Is summer really almost over? Where did it go? I hope everyone had a great and healthy summer. Because of covid 19, we were not able to have our regular support group meetings. When I realized that we had not connected in 5 months and that I was truly missing everyone, I started to try to find a way to get together. I am NOT computer talented or aware of programs available. I received an invite to UC’s ZOOM virtual meeting and hesitantly decided to ask our members what they thought. The response was super. So many members were missing the meetings, the support and just connecting with everyone. So with much encouragement, I set up our first meeting in June. I was shaking and sweating, but we did it. Thank you ALL for your support and your nicely giggling at my stumbling. We had about 13 in attendance with Angela Waliszewski, registered dietician, as our speaker. As always, Angela was awesome. Each time she comes to speak, those who have heard her before learn something new, and for our new members they get a plethora of information. Our July meeting welcomed members from other support groups who are also looking for a virtual meeting to attend. I think we had about 15 people to listen to Susan Merys Bogatin (leader of the Boulder County Ostomy Support Group) present her experiences with enteritis and dehydration. We had a great open discussion about the need to be or have an “advocate” (a person who is there to offer independent support to those who feel they are not being heard and to ensure they are taken seriously, an advocate does not represent their own views but amplifies that of the person they are supporting.) It became very apparent that members can be afraid to stand up for themselves with their health team or feel they are not understood by the medical staff when in the hospital. Many members shared how scared they feel when in the hospital and how frustrated they get when it feels like no one is listening. Care providers also expressed how as much as they would like to be able to be this person, they just don’t know how to and are nervous about upsetting someone. There were more people who found this to be an issue than were comfortable embracing this role for themselves or someone else. With that being said, I am trying to find someone who can come and speak to us on “how to be an advocate”. I am hoping to find a psychologist or patient advocate who can give us some hints. If you happen to know someone who might be able to come and talk to us about this, please let me know. PLEASE NOTE: Until we can meet as a group, we will be having virtual meetings the 4th Tuesday of every month from 7PM-9PM, speakers to be announced. If you would like to attend virtual meetings, please download ZOOM on the computer that you are going to use. It is really helpful if you let me know if you are coming to the meeting, and then I will be sending a link to you via email the morning of the meeting. Around 6:45 touch the link and it should bring you to the “waiting room”. When I see you in the “waiting room”, I will acknowledge you and you will enter the meeting. It may take a few attempts to get into the meeting. What is in the works for our future meetings? I will be contacting our product representatives so that they can come and introduce new products from their companies and answer any questions that you may have about present products you are using. With covid 19 and the questions about the mail system, you may notice your supplies are coming late. The different companies tell us there shouldn’t be a problem. If you find that you are having trouble getting your supplies, please let me know and I will get you in contact with our representative for the correct company. I am looking for someone who would be willing to share the story of their journey in the newsletter. If you would like to do this, would you please let me know. It will be printed in the November/December 2020 newsletter. I hope everyone is well. Please don’t hesitate to call the “help line” or me at 303-489-0636 if you have questions in between meetings. YOU ARE NEVER ALONE. Sending best wishes to everyone,
Eileen Goldberg, President Why come to a meeting?
Quotes from members- “From the first meeting I went to before my surgery I have been so blessed to meet such open, honest and caring people. People who I can share my worries, concerns & triumphs of my ostomy. I can't imagine going through this journey without all of them. One can't possibly go to a meeting and feel like you don't fit in. Not only does it feel good to go and get advice, but I think it feels even better to go and give to someone just starting out on the journey.” Tracey Sloan (member) "One of the most important things that helped me was the magazine for ostomates called The Phoenix, (I was sent home from the hospital with an issue, but too afraid to even open the folder that would tell me of ‘all’ the things that, at that time, were disgusting to me). I didn’t open that folder for over a month after my surgery. When I did open it and begin to read ‘everything’ that was in it, I couldn’t stop, I couldn’t believe all this information was written down, and much of it was exactly what I was feeling! I read that issue of The Phoenix from cover to cover, and then went online to the UOAA. So much information was available to me! I called the local support group, and talked to Steve Johnson, (the President) who took at least 45 minutes of his precious time to talk and share with me. He, too, had a colostomy. Hearing him talk openly of something I was so ashamed of was very comforting. He encouraged me to attend a meeting, and meet others who have also been there and who are currently there. The support group was invaluable to me! Debbie Conway (member) See her entire article Several years ago, during a visit with my physician, he asked me, “What kind of exercise are you getting?” I said, “I’m playing on a softball team for guys 45 and over.” To which he replied, “Softball! That’s not exercise….that’s’ a social event!” I couldn’t really argue with him and we both chuckled about it. Not long after this humorous exchange with my doctor, I came down with a very nasty case of Ulcerative Colitis. Jim Folsom article (member) See his entire article
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