Do you ever stop and think about the start, stop, step backwards and altogether halt nature of chronic illness and healthcare? I was laying here trying to sleep musing over a few things provider related really thinking about upcoming appts, decisions, etc as I often do - driving and at night when I should be sleeping are often the times I think the most about this kind of things. I was just thinking about how things that happened years ago and have little relevance to current healthcare still have such a promiment part in overall thoughts while those things that to me would seem more important bc they are currently happening or changing seem to get little time. It is this odd phenomenon I find in my healthcare - some providers want to find an answer when either an answer no longer matters or when another healthcare provider has seemingly found a answer that equals a relevant solution and for which the answer made sense and gave a solution. Why is it we as a society are so stuck on what happened yesterday that we fail to realize what is going on today? I know I sound alot like I am rambling and really in my tired mind I probably am it just is something that really is an unanswered question to me. I feel like alot of appt time with some really good providers is spent with them trying to remember what has been and thus taking what little time there is away from what needs to be and I dont quite get this over and over and over again thinking I suppose. On the other hand there are providers who are cautious but inquisitive and who are willing to look at things from different perspectives and this is really the kind of care I think all patients especially all patients with chronic illness need. It certainly doesnt mean the other providers mean any less to the overall care just that less seems accomplished at those appts vs at the appts with the few who can move on while still not neccessarily forgetting what was if that "what was" should need to be dealt with at some point again. It's almost like a crapshoot to find a provider that blends with ones own personality, who meshes with the patients own thinking and who is receptive to what an capable patient knows about their own disorder I suppose. One who can rattle off the smallest and largest issues, who can tell you the obscure things about your disorder and who is willing to think outside the box and still be a decision maker even while not necessarily being an expert in the disorder with which their patient is diagnosed. Again as a patient myself with an extremely complicated disorder I dont expect every doctor to understand everything about me but I guess I expect at the least for those providers to atleast be willing to hear me out, listen to my experiences over time and be willing to accept what sometimes seems unacceptable in the medical world because in my case MPS is not 'normal' and thus defies normal standards. Partnership and equal listening really are key to moving on and functioning in healhcare...
I think it's a little like trying to change yourself to someone elses standards so they will like you - in other words become a cookie cutter of what our world views as acceptable. Ive always felt probably bc of how I was raised with 4 siblings and taught to be independent and independent thinking that I am the person I am and while I dont have to purposely try to alienate people I also should stay true to who I am and those beleifs I have been taught. While ive learned many lessons in keeping opinions to myself there also has to be a way for people to be able to share their own experiences and be a part even if their experiences havent been the 'mainstream' way... A friend of mine who also lives in the MPS world although with a child and I often talk about this, how with these disorders you would think there would be more all around openness and acceptance to what others think but when it's not within the realm of what people "know" people often refuse to "see". Ive never been the type to reach out and stay close with alot of people and in this world I think that and having an opinion are the 2 axes that grind a stone for many people. I really believe in our society we need more people willing to stand and not be bent to others wishes, we shouldnt change so someone else sees us as ok but instead stand for what you believe in, represent what you know to be true and judge not what others think because you in fact are the only person living in your body and the others judging know no better because they cant possibly see what your everyday life is like. We all are guilty whether we admit it or not of perceiving someone one way when in fact they are truly a very different person because we simply didnt take the time to listen, look beyond the cover or be open.
I will stop rambling non-sensically now and sign off for the night... will try to update after the Ortho appt at some point tomorrow or over the weekend.
Good night,
Erica
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