There Is No Such Thing as the Perfect Patient

screen-shot-2016-11-01-at-11-00-48-pmI’m almost out of the woods at this point. I had a follow-up appointment with my infectious disease doctor. A part of me was hoping she’d tell me that my wound had healed enough to put in the new port…but I knew that was unlikely and she gave me a flat out “no” the second I asked.

“Give it another two or three weeks,” she said. It shouldn’t seem like an eternity, but it does. “Your blood test came back and the infection is still there.”

I swear I felt my stomach just drop out of my butt.

“But that was taken before you finished the antibiotics, so we test again in seven days and we see how you are at that point.”

I walked out of the office and drove home, thinking about what a crazy year it’s been.

Easily my sickest year ever.

Worse than that time I was in the hospital every other week because of the gastroparesis (before we figured out I needed like a gallon of IV fluid for my stomach to function.)

I thought about the uncomfortable midline cath in my arm.

And the freshly irritated skin underneath the new set of bandages the nurse had applied over my wound after the doctor wanted to see the progress for herself.


I thought about the huge disappointment that was the trial of titrating off of the Desipramine. I thought about the smack-in-the-face neurologist appointment where I was practically laughed out of the exam room when I talked about wanting to one day get pregnant.

And then I thought about all the people who have been following my blog this year and watching this journey unfold.


I thought about their kind comments and their pats on the back about me being brave despite it all.

screen-shot-2016-10-10-at-10-21-05-amAnd I thought that you should probably know that I’ve had panic attacks every night since I left the hospital. And that every time I feel my face flush and have to take my temperature I’m frozen with the fear that it’s going to be another fever, that the infection has gotten worse. That when the home nurse packed my wound with some kind of iodine’d gauze I had to rip it out as soon as she left because the smell reminded me so fiercely of the hospital that it was making me nauseated.

You have to understand that my fortitude isn’t always some kind of “bravery” and it’s definitely not sucking it up and not “reacting” to the needles or the pain or the fear of what’s about to happen. It’s just knowing it’s going to happen. It’s going to suck. And kind of just knowing, well, you’re going to endure it anyways.

I cry. I scream. I ask for my mom or my husband.

I ask for the pain meds instead of always “toughing it out.” I swallow 14 pills a day, but every once in a while one will get caught in my throat and I’ll spew a mouthful of water all over my laptop.

It’s a learning process. There is no such thing as the perfect patient. Or the naturally fearless. Fearlessness comes from facing down the thing that you can’t get away with avoiding. That you decide you don’t want to avoid any longer—because life without facing it is somehow worse.

Being afraid is always the worst type of pain.


What’s helped you overcome your “patient” fears?



13 thoughts on “There Is No Such Thing as the Perfect Patient

  1. Erin

    Even if you’re not a “perfect patient” I think you are very brave. Knowing that you have panic attacks and sometimes cry for your Mom doesn’t change that a bit. You’re still a badass. As for me, I go through all of the anxiety and worst-case-scenario thinking, but in the end I just want to know what’s up and get it over with. The fastest way to get through the fear is just to barrel straight through it. Now, that’s with procedures, testing, etc. What I have far more trouble overcoming is dealing with the doctors themselves. I have had such bad luck with doctors (I have MCAS and POTS, so they all think I’m crazy and weird) that I really dread it and have to force myself to go.

    The link is to an image of one of my favorite quotes that helps me get thru the crap with my health:
    “Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying, ‘I will try again tomorrow.'” – Mary Anne Radmacher
    I never feel brave doing what I literally have to do to survive… But, in a way, all spoonies are brave. You’ve had a crazy tough year, and you’ve gotten thru it bravely! Being brave doesn’t mean being flawless and unafraid, it just means doing it anyway 🙂
    You’ve never stopped fighting for your health and advocating for yourself. You’ve never stopped searching for the answers you need. You haven’t locked yourself away from the world. You take the medications your need to take to manage your health, and you follow your treatment plans. You love your husband and doggy and family.
    You are very brave. Even if you can’t see it. You are brave.

  3. You are one of the most talented writers on the entire Internet!

  4. I’ve never ever read anything better!

  5. This was truly remarkable. I really like what you did with the curtains.

  6. Save up your money for a rainy day.

  7. Don’t ever quit blogging!

  8. Where do you buy all your hardware?

  9. Don’t forget the grilled onions!

  10. Way to go Edward. This blog is amazing!

  11. No one can ever say this site is boring!

  12. Would you like some popcorn?

  13. These two are some real messy eaters!

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