Derivative

I am not easily intimidated. I have been sick a long time. I am used to being around hospitals, doctors and sick people. I am used to reading lab work and pathology reports. I have seen a lot of people pull out of medical crises. I have seen my intestine attached to the outside of my body, emptied colostomy bags, packed my own incisions, accessed my own port. It takes a lot to scare me.

Waking up with a fever of 103.2 two days after dental work scared the shit out of me. It’s kind of funny in hindsight in a morbid way: infectious diseases microbiologist develops tests for bloodstream infections, gets bloodstream infection. But it wasn’t funny then. I am very even when I speak to providers who don’t know me because my life could literally depend on it. I was even that day, but it took a lot of effort.

I was discharged after a few days of antibiotics and continued them at home for another week. I called out of work, a rare instance of sick time rather than working from home, because I was so exhausted and winded that it was difficult to do anything. In 2014, when the shit really hit the fan, standing up was enough to make me sweat, my heart race and blood pressure drop. It felt like that again. Like anything but being in bed was too physically demanding and being awake was too mentally demanding.

In the days after discharge, I lay in bed thinking about deconditioning and POTS and anaphylaxis and what if I had to start all over again? There isn’t a word for what I was experiencing. If we had a word for the crescendo to blind panic, the choking and the blood pounding before you scream, that might be it. What if I got these nine months of improvement and this was it?

The first few days back at work were very hard, my blood pressure was low and my mouth still hurt a lot. I had appointments last week at the hospital and one of my doctors is pretty convinced that I had a true bloodstream infection that just didn’t culture because of the antibiotics. I slept most of this weekend. But things are coming back together.

This past year, it was easy to settle back into a routine, to prioritize certain things over the things I had always dreamt of pursuing. It feels foolish now to have done that. I cannot take for granted that the way I have felt is the way I will continue to feel. If I hadn’t been on antibiotics since the dental procedure, this story could have ended very differently, with my port being pulled and time in the ICU to treat a bloodstream infection and anaphylaxis and months of recovery.

Life is short. All important things are derivative of this. Every lesson is secretly the same.

6 Responses

  1. C March 31, 2016 / 2:06 am

    I’m glad you made it through the the tooth removal episode, and getting some normalcy. I had a bad year in 2014, I cried in pain – allot, the challenge was how to do this while at work. The doctors were relentlessly cruel to me. I guess .. we learn to manage our symptoms or get worse, or hope we don’t, some of us are just survivors, I still don’t know exactly wtf is wrong with me. Have a song, it’s all I have to give.

  2. Susan April 2, 2016 / 9:01 pm

    I’m glad your docs were able to help your body regain its balance. That’s always a worry — and a big one.
    Still, I find it competing with the chronic-anything patient’s perfectly reasonable fears of being written up as a hypochondriac or a drug-seeker. Halfway-decent care already is so difficult to find.
    It becomes a balancing act, in which the most care and skill are needed at the very times when we have the fewest resources to spare. I suspect you may have had thoughts along those lines while deciding that, yes, this time the ER really was necessary.
    I’ve made the wrong decision more than one, I know. Mostly, I knew it at the time, but just couldn’t face the exhausting and in many ways risky challenges of the emergency room.
    One of those times, the recent EKG and Echo results indicate, I may have had a heart attack. I thought so at the time, but I was too weak to call for help — then, I wasn’t, but what if I’d gone in and they’d found nothing? “Anxiety” — they diagnose so many women with that instead of whatever their illness is. And the bill — I didn’t have that kind of money. And my car — I’d end up stranded at a hospital miles from home and from my vehicle, again, and that’s expensive and exhausting. And the diplomatic negotiations with hospital staff — I didn’t have the energy or the patience. So, I rested in the car for a bit longer, lying down in the back and monitoring my bp and pp and hr and ox sat and symptoms. Then I gave up on the rest of the day’s to-do list and went home, and went to bed, and didn’t die.
    Dealing with unfamiliar health care workers didn’t used to be such a struggle, back when I was healthy.

    • Susan April 2, 2016 / 9:02 pm

      Anyway, get well soon — for values of “well” that are reasonably achievable.

  3. Michelle Dellene April 3, 2016 / 8:58 pm

    So sorry to hear about your latest sufferings, but you are so strong and I admire you more with each post here! I finally (I say that, but it only took a month for me) got a diagnosis of MCAS and found out my older brother has SM. It’s a hard pill to swallow, but we will trudge onward. I so appreciate your blog and your way with words. Just wanted you to know. 🙂

    Hugs from Yellowstone!

    Michelle Dellene

  4. Cindy Maak April 4, 2016 / 10:10 am

    Lisa, I just got around to reading this. I am so sorry that this has happened to you and am sending healing thoughts your way and gentle hugs.

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