to include some long loose fitting skirts and dresses and started to match more and less frumpy and last year I even wore a bathing suit. On our trip, this year my suitcase will include a good balance of sleepwear and more classier wear.
Also going on was something similar to a job or college fair, however they were vendors for different medical companies. We got a really nice bag and by the end it was full with brochures and samples and even some fun memories. The event was very full, but most of the companies not only did they make sure you got the papers they were handing out they made sure they got to engage with you as well. There were people from different home care agencies and then there were some others that had new products for HEN and TPN, and even the TSA was there, giving tips on how to get through security check points. There were also some groups that caught your attention by having something fun to do or giving away fun things like candy or Frisbees. My home care company CORAM probably had the best booth because they made it fun, you got to use props to look like a pirate and got pictures taken in front of a cardboard pirate ship. It was really fun and we actually framed them and still have them. There also was a man that was making caricatures, and they were really good. I recently came across the caricature and it still makes me laugh, because Javier looks so realistic, mine was a little off. I will upload it too my Facebook. There were so many booths and so much information to take in. It has been two years so I'm hoping that they new and improved ideas and items. And cant wait to see the theme and hoping that there will be some fun aspects.
As I have mentioned before I have home healthcare and the company that services us is Coram. Before going we received an invitation in the mail inviting us to a special dinner, invitation only. The main reason I brought this shirt, was because I felt like this event might be a little more formal. Although I did have reservations of wearing "real clothes" I gained confidence after seeing what people were wearing. Some people had peek-a-boo catheters but it was ok nobody stared. The girl that sat down at our table, had a bag of IV fluids, hanging on hanger on a pole in the conference room. This event was nice, I was real jealous seeing the buffet and really wishing I could have some. They were serving prime rib, and then my absolute favorite, a thanksgiving-like- dinner. Before I got sick I loved thanksgiving, I could eat stuffing and cranberry sauce everyday. I loved having the leftovers thrown into a sandwich so yummy. I know dessert was either S'mores or an ice cream sundae bar. Most of the time we talk to the Coram team on the phone, so I was excited to meet my dietician at the time in person. She sat down with us before it started and we talked mostly about baby things since she was pregnant. It was nice to put a face to the voice, and a couple months later she did have the baby unfortunately she decided to move home and not to return to work. Basically the dinner consisted of eating and a speaker, that I believe talking about heir company and what they offer. They had slides they were showing, and near the end they called my name I went up and received a celebration of life award. I had to take a picture with the presenter before I returned to my table. Overall it was a nice event and we look forward to attending again, if we get an invitation.
The evenings were fun, a time for meet and greets, and exchanging stories. I remember one of the nights was a cook-out, the other was the Coram dinner. For desserts, depending on the night, they had S'mores and ice cream sundaes. During the cookout we were sitting alone and a family asked if they could join us. It was a mom, dad, grandma, and two kids, a boy and a girl. We introduced ourselves, and me and the mom starting having a side conversation. One of her kids had undiagnosed GI disease. The family lived in the Pennsylvania area and her child was treated at CHOP (children's hospital of Pennsylvania) and the mother was not being heard. The child was in pain, dr. would not order any studies, and after a few days of her child being in pain, they did CT scan and saw that all the tube feeds and what not was sitting in abdomen filling it and hardening causing a great deal of pain. She had the child transferred to Boston Children's hospital. We talked for a long time and exchanged information, unfortunately I lost her number. However, a couple months after the conference we saw the whole family at the cheesecake and they recognized me, and the child looked pretty good and the mom said they had just bought a house in Wellesley Massachusetts. Maybe we will see them again shopping or eating in the metro west area or at the Oley foundation conference. Although we didn't stay in touch, making connections like that is the best part.
Also another highlight was the silent auction. There was all different types of stuff, all the way from hand made jewelry to gift baskets. There were also raffles going on throughout the time of the auction. I remember walking around and it just being so crowded, however we were able to see everything and tried for a few things. I don't know why but for some reason I decided to bet on a large stuffed dog. At first it was a joke, but we ended up winning him and trust me when I say a large stuffed dog. I remember when the auction closed and everyone was trying to leave or find the appropriate place to pay and it was just chaos. To make matters worst I was dragging along a giant stuffed dog, think about an amusement or carnival game that you can win stuffed animals, picture that and double the size of the largest you could win. As the crowd got smaller we attempted to leave and on the way out I remember three little kids, each having a sign that
you knew that were the patients. One of the little boy asked me if I had a name for my dog, when I said no the kid says you should name it Hugo. So I did, and on the way home Hugo took up a whole seat and then some. May seem like a waste of money for some, but I saw it as a good cause. Javi and I are already talking about this years auction and what our budget is.
Checkout day they held a brunch and I think I met the most people there. People were really trying to interact. We sat at an empty table and Javi went to get food, by the time he came back the table was full. A women sat down with us and she was from Israel. She told me she came by herself because of the cost and her child can not travel well because of illness. She said she came because she needed to see if they had advancement in products for her child. She said companies will not deliver to her country. There also was a lady taking pictures for the Oley foundation website. I never saw those pictures, really looking forward to be part of and see this years. Sad that the last event seemed to be the most interactive and the most connections seem to be made, unfortunately that was check out day, and a lot of people missed out because they had flights to catch. I now no 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 they feel emotional for me. But i hoping that I will make more connections this year and hopefully people to stay in touch with.
Although this post is factual to my specific experience, I wanted to include briefly some very inspiring statics of the big picture. The Oley conference welcomed over 500 people to Cape Cod, including 78 children and 150 of the total were new attendees. There were people from Massachusetts all the way across the country to California and even had attendees all the way from Ireland, England and even Israel. Their were close to forty exhibitors showing and teaching about new products and services. And the silent auction raised over 4 grand.
Attending my first Oley conference... OBSTACLE COMPLETED
Attending my second Oley conference...OBSTACLE IN PROGRESS
I HAVE INCLUDED PICTURES OF HUGO AND THE CARICATURE ON MY FACEBOOK
Please remember that this part is a reflection of my experience so it can't really be right or wrong. However feel free to ask questions or even share your experience, who knows, maybe you too were at the conference, but it was so crowded we may never have passed paths.
As we prepare to attend the next Oley foundation conference this June, in Saratoga Springs New York, I came across some interesting information that made me go into reflection mode. When we attended the conference one of the people we came across was a guy from California, and he had been writing a newsletter called The Sweet TPN times. He shared his personal story and spoke a little about the newsletter. He wanted me to become a reader and even share my story. He said he wanted to send me a few issues in the mail to check out. A couple weeks after the event, I was surprised to receive a large package and in it was many issues, roughly 100 pages ,some even dating back to 1995. I recently came across the pile of them and started reading some of the titles that appealed to my eyes instantly. I read a lot of the older articles first and it really shocked me to see the differences. Also, this year being the 30th anniversary of the conference, I found that the 20th anniversary was done at the same place. So reflection mode brings me back to the 2013 Oley conference. I also just want to mention that because this is from my memory, times, schedules topics, etc.. maybe a little off.
As I mentioned before, Javier and I went and it took place in Cape Cod Massachusetts, less then 90 minutes from our house. Although that seems like a short trip, those people that have similar issues as me know any travel takes a toll on us. So once we arrived, we checked into our hotel and headed over to the hotel it was taking place at. Because we did not find out about the Oley foundation until a short time before we were not able to stay at the hotel it was taking place at. There were a lot of frustrating times throughout when we wished we could jump on an elevator deal with it and come right back unfortunately 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. The cool part of the name tags were that every person put color coded stars on them. There was a table with a color key and stars, from what I remembered there were 4 colors, each standing for something else. I remember there was one for care taker or loved one, first time attendee, HEN or TPN patient, don't remember exactly. However it was a good system because you could see the stars and know upon approaching where they fit into the dynamic. So at check-in we got itinerary, and because I was exhausted we decided to skip the welcome event. I'm pretty sure we went back to hotel and passed out. Once we saw the event posted on website this year we knew if we wanted to go we should act prompt. So I am happy that we do have a room at the Gideon Putnam, and we cannot wait.
Everybody learns in different ways, and that is one of the reasons that I found this conference to be successful. In the mornings they had a certain topic and various speakers, presented in a similar form to a seminar. They had a little continental type breakfast in the hallway outside the conference room and then everybody, came together to what was called the "main session." There was a total of two, one each morning. They each focused on a different topic, and they each had multiple speakers. I have a hard time focusing, and sitting in the same spot for a long amount of time, causes a great deal of pain and it prevents me from learning and retaining information. However, I know that seminar like learning is the best way of learning for others. After the main session there was a break for lunch, but I do not remember exactly what was served.
The afternoon was much more flexible and you had the choice of what you wanted to attend. These were called "breakout sessions." Some of the topics I remembered were caring for your tubes, nutrition, clinical trials, swimming and bathing with catheters, and dating. I remember bits and pieces of the afternoon however the sessions we chose and went to were informative. The groups were much smaller and very interactive. I found out that a lot of the questions I had other people did as well. Most people that have seen me in the last couple of years know that I wear pajama pants the majority of time. I have not worn a pair of jeans for at least 5 years, my apparel has been referred to as "fake clothing." Due to my venting-Gtube, pants that hug close to skin, I cannot wear and tops I tend to wear dark and baggy, self conscious my tube will make an appearance. However, one of the sessions we went to touched on that topic, and a lot of people had the same concern. In this specific group, there were a lot of older people, people that have been sick a lot longer then me, so they have had a lot more time for trial and error. They also spoke about right and wrong items to use when caring for catheters. For this trip, I packed my normal apparel of loose fitting pajama pants, but I also packed a wildcard, purple shirt just in case. That evening we were attending a special dinner, and for some reason I did wear the purple skirt and glad that I did. I was nominated for a celebration of life award and I was called to go up and receive it and say something really short. When we went home, I resorted back to pajamas but started to include some long loose fitting skirts and dresses and started to match more and less frumpy and last year I even wore a bathing suit. On our trip, this year my suitcase will include a good balance of sleepwear and more classier wear.
Also going on was something similar to a job or college fair, however they were vendors for different medical companies. We got a really nice bag and by the end it was full with brochures and samples and even some fun memories. The event was very full, but most of the companies not only did they make sure you got the papers they were handing out they made sure they got to engage with you as well. There were people from different home care agencies and then there were some others that had new products for HEN and TPN, and even the TSA was there, giving tips on how to get through security check points. There were also some groups that caught your attention by having something fun to do or giving away fun things like candy or Frisbees. My home care company CORAM probably had the best booth because they made it fun, you got to use props to look like a pirate and got pictures taken in front of a cardboard pirate ship. It was really fun and we actually framed them and still have them. There also was a man that was making caricatures, and they were really good. I recently came across the caricature and it still makes me laugh, because Javier looks so realistic, mine was a little off. I will upload it too my Facebook. There were so many booths and so much information to take in. It has been two years so I'm hoping that they new and improved ideas and items. And cant wait to see the theme and hoping that there will be some fun aspects.
As I have mentioned before I have home healthcare and the company that services us is Coram. Before going we received an invitation in the mail inviting us to a special dinner, invitation only. The main reason I brought this shirt, was because I felt like this event might be a little more formal. Although I did have reservations of wearing "real clothes" I gained confidence after seeing what people were wearing. Some people had peek-a-boo catheters but it was ok nobody stared. The girl that sat down at our table, had a bag of IV fluids, hanging on hanger on a pole in the conference room. This event was nice, I was real jealous seeing the buffet and really wishing I could have some. They were serving prime rib, and then my absolute favorite, a thanksgiving-like- dinner. Before I got sick I loved thanksgiving, I could eat stuffing and cranberry sauce everyday. I loved having the leftovers thrown into a sandwich so yummy. I know dessert was either S'mores or an ice cream sundae bar. Most of the time we talk to the Coram team on the phone, so I was excited to meet my dietician at the time in person. She sat down with us before it started and we talked mostly about baby things since she was pregnant. It was nice to put a face to the voice, and a couple months later she did have the baby unfortunately she decided to move home and not to return to work. Basically the dinner consisted of eating and a speaker, that I believe talking about heir company and what they offer. They had slides they were showing, and near the end they called my name I went up and received a celebration of life award. I had to take a picture with the presenter before I returned to my table. Overall it was a nice event and we look forward to attending again, if we get an invitation.
The evenings were fun, a time for meet and greets, and exchanging stories. I remember one of the nights was a cook-out, the other was the Coram dinner. For desserts, depending on the night, they had S'mores and ice cream sundaes. During the cookout we were sitting alone and a family asked if they could join us. It was a mom, dad, grandma, and two kids, a boy and a girl. We introduced ourselves, and me and the mom starting having a side conversation. One of her kids had undiagnosed GI disease. The family lived in the Pennsylvania area and her child was treated at CHOP (children's hospital of Pennsylvania) and the mother was not being heard. The child was in pain, dr. would not order any studies, and after a few days of her child being in pain, they did CT scan and saw that all the tube feeds and what not was sitting in abdomen filling it and hardening causing a great deal of pain. She had the child transferred to Boston Children's hospital. We talked for a long time and exchanged information, unfortunately I lost her number. However, a couple months after the conference we saw the whole family at the cheesecake and they recognized me, and the child looked pretty good and the mom said they had just bought a house in Wellesley Massachusetts. Maybe we will see them again shopping or eating in the metro west area or at the Oley foundation conference. Although we didn't stay in touch, making connections like that is the best part.
Also another highlight was the silent auction. There was all different types of stuff, all the way from hand made jewelry to gift baskets. There were also raffles going on throughout the time of the auction. I remember walking around and it just being so crowded, however we were able to see everything and tried for a few things. I don't know why but for some reason I decided to bet on a large stuffed dog. At first it was a joke, but we ended up winning him and trust me when I say a large stuffed dog. I remember when the auction closed and everyone was trying to leave or find the appropriate place to pay and it was just chaos. To make matters worst I was dragging along a giant stuffed dog, think about an amusement or carnival game that you can win stuffed animals, picture that and double the size of the largest you could win. As the crowd got smaller we attempted to leave and on the way out I remember three little kids, each having a sign that
you knew that were the patients. One of the little boy asked me if I had a name for my dog, when I said no the kid says you should name it Hugo. So I did, and on the way home Hugo took up a whole seat and then some. May seem like a waste of money for some, but I saw it as a good cause. Javi and I are already talking about this years auction and what our budget is.
Checkout day they held a brunch and I think I met the most people there. People were really trying to interact. We sat at an empty table and Javi went to get food, by the time he came back the table was full. A women sat down with us and she was from Israel. She told me she came by herself because of the cost and her child can not travel well because of illness. She said she came because she needed to see if they had advancement in products for her child. She said companies will not deliver to her country. There also was a lady taking pictures for the Oley foundation website. I never saw those pictures, really looking forward to be part of and see this years. Sad that the last event seemed to be the most interactive and the most connections seem to be made, unfortunately that was check out day, and a lot of people missed out because they had flights to catch. I now no 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 they feel emotional for me. But i hoping that I will make more connections this year and hopefully people to stay in touch with.
Although this post is factual to my specific experience, I wanted to include briefly some very inspiring statics of the big picture. The Oley conference welcomed over 500 people to Cape Cod, including 78 children and 150 of the total were new attendees. There were people from Massachusetts all the way across the country to California and even had attendees all the way from Ireland, England and even Israel. Their were close to forty exhibitors showing and teaching about new products and services. And the silent auction raised over 4 grand.
Attending my first Oley conference... OBSTACLE COMPLETED
Attending my second Oley conference...OBSTACLE IN PROGRESS
I HAVE INCLUDED PICTURES OF HUGO AND THE CARICATURE ON MY FACEBOOK
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