Like you were a miser
I know that the hospital team, which is currently providing my primary care, communicates with my regular team, and that they know that I’m hospitalized and all the details of my treatment. I do not, though, necessarily have the feeling that the various groups believe that it’s important for me to know what’s happening with me and what the plan is for me. Case in point, I have a regular doctor for diabetes management, since I have no pancreas and we have a plan in place which that doctor (and a nurse) already know and we work around it so my sugars remain in control.... it allows me to shorten discussions about eating certain fruits, for instance. In the hospital, however, that doctor isn’t primary, so it took most of the first week of my stay to convey an understanding of the plan so my sugars were back in control. I was discouraged from calling my clinic while I’m hospitalized, but I finally did and was reassured that there was communication flowing.
So many times I explained that my pre-surgery experience was that I was in pain but able to mostly function, until the day of the crisis 3 weeks ago now, and I wanted to get back there. They are rightly incredulous of the level of pain with which I lived, and they equally challenge my assertion that where I am now is as good as it’s been for a while. So It’s difficult for them, because they are reconstructing my medical history from my original medical team, and developing the progress reports and treatments to pass back to that team post-release. I’d like it if they all met collectively, or at least consulted me more regularly. I’m sure that they do collaborate, don’t misunderstand, but it feels like there are several disjointed aspects at play.
I had several serious-looking, sincerely concerned medical professionals (there’s a gold mine of comedy in those expressions! Especially more so when you can really only see eyes above a mask!) in here asking about my pain medication use, and how it compared to my previous experience. As an exercise for my students, perhaps we could construct a simulation of concerned medical advisors seeking information to amuse, entertain and advise the masses? I get a 10% royalty!It’s obvious to me that yesterday cannot be used in calculating longer term dosage needs and we should maintain the status quo for another day before making changes . I’ve been overruled, and I’m wearing a pain pump which provides constant long term relief. It’s making me feel groggy, which I dislike, and I predict squalls! Perhaps after a day or so they’ll understand what I mean by what is my normal?
Physio was another test. I feel, perhaps unfairly, that the therapist is judging me and failing me as being a torpid laggard who won’t do the work needed to get back on my feet. I have explained that movement increases my pain, and that there are certain moves that I am cautious about. Until this afternoon I was also linked to an IV pole, so my movement was more restrained so I needed 2 people to do anything. I was proud of myself the day that I pulled myself out of the bed with the bed rail only. The therapist applauded, but I felt that she was just patronizing me. After yesterday, I was hesitant about pushing myself too hard, and in fact, I didn’t sit up for long after breakfast but went back to lie down, and that was where she found me. I felt iniquitous for not being alert and seated ready for her, and I hurried to explain that I had been out of bed and bathed, but I went back to rest because of a broken night. I opted to go to the gym, in part to see something further than my room! It was lovely to see outside a window, and the gym overlooks the Experimental farm, so lots of greenery. I’d forgotten that there was something other than grey-green curtains in the world! Anyway, I walked the route between the parallel bars FOUR TIMES!!! I sat down twice during that, but I did 4 whole lengths of about 10m. My legs feel a bit wobbly, but they certainly feel like mine. I’ve got renewed confidence that I’ll be able to walk with Jerry this summer! I dozed on and off all afternoon, couldn’t do much of anything else.
I feel a sense of frustration when I think about the care management team. I am intelligent, articulate, educated and competent, and I felt that I was a babbling, incoherent, puerile dolt when discussing my pain management; a feeling that worsens when I think that the question they’re asking is inaccurate. I mean, when they ask about pre-surgery, do they mean the day before I entered the hospital, or in the weeks prior, when we were trying to figure out the problem? This matters because things aren’t the same! The day when I entered the hospital, for instance, I noticed that my toes felt like I was wearing a pair of thong sandals, and that was unusual for me. Technically, that’s pre-surgery, but that was not the normal situation, because it wasn’t a symptom a week earlier. What was normal was that I could not bend easily so I adjusted my daily routine to get around it. So, to me, “ a return to normal” would be returning to when I didn’t have to adjust my routine and I could bend again. Now if I am this frustrated, how much more so is it for someone going through this in a foreign language? Or in a hostile environment? Or after a trauma? What happens when you are in an unfamiliar environment? Why am I channeling all those policy working group questions? Have I been polluted into an irredeemable policy wonk who now must seek these details before charging in and changing the world with my new titanium spine scattering debris in my wake?
I feel the need for deep thoughts. Deep thoughts and 3am are not the best combination, so I will wish you a good night, the best for a new day, and try to get some sleep. I know that there is sarma! Perhaps I will find some kolačići i kolači i čokolata also. Until then, may you be warm, safe, comfortable and loved.
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