Month: October 2022

This sounds simple enough, I am certain. Yet even for the most secure of us, it can be difficult when faced with a health issue, to believe in our feelings about our own body. We believe, and rightly so, that the medical community has far more understanding of what may be facing us than we do, and we are fearful about upsetting or challenging those in charge of our health. I have come to believe that with respect and appreciation for the knowledge our physicians are able to offer, we can build a network that provides even more valuable information. I also believe that most physicians are supportive of going further when the situation presents itself and may even welcome it.

Recently, a family member was caught in what had become a failure chain of being pushed from one subspecialty to another. None of the physicians were able to provide a diagnosis or a conclusive understanding of her problem. The only solution was to handle the symptoms, and even at that, she was getting sicker and sicker. The hardest part for all of us who love her is that despite how often her integrity and understanding of her body was challenged, she KNEW there was something that needed to be fixed. It is so easy to begin to believe that what needs to be fixed is your mind, questioning your emotional stability, your need for attention. How many times can you stand for yourself and state that the problem “isn’t in my head, it is in my abdomen?”

Rather than go down the rabbit hole of frustration and doubt, our family member began to look for her own answers, using the internet to source others with similar issues. She not only found others with similar issues, but she also found the surgeon that helped them recapture their lost lives. In her case, although the symptoms presented in her gastrointestinal tract, it was a vascular issue, and thus, a Vascular Surgeon who was able to give our girl back her future. 

Not all stories have or need such investigatory journeys. Most have issues that fit well into the norms of the specialties with which we are familiar. I do know, however, that despite dedicated, skilled and devoted physicians, it took well over two decades for me to find my answer, my ileostomy. Admittedly, some routes are more circuitous than others. What I learned along the way is that we know our bodies better than we realize, and there is nothing wrong reaching out for   another opinion; is there someone who deals with this problem or symptoms more often; is there something more I can do? My own road took me to the Mayo Clinic as well as many urban medical centers. I had to trust my instincts, like my family member, continuing to seek answers. The positive news is that the medical community is ever evolving, and we live in good times for great care. I put my faith in my team of physicians first, and then I trust my instincts!

 

How dare the thief take so much, destroy so much, and then want to take even more? Will the thief not be satiated until there is nothing but a shell? It angers me just to identify the power this thief renders over us, the potential of eviscerating memory, cognition, language, even the ability to write […]

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I was a speaker at the SUNA (Society of Urologic Nurses) Pre-Conference in New Orleans at the end of September…my topic was Body Image and the Ostomate.  Aside from worries about the course of Hurricane Ian, I also worried about the ability to make clear the importance of guiding and supporting those living with an […]

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