check-up

Yesterday I went to my doctor for my first follow-up visit after he diagnosed me with fibromyalgia and prescribed Cymblata. Before I get to that, though, let’s talk about the importance of trusting your doctor.

All told, Ashley visits five doctors – all of them specialists – regularly within a four-month span. There’s her cystic fibrosis team: doctor, dietician, social worker and concordant nurses. There’s her transplant team: doctor, nurse practitioner, and coordinator. There’s her endocrine guy, her diabetes guy, the kidney guy. Between all of these are trips to the lab for blood-work of all varieties, some of which go to this doc and some to this doc and some to Pittsburgh…And there no one to coordinate between them, except for Ashley. And me.

Over the past few years, as I learned more and more about what it means to live and love a post-transplant person, I began to realize how important it is that she trust her docs. If the nephrologist tells her to drop her Bactrim to once every other day from daily, she has to trust that – even though that goes against what her transplant doc prescribed – she has to trust that he knows what he’s talking about. And when she reports that change to her transplant team, she has to trust that they’ll watch her blood levels and tell her if she needs to change it again. It is wildly complex and the information at times feels like a vortex caught in a sandstorm. And all there is to go on is that they trust her (and me) and we trust them and we question each other (us and the docs) when necessary.

In learning all of this, I realized I didn’t trust my own doctor. When I first started seeing her maybe ten years ago, she was great. She never pestered me to lose weight. She always told me I was young and there was time. When my cholesterol edged up a bit too high, she gave me the chance to fix it myself instead of putting me on a script I’d never be able to get off of. But over the years she began to focus on another aspect of her practice. Over time I saw her less and less. Over time I felt she – and her office – cared less and less about any patient who wasn’t part of her new medi-spa practice. Then came the point when I realized I hadn’t actually seen her in years because I was always getting the NP. And this was despite my complaints of all kinds of pain and specifically asking for the doctor to help me.

So it was time to change doctors. I found a new guy who, despite his tendency to call me chief a lot, treats me like a person, and like an intelligent person at that. Once he learned of my love for odious medical terms, he started tossing them out at every turn, not in a show-offy kind of way but more in recognition of who I am.

Yesterday – after about a year of seeing him – I realized I’d made a good choice.

When he came into the room I knew the first question would be about the Cymbalta. What I didn’t know was that he would ask Ashley, not me. “So how’s he doing?” And with that question, asked to the right person, he fully won me over.

Because sometimes you simply can’t judge yourself, and starting an anti-depressant is one of those times. He didn’t ask about my pain-level first, that was the other thing. He wanted to know how I was handling the internal rewiring I’d been dealing with for the past six weeks. And he asked the person best poised to answer honestly.

Ash told him the truth: “He’s definitely more…mellow. Calmer.” Which is true. I’d decided before the appointment that even if Cymbalta weren’t reducing my pain I’d ask him if I could stay on it. I feel like my old self, the one from about ten years ago when I took things in stride and maybe didn’t always have a sunny outlook on life but was able to let the negative stuff lie where it slept. I feel more connected to the other living creatures around me…not that I like them necessarily, mind you. I feel less like an alien or Keanu Reeves still trying to get a grasp on human emotion.

Then we all talked, about my pain-level and about the side-effects. I’ve dealt with every side-effect listed for the drug except the one about suicidal thoughts. Which is great. I’ll happily deal with the excess sweat (hyperhidrosis, he informed me) and dry-mouth (xerostomia) if it means I think about suicide less. He told me the side-effects will eventually die down and continued my prescription. He even gave me a ton of samples – about a month’s worth – for free. What a swell guy, right? He told me to come back in six months.

So everything’s good on the fibromyalgia/Cymbalta front, which I already knew. But again I want to point out how important it is that you trust your doctor. If you don’t, I recommend you find someone else. Maybe it’s not quite a life-and-death situation, but it’ll do a lot to improve your outlook, whatever your situation.

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2 comments on “check-up

  1. I had a doc I liked but, after a problem with medication that almost cost me my life, I switched. Got a doctor I sort of liked. He got me off all kinds of meds and started treatment that was helping. Problem was, when the Cymbalta stopped working, he refused to try anything else. The last time I saw him was in December when he refused to even consider a service dog for me even after I proved to him that one would seriously benefit me.
    I went back to the doctor that I had before. I now have a service dog and, for the first time in 5 years, am able to leave the house other than to go to the doctor. If your doctor doesn’t trust your opinion and acts like you’re an idiot for even suggesting an alternative solution, CHANGE doctors. They are not Gods and some are so stuck on themselves that they cannot admit when they are wrong.

    Trust and communication are paramount to good healthcare.

  2. Reading this made me smile. I got a new GP when I moved across country almost three years ago. He diagnosed fibromyalgia within six months but I disregarded it and pursued specialist opinion. I still saw my GP for all other health concerns – he is really fabulous – but nothing pain related.
    My Rheumatologist last week, after nine months of testing, poking, probing and investigations diagnosed Fibromyalgia.

    Turns out, my GP is far more fabulous than I ever recognised. He nailed it from the very start.

    Good luck on Cymbalta. I just started Endep. Fingers crossed!

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