Another great question has come in that I want to share my thoughts about with you:
Hi,
I was diagnosed with neurogenic bladder and IBS three years ago. I have been frustrated with the lack of information and support my doctors give me. So, I am delighted to have found you are blogging about people like us!
I was just wondering if you have thought about sharing all except the most private of questions and answers with all of us? It would be a great source of learning for us. There might be a way to remain anonymous, for those of us who prefer it or even a forum where each of us could share or contact each other. Also, it would be interesting for some to find others like ourselves in our own areas!
Thank-you for trying to help us!
Love, Dee
Dear Dee,
Thank you so much for your question and supportive feedback. I love to have the chance to meet and talk with my readers!
I do understand your frustration – completely! When I was first diagnosed with neurogenic bladder and bowel it seemed that everything I read on the topic said the same thing and did not answer my primary burning question: So how do I live my life now?? I also wondered how on earth I got myself in this situation, anyway . . . I will leave that for another time.
We are so lucky because open forum discussion groups are already readily available online! I can't count the number of times their discussions and members have picked me off the ground and have helped me in many ways. Here are several groups that I find most helpful:
Inspire – an online support group. It covers all kinds of medical situations; I am in both the Bladder and Kidney support groups. Once you register online you can put your thoughts out there or comment on an ongoing discussion and get real replies from real people like you. Not long ago, I was really down because of a medical situation and all I could manage to write was "bladder, Botox, afraid." Some sweet lady wrote back to me. I felt both heard and very comforted. I was not walking this path alone. Inspire also has a feature that allows people to see how close in proximity they are to others, so personal contact is possible. Please check them out.
Neurogenic bladder and bowel – on Facebook - this is a group that you need to request to join. It is managed by a urologist in Dubai. He runs a tight ship and there is a lot of protection for us to discuss our real concerns about what is happening in our lives. I have become close to some of the members in this group, from all over the world. It means a lot to me to be able to ask a question or just vent within this forum.
Patients Like Me – this group is a little more detailed than Inspire.com. By that I mean, it asks a lot of more technical medical questions . . . perhaps because doctors use it, I don’t know. I use it the least of these three, but I do check it now and then.
Even with all these support groups already up and running I do not think I need to change the format of my blog, neurogenicbladder.me I have been happy to see all of the questions that come in to both the Ask A Question and Comment portions of this blog. There are vital exchanges here that I value and learn so much from. But to have multiple online forums to address my questions — I feel we are quite fortunate to have the option of turning to multiple sites, resources and communities when we find the need.
Thank you so much for your question and best wishes as you walk this special walk we share.
More later . . . .