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Everything on this site seems to be run by AI. It would be nice if there were moderators here who were knowledgable in this rare disease.
My name is Kathleen Wikstrom and I have an intra-abdominal desmoid. I have a lot of knowledge and try to help where I can. I am not a doctor. I have done much research on my own and am beating the odds in that I am still alive. 28 years and counting and on Ogsiveo since 12/28/23
Thanks for the automated reply
Ashley, thank you for your kind words. Being a AA+ type person I find it very hard not working, helping when and where I think I am needed and especially having to give up private lessons for piano, organ and voice. I especially miss playing and singing as a church organist and playing my piano. Between this condition, fibromyalgia, arthritis and other problems I can't do any of it. I am now looking for someone to purchase my six and a half foot Baldwin grand piano that was built in 1913. I'm a shadow of my former self and I find it hard to accept. Now I am having trouble with being able to cook some of the dishes my family always enjoyed so much. I especially loved making my Italian Bread, polenta, braciole and many other many step or work dishes. I guess I am just getting tired with getting old. My husband kids me with being born on leap year. He says you can't be old your only eighteen. 😁. He's crazy sometimes. Thank God I have him.
Thank you for responding to this @A MyDesmoidTumorTeam Member. We completely understand your decision as your health always comes first, and there is absolutely no pressure to take on anything extra. Just being here, when you’re able, already means so much to this community.
We’re grateful for you, and we’re here for you too. Please continue to take care of yourself and listen to your body. 💛
Hi @A MyDesmoidTumorTeam Member 😊 Yes, there are real community managers here. We’re always around, but we try to create space for community members to show up for each other and share their own experiences.
We step in when needed, but a big part of this space is peer support. If you ever need help or have a question, feel free to tag us anytime.
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