Living with Gastroparesis

For the most part, I am able to find something to make me smile through the often rough days I experience (be it from pain, GP flares, or just the ignorance I see in people everyday). But today is not one of those days. As some of you know, I was being worked up for a spinal cord neurostimulator to help relieve the chronic pain I have been suffering from the numerous screw ups during tube placements and surgeries. It was my last chance at being able to use something non-narcotic to relieve the ever present pain and get off the other narcotic pain medications I am currently on so that I might have some sliver of hope that I might start a family one day (the only dream I have really ever had). Today that little sliver of hope was stripped from the shred of dignity I had left standing. I have hundreds of specialists for one condition or another and it was my intent to find the best physician for those conditions. No institution is ever lucky enough to have the best of the best for every department which leaves me in the middle of five different networks. For years I have been the relay person, passing information from one doctor to the other when something new came up or a test was performed or samples were examined. For years I have been patient and jumped through every hoop they had for me in hopes that one of those hoops would be the last and everyone would finally just work with me, instead of against. It is only now that I find out that I’ve been always needing to prove myself to these doctors instead of them doing what I think their job is, and that is to listen, work at understanding and then believing. I’ve also realized that it is not MY job to be the relay person in this team of physicians, the quarterback of the group who has to both deliver information and be able to step back from it all, trying to connect all the dots in attempts at deriving a possible conclusion. This is the job of my PCP. The same PCP that has accused me of all sorts of horrible things and can’t get her focus off anything but my deteriorating mental health (again, who wouldn’t be depressed when faced with many life-long chronic conditions?). I stuck with her only because of her ties with my gastroenterologist that until this point has been the ONLY physician that has given me the time of day. And of course for that, I am most grateful. He has been my acting PCP, pain specialist, hematologist among other things. It isn’t fair for him or I, and it is time I found a PCP that does their damn job.

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