by BD, TPC Forum Member

handshake-msI should soon receive a letter from Alabama confirming the cancellation of my Medicaid and food stamps. Once I have that letter, I can apply here as a Florida resident. That will let me find a local doctor.

Finding a doctor is a complicated task; finding a good doctor is even harder. Before I do anything I have to decide what I want from them. The doctors I had while living in North Carolina were strictly providing maintenance healthcare; basically they continued to write prescriptions for the medicines previously recommended by my providers who I saw when I lived in Massachusetts. That was fine. They were close by and it didn’t require a lot of me to see them. With the exception of a few new medications they wanted me to try, there were not a lot of decisions to be made or adjustments in my care. With only a few exceptions, there was no need for exhausting travel back and forth to specialists for additional tests or opinions.

Now that I have moved to the Florida coast, it has been suggested that I find a primary care physician who may be more aggressive and/or send me to specialists for testing to adjust my medications if needed. That’s a good idea. However, I need to decide how much energy I’m willing to spend. How much energy do I have to spend?

You see, on my own with no interpreter, it’s easy for me to get off track. Just walking into the office requires mental preparation that leaves me worn out. When that happens my brain and body shift into “automatic mode.” I lose my train of thought quite easily. A good example of that was my experience with a neurologist my last doctor sent me to see. As soon as I sat down all of the information I had to convey overwhelmed me. I had no idea where to start or what to say. The notes I made ahead of time were useless. I got lost in them. They became just one more set of things for me to try to process. They turned to gibberish and made no sense. The same was true of the information coming back to me from that doctor. Even now, the bits I remember may not be correct. Parts of that experience got lost and forgotten over the next few hours and days. This is the critical time for me to remember important information.

This neurologist started off by giving me a list of words to remember. After talking to me for a while he asked me to repeat the list. I was able to do it and he concluded that there was nothing wrong with my short term memory. He stated that the previous doctors were wrong and I just needed to pay closer attention—to focus. It took me several days to realize that while I was working to remember the list he gave me, the processing part of my brain had shut down. From his perspective I was able to remember the list and answer his questions so, no problem. The truth is I’ve had so much practice faking it and keeping the conversation going that many, perhaps most, of the answers I gave him during our exchange were wrong. They sounded correct but weren’t.

I could go back to a neurologist for another round of exhausting tests or a brain scan, again to what end? Now, there are new tests that could be done or old ones that could be re-done. What are they going to show? Have I’ve gotten worse or not? Perhaps there’s something else or something new? Whatever the tests might reveal, what will they accomplish? If they were to show no change or that I’m not as bad or I’m worse than I think, how would that knowledge change my day to day reality?

The doctors I have seen all agree on one thing–there’s no fixing me. All they can do is treat the symptoms I have. Perhaps different inhalers will help me breathe easier. What do I gain, however, more energy? What good is having more energy if the rest of my body is so broken that I can’t use it?

Perhaps I could find a good doctor who understood. Maybe he/she could tell me more of what’s happening to me, what to expect as my body continues to break down, or give me an estimated time frame for that process. How does that help me? Why would I even want to know more than I already do? How would that knowledge change my day to day reality? Am I better off doing that or enjoying the time I have left before I start drooling on myself? These issues are scary. I have a hard time looking at them. I’ve seen other people die of these things.

You see, for me, choosing a doc will not be easy! I have a lot of soul searching to do before I decide. Perhaps I have already decided and don’t realize it.

Have you ever experienced a dilemma like this during your pain journey? If so, please share with me. Let’s learn together from our personal thoughts and experiences.

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