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"OSTOMY NEWS"
The Official Newsletter of the Ostomy Association of Greater Orlando
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OUTBACK STEAKHOUSE
(Rather than at the hospital - however, it is very close by!)
Saturday, June 15
th at 11:00 A.M.
1927 Aloma Avenue
Winter Park Florida
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PROGRAM
JUNE 15TH SUMMER LUNCHEON!
June is traditionally our “Summer Luncheon” meeting; this year is no exception. Please join us at the OUTBACK STEAKHOUSE (rather than at the hospital) on Saturday, June 15th at 11:00 A.M. The restaurant is located at 1927 Aloma Avenue, Winter Park Florida (across the street and not too far from where we usually meet).
Appetizers will be provided, but if you’d like to order a full meal, everyone will be responsible for his or her own check. In addition to the regular menu, the lunch menu will be also available, so there will be a number of delicious meals to choose from, for under $10.00.
If you are attending our meeting for the first time, please join us at 10:45, so we can greet you personally and give you our new member information packet!
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NO FORMAL MEETINGS DURING THE SUMMER,
BUT WE’RE STILL KEEPING IN TOUCH FOR JULY AND AUGUST!
In the past, formal OAGO meetings have not taken place during July and August, since so many people traveled or vacationed during the summer. However, as our group keeps growing, and we’re attracting more and more members, it is important that we still keep in touch and are available whenever we’re needed. To this end, we will continue to keep our website up-to-date, publish our newsletter (although it might be shorter), and offer several new “Pop Up” get-togethers.
These “Pop Up” meetings will be held in different locations all across greater Orlando and beyond (Clermont, Oviedo, Altamonte Springs, etc.). We will meet casually at different restaurants for lunch or breakfast. There will be no formal business meeting or agenda; this will just be an opportunity to get together socially with other ostomates.
Information about these Pop Ups will be sent via E-mail or published on our website
(www.oagohome.org) at least three days in advance. We will provide the time, location, and information about the restaurant (some fun and interesting new menus are on the horizon). Although you don’t have to make a firm commitment, please RSVP so we know how many seats to save. Everyone will be responsible for paying for his or her own meal.
Do you have a favorite restaurant and want to serve as a Pop Up host or hostess? Please contact Erica (president@oagohome.org) for further information.
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Interested in participating in a survey?
We received the following request in an E-mail. I took the survey myself and thought the information would be helpful to our community. Participation is purely optional.
My name is Leslie Miller and I am a doctoral student at the University of Oklahoma in Norman, OK in the Department of Sociology (an equal opportunity institution). I am a former ostomate and I am interested in the experiences of ostomy patients today, especially as it relates to perceptions and experiences. I am seeking participants to fill out my survey. This research is for my dissertation.
I would really appreciate your participation and your ostomy group’s participation if you would not mind sharing with your members? Participants may also enter a drawing for the chance to win one of fifteen Amazon gift cards.
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Greetings Everyone,
Every month almost 100 people open and read our newsletter, yet our meeting attendance is usually only 20 members a month. Even for those who attend, there are only a few members who are there every single time. Should we be worried? Yes and No.
Yes, we should be worried, if we are not doing our job – offering support to fellow ostomates. Are we making everyone feel welcome? Are we treating everyone with respect? Are we providing relevant and accurate information? Are we offering interesting and diverse meeting programs? I think we are doing all of these things, but there is always room for growth and improvement.
However, in a strange way, the fact that we do not see the same faces every month, is actually a testament to the strength of our organization. While a few people may have left because they felt we didn’t do our job well enough, for many who no longer attend meetings “in person,” we may have done our job too well!
Some people attended their first meeting with a degree of fear, sadness, and confusion as to what their new “ostomy” life would bring. However, by attending our meetings and meeting our members, their questions were answered, their needs were met. They grew confident and returned to their regular lives (now perhaps to run a marathon on a Saturday morning, instead of attending a support group).
Some people (a relatively large number) visited us as part of a detour in their physical lives. They had temporary ostomies that were later reversed. They were grateful for what we offered at the time that they needed us, but that is no longer the case. They may no longer attend meetings, but I assure you, they remember and care about us. Many have donated no longer needed supplies to our gift room.
Some people attend meetings primarily because they want to share their knowledge and experience so others don’t have to go through the same trials and tribulations they did. Most importantly they wanted to prove to new ostomates that ultimately, ostomy life could not only be positive, it could be wonderful. These people became officers and leaders with a single goal: keep the group strong and healthy until they could pass the baton to someone else. We are here because of them, even though most of us do not even know who they were.
Sadly, it is important to recognize that for some of us, this journey will not always have a happy ending. Although we are all warriors, and fight valiantly to the end, some of us don’t attend meetings because it is no longer possible to do so.
Although people in our group may come and go, they
all have contributed, and continue to contribute, towards our goal – supporting fellow ostomates and their families. It is this purpose that must endure. Although there might only be 20 or 30 present, we actually carry the strength and spirit of all the members who have come before us and that number is grand and growing.
Sincerely,
Erica Michaels
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Have you paid your dues? We need your help to continue and grow our programming. If you haven't yet paid your dues, you can bring them to the next meeting, pay right from our website www.oagohome.org, or mail them to: Patrick Rodgers, Treasurer, 309 E Citrus Street Altamonte Springs, FL 32701
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MEMBER PORTRAIT
Roger Murray
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Our dear friend and former President Roger Murray, age 90, died May 28, 2019 in Longwood. He was a native of Mt. Lebanon, PA., where he met and married the love of his life, Suzanne. They were married 68 years.
Besides Suzanne, Roger will be missed by his three daughters and their families which include 17 grandchildren and great grandchildren. Roger was so proud of all of his family!
In 1992 Roger was diagnosed with Colon and Rectal Cancer. He had colostomy surgery and then proceeded to go through the difficult task of chemotherapy and radiation treatments. His daughter said. “Dad, you are sooo brave!”
Soon after Roger recovered from all of the trauma, he started attending local UOA meetings in Orlando. Because he excelled in sales (working until around age 80and traveling all over the world to such places and India, Italy and Taiwan), his personality and experience made him a great spokesman for UOA and our local chapter.
After just two years, he and Suzanne joined the local leaders such as President Peggy Kaye, Viola Huttoe, Evelyn Vihlen, and Frank Rocco to host the 1994 National UOA conference here in Orlando. Suzanne said, “That conference was the first time that I knew that children had to have ostomies!”
Besides always being available to cheer a new ostomate, Roger took on OAGO President for several years until he and Suzanne moved to Ormond Beach. He always said, ‘You have to die or move away to get out of being President!”
But soon after moving to Ormond, Roger and Suzanne started another support group at the new Florida Hospital that had just opened there. They again cheered folks helping them cope and thrive with monthly meetings, volunteering at the hospital, collecting and distributing extra ostomy supplies.
Suzanne told a story of how Roger got a call from a young man who was homeless. Roger agreed to meet him in a shopping center parking lot to get the supplies to the man. She said “It looked so much like a drug deal that I had the terrible feeling that the police were going to show up any minute to make an arrest! Wouldn’t the police have been surprised?!”
Roger, you are loved and missed by so many folks, both young and old. I know you’re saying to the angels:
“Keep your halo straight and your clips tight!”
Your friend,
Shelley Dittmer
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Last Month's Meeting Notes
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Last month’s meeting featured two guest speakers from our own members: Karen Costa and Kay Webb.
Karen is not the ostomate, her son is. Andrew, is a wonderful young man who is entering puberty. These normal physical and mental changes can present new issues in terms of ostomy care. Since Andrew also has Down syndrome; the transitioning of personal care is even more challenging. Karen asked the group to provide practical suggestions to help make this transition. Many alternatives were provided, and Karen will keep us posted on what works.
Kay’s presentation was an extremely personal and deeply moving one. The group was spellbound as Kay shared with us the story of how she “woke up” to what would be a permanent ostomy - the result of being shot in the back. The amount of courage it took to survive the ordeal, both physically and emotionally, was awe inspiring. We also recognize and honor the graciousness of sharing her story with us.
We drew two names for the Panera fundraiser. The first prize winner, “Lunch for a Year” went to Dan Ehrlich. The winner of the second prize, “Bread for a Year” went to Erica Michaels (that gift certificate was donated, in turn, to Oviedo High School).
We collected names of people who will be “Pop Up” hosts. We also announced the June meeting at Outback.
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Would You Like a Name Tag?
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Can we make you a name tag? Please E-mail your first and last name and the correct designation (type of ostomy, family member, care provider, or medical professional) and we’ll try to have it ready for you at the next meeting.
E-mail: support@oago.org.
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We are looking for fundraiser ideas! If you know of any companies that will host “online” fundraisers, please let us know. Or, if you have your own business, or work for a company that would like to donate goods or services as a raffle prize, that would be great as well!
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Adapting to life with an ostomy can a challenge. But what’s with these new words! Appliance? Pancaking? Barbie Butt? Some terms come from medical terminology, but others are “insider” words (slang expressions) used by ostomates who “live” them first hand.
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BARRIER RING
A barrier ring is an (optional) accessory that protects the skin around the stoma. It acts as an extra “barrier” that can extend wear time and protect against leakage. The materials, shape, and size may vary, but they are usually flexible. They can be very helpful for stomas that are not “perfectly” round. Most manufacturers will be happy to help you select the right size and shape and send you free samples to try.
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BARRIER WIPES
Ostomy barrier wipes, sprays, or creams are used to soothe and/or protect the skin around your stoma (not on the stoma itself!). They are applied directly to clean skin before putting on a new flange/wafer. In some cases, this makes it easier for the wafer to stick, in others it may make it more difficult.
*Many ostomates find these products unnecessary unless there is an actual irritation issue. They are most commonly used in the initial surgery recovery stage, but they may be helpful to have on hand.
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BARRIER PASTE
Barrier paste is an (optional) product that may help prevent leaks, especially if the skin around the stoma is uneven (dips, scars, skin folds, etc.). It comes in a tube and has the consistency of toothpaste or caulking. It can be applied directly to the skin or on the skin side of the flange/wafer itself. Contrary to common belief, barrier paste is NOT an adhesive, it is a “filler.” Different manufacturers have different products. Some pastes may be smooth or slightly gritty, some contain alcohol, some contain extra vitamins and minerals, some are easy to remove, and some need an adhesive remover. Most manufacturers will provide a free sample. It is important to find the product that works best for you.
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ADHESIVE REMOVER
An adhesive remover can make changing your appliance (removing the wafer) a little easier, by reducing the pull on your skin. In addition, if you use a barrier ring or barrier paste, these products help remove any excess residue. There are several options available, the most common are sprays and individually packed “wipes.” Some contain alcohol and some are alcohol free. Ask for a free sample from your manufacturer.
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Be careful!
Sometimes packaging can look very similar.
Barrier wipes and adhesive removers are NOT the same!
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Want more information about barriers and similar products? Visit the links below!
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UOAA (United Ostomy Association of America)
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UOAA 2019 NATIONAL CONFERENCE
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UOAA’S 7th National Conference will be held in Philadelphia, from August 6th through August 10th. This is a fantastic opportunity to meet with ostomates from all over the country (and world). Attend interesting and informative lectures, join in fun social events, and explore the latest ostomy products and innovations from vendors.
For more information, just "click" the bell. Do you want to know more from members who have attended in the past? Check out the conference's Facebook Event Page.
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Our thoughts and prayers are with the Roger Murray family.
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We have added a "Member News" section to our newsletter! Please E-mail any important life events: "stomaversaries," new jobs, birth announcements, impending surgeries, etc. to newsletter@oagohome.org. and we'll try to get the information into our next newsletter.
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Thank you sponsors, donors, and advertisers. Your support of OAGO allows us to reach out to fellow ostomates and provide quality information and programs.
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Phoenix Magazine is a fantastic publication for ostomates and their families.
Click above to find out more!
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Are you trying to contact us? Looking for an ostomy nurse? Supplier? Or, do you need a copy of our membership form? You can now access this information quickly and simply, by clicking the links below. From there, you can either save the documents to your computer or print them out to hang by your phone.
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