Sometimes, medical diagnosis can be fairly easy.
While the requisite description of your symptoms is generally step 1 in the process, personal medical history and family history play a very important role as well. But once in a while, in this modern age of medicine, there is a test or a scan that can determine with a reasonable degree certainty what it is that ails you.
Sometimes, medical diagnosis is hard.
Description of symptoms is generic - tired, nauseated, feverish. Personal and family history are not helpful, either because there is genuinely nothing there, or because history is withheld due to lack of knowledge or lack of willingness to disclose.
Sometimes, it feels impossible. It's at this point where I've been living life for the past 16 months.
In the law, if you are facing a situation that feels nearly impossible, that you do not have the training, experience, or education to handle (or even the time, patience, or emotional fortitude) you can hire a lawyer. Sometimes this is challenging because of finances, and I can write a whole separate entry about why lawyers can and should charge high fees, but you hire a lawyer to represent you. That lawyer literally steps into your shoes for that situation. You go into their office, tell them about your legal problem, and for a fee, your burdens become their burdens and they work to solve your problem.
Sometimes, your problem is not going to have the solution you wanted. Maybe you committed a crime and the evidence against you is damming. Well, then you are probably going to jail. But that lawyer will still to do everything they can to make sure that the evidence against you is sound, that the conviction against you is only upon legal and competent evidence of your guilt beyond a reasonable doubt, and that the sentence you receive is fair and just. They are your ally against what may feel like an insurmountable challenge, and they help guide you to the other side.
Medicine does not work this way. Although we still pay doctors exorbitant fees, they often spend only the minimum amount of time with a patient, concerned only with what pains them at that moment. While they ask about history, medications, surgeries, etc., they are really just there to solve one problem - the one you came in with. I am including primary care managers/providers (PCM/PCPs) in this calculus as well - the one provider who should really be the one putting the pieces together.
In fact, I came in to see my PCM after my ER visit a few weeks ago. I had woken up in the morning and my hands and arms were tingling, like the pins and needles you get when you are losing/regaining feeling in your foot after you've sat on it for too long, for example. Thinking maybe this would pass, maybe I just slept wrong, I didn't think anything of it, until 4 hours later when I went to physical therapy and it was still happening. It lasted about 8 hours that day before it subsided.
I could not get in to see my PCM that day, but I got in first thing the next day. I was exhausted, frustrated, and ready to give up. This was not the first numbness and tingling that I had experienced in the previous weeks, and he knew that. I had been seeing him quite a bit recently for many other issues, and he knew that too. When I expressed my exhaustion and frustration too him, begging for some insight into what is wrong with me, he assured me that each of my individual issues is being treated (they aren't), and then told me that the matters are probably not related. He then proceeded to tell me that, despite the tingling and numbness in my legs and feet that had been happening for about a month, and the tingling on the right side of my neck that had been happening for about a week, that what I was experiencing in my arms was probably carpel tunnel syndrome and gave me wrist braces. Needless to say, I thought that was bullshit and have not been wearing them.
Where the hell is all of this going? I'm so glad you asked.
Because I cannot go and simply hire a doctor to assume my burdens (unless you know someone, in which case, please PM me), I have to continue to bear them myself. I have to take charge of my own health care and be my own advocate. I will research and I will push as if this were a case I was trying to solve. Because the alternative is to continue to take handfuls of pills every night and hope that someday, someone will care enough about my symptoms to take a step back and look at the bigger picture. To really do everything they can to try to figure out why I feel so terrible all of the time. Until then it's just me.
And maybe you.
I am going to blog and post on other social media about my symptoms with the hashtag #medicalmystery. I've already started doing this, but I'm also going to try to give you some background about my symptoms and when they first started. If you want to know about any labs or imaging I've had done, I will tell you. History? It's yours. If you have an idea, think I should get something done or talk to a particular person, put it out there. I am officially crowdsourcing this problem, because I know enough to know that I am not a medical expert by any means, and that knowledge is power.
Thanks for sticking with me through all of this and helping me solve the #medicalmystery.
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