rekindling the spark

People with a chronic, as yet undiagnosed illness know this situation all too well.

  1. You go to a doctor, the doctor takes an interest in your troubling condition.  The doctor may even offer some theories/hypotheses about what is going on.
  2. The doctor orders some tests.
  3. You have a follow up appointment.  The tests are inconclusive or negative.
  4. The doctor, at this point, may refer you to a specialist (repeat steps 1 through 3) OR doctor skips straight to step 8.
  5. Without answers or treatment plans, you continue to feel shitty OR 5b. you try a treatment and it works but then stops working OR 5c. you try a treatment and it makes everything worse OR 5d. you try a treatment and it makes no discernible difference.
  6. You make an appointment to see doctor.
  7. Repeat steps 1 through 5 OR
  8. Doctor shakes head and shrugs shoulders/can’t remember your name and complaints/dismisses and invalidates your symptoms because no answers can be found/verbally abuses you.

Yes, you’ve hit the end of the story.  It often seems at this point that all that is left for you is to cycle through the above steps with only minor procedural variations.  And I say it seems this way based on my own experiences and based on the experiences of others.  But because I am a hopeless idealist, I keep thinking….

There has to be another way.

There has to be a way to reignite the interest that was shown in step one.  If for nothing else, then at least for plan to treat your symptoms and help you find ways to lessen their impact on your life and livelihood.  E.g. offering to work with you to request accommodations at work so you don’t lose your job trying to accommodate yourself without official documentation to back you up or failing to do your job because key components of it are not doable without accommodations.

To put it like this seems to imply that there should be some magic words, some single possibly simple way of redirecting your doctor’s attention at least to the issue of your health and wellbeing in the context of continuing, very real, life altering symptoms….if not to continuing the quest of finding an answer.  But so far, I just can’t think of what that is.  Which makes me think that I am deluded.  Which in turn pisses me off.  Because I don’t think it is impossible in a healthcare context which emphasizes patient wellbeing, which values and allows for (if not promotes) careful review of cases, results, and notes rather than reducing consultations and care into the medical equivalent of speed dating.

While I personally think I have a primary care who would be willing to try, I honestly don’t even know how to ask for it.  I had been thinking of making an appointment to try my hand at refocusing my PCP, but I was lacking even the start of a script…e.g., what to say when the secretary asks what the appointment is for.  I put it off.  And off some more.  And then in the last two weeks, I started having some troublesome crap.  Racing heart rate that made my head pound – literally, my teeth would clatter if I didn’t clench my jaw, and my (one) ear ring in a throbbing buzzing tone, chest pain, and shortness of breath.  I tried just taking care of it on my own.  Resting and sitting or laying down when it got bad, drinking more water since I thought maybe I was just dehydrated.  But it persists.  I lie in bed at night and feel like my heart is racing and straining against a too tight hug, like something high and deep in the middle of my chest is pressing down and in and choking off the normally free and relatively imperceptible motions that make up the mechanics of my chest’s innards – and I’m not freaking out or panicking while this is happening (otherwise I’d say it’s an anxiety attack).  Rather, I’m bothered, annoyed, and frustrated by the pain and discomfort.  And concerned.  So I called.  “Well if you’re having chest pain you need to go to the E.R.”  “Oh I’m not having it right now,” I lied – because I don’t have five hours worth of time or patience to sit around on a monitor that doesn’t work while the staff work me up as if I were either a 65 year old obese man or an anxiety prone 40 year old type A woman (my experience is that these are the two common schemas for dealing with presentation of chest pain and s.o.b. in the ER…were I younger and possibly not white, then it would likely open up the possibility of a third stereotype…uh I mean protocol, which is “possible drug user”).  I’d get a CBC, vital signs while laying down in a bed, and at best a well intentioned lecture about anxiety and stress.  Possibly also smoking.  So I lied.  And I have a sick appointment for Monday.  And I will try like hell to respect the constraints of the medical visit, i.e. not to try to direct him to all the old, long standing shit and to just focus on what’s up now because I respect his time and I don’t want to turn what will inevitably be scheduled as a relatively short, contained visit into an attempt to revisit EVERY damned trick my body does in it’s chronically treacherous state.  I’ll leave that for another time, a time when I have more energy or more motivation to go a’trailblazing into the unexplored territory of the “let’s revisit this shit and try to come up with even a set of practical steps if not a comprehensive plan” appointment.

Ok, so Monday…step one…

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2 Comments

  1. queenofoptimism

     /  February 13, 2011

    Can’t wait to hear how Mondays goes! Stick to your plan and know you are supported!!

    Reply
    • Thanks Queen. It went well. Quick, well relatively speaking. I’m “obstructed” and my heart rate’s elevated. Lol, knew this already but yes it’s clinically confirmed. Not sure what the test for obstruction was exactly, breathing and exhaling into a metered device. Guy likes his gadgets. He was thinking of sending me home with an albuterol inhaler but said he didn’t love the idea. “What, you think it’ll make me tweaky?” I asked. “Yeah…” he said. So no inhaler. But got an xray and shitloads of bloodwork. Always shitloads of bloodwork with this guy. “So what are we doing for the flushing?” he asked me. “Nothing, we’re letting me suffer with it” I said. That also accounted for some of the shitloads of bloodwork. This poor guy. I told him that out of respect for his time, I was ok if he didn’t want to revisit the whole other set of symptoms right now and just work on the chest thing. “I can make a nice big long appointment with you to talk about the other stuff later,” I said. And so we will. And i have permission to do the various 24 hour urine things without a caffeine fast. “If it’s negative, it’ll be negative. If it’s positive, we can go from there”. I do like this doctor.

      Reply

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