Some days I’m just not as cool as I would like to be…a patient’s guide.

I’ve been poked, prodded, xrayed, cat scanned, operated on, radiated, examined and infused. I am guinea pig. I am a patient.

Once a month I spend a couple hours sitting in a foam green reclining chair having an immunosuppressant shot through my veins. The nurses find a vein, we both hope for a one-poke success rate and we get to the business of giving me a—wait for it—$14,000 medication in a small baggy the size of a sandwich Ziploc.   Like having a Hyundai for your veins. It chills me a little so I take advantage of the warm blankets they have, open some carefully chosen snacks and entertain myself for the next 2 hours.

Sometime a close friend comes. A small, selective group of individuals have been allowed to observe this, to be welcomed into that part of my life. I like it when they come.   I like pulling back the curtain on that part of my life. It is the part they have only heard me reference in conversation. I like when they hear one of the nurses walk by and yell, “Hey Hot Pants!” to me.

Today I was solo. Solitude in the hospital is often interrupted by bells in the hallways, nurses conversations at the stations outside my room door and the alarm bells that go off on the IV machine’s mechanics. That’ll give you a jolt. When people say, “I’m so sorry you have to do that.” I point out that I get to sit quietly in a chair for 2 hours and pretty much not move.

Forced Be Still time.

And then there are days like today.

Have you ever wondered what it would be like to have someone ram a bar of soap under the surface of your forearm? Ever wondered what it would feel like to notice that your wrist was suddenly aching more than the typical irritation of where the IV goes in? I know.

I pulled the gauze and tape back, trying to get the tug and pull on my skin to ease, hoping that would help the ache. When I pulled it back, there sat a lump on my forearm, right near my wrist. It was the size of a bar of soap. My eyes bugged and seen it been there me quickly turned to freaked out me.

I grabbed the button to call the nurses and pressed, hearing the beep start outside my door. 2 nurses came in and saw the enormous lump on my arm. They seemed unfazed by it, calling it an infiltration and explaining that the medication apparently had escaped my veins and was now making the lump in my arm. Did they not see the grotesque bulge? Would it have killed them to summon some horror or gasp at the weirdness? Something? Something to act like it was a little bit worthy of a small freak out?

Next time I’m going to heed the self-help books and ask for what I need. It will sound something like this, “Nurse…I need you to say, ‘Holy crap, that’s a biggie. No wonder you panicked and knocked the empty Coke can off the chair’s tray. Let’s just put some heat on that and give it some time to go down.’”

Either that or they could have opened with, “That is an alien baby inside there so we’re going to need you to put this heat on it to make the birth easier.”

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The Ten Essentials…a survival guide

The Essentials

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As a former backpack trip leader, I’d go over the packing list with my teen participants before we headed out into the Olympic National Park.  One of the things we would go over was The Ten Essentials.  These are things that are generally recognized as the must haves of the camping/hiking world such as a knife, compass, first aid kit and extra food.

It is how you survive if the going gets rough.

When I think about The Ten Essentials of my regular life—my life that has integrated with my healthcare—I can think of a different list of must haves. 

1. Warm Blanket– These are available in the hospital during treatments.  The warm blanket wraps up anything that is freaking you out, stressing you out, pissing you off in a comforting sheet of warmth.  It is without a doubt the most nurturing object in a hospital.

2.  Nurses- Whether it is their attentive care or the smart ass remark they make, nurses are the human version of the warm blanket.

3.  A sense of humor-some of the things that will happen with your doctors will be hilarious.  Don’t miss that because you are so busy “being sick” that you can’t laugh at the insanity that you life has become.

4.  Friends who remember– These are the little things.  My best friend tries very hard to remember when my doctor appointments or infusions are.  She doesn’t come to these with me, but she tries to text and check-in.  Friends who remember are essential while you are trying to act like visiting the hospital this often is “normal.”  Which it is not.

5.  Perspective– Remember that other people often have it worse than you do.

6.  Permission-Remember that even though #5 is true, that doesn’t make your suffering less valid.  Pain is pain.  Struggle is struggle.  You are allowed to have a crappy day, even if someone else had a crappier one.

7.  Music-Have something to listen to that makes you want to a) sing along and/or b)dance.  I like musicals, but whatever revs your engine.

8.  “I’d still like you” people–  You should have people who like you even if you are venting, ranting, swearing and storming.  These are the people who will not judge you when you pitch a fit.  They will be glad you called them.  They will not make you feel like you need to say, “Sorry I went off about that.”

9.  Something good to drink-Coke Slurpee, coffee, tea, wine, whatever.  Have something you enjoy.  This drink should be the warm blanket of the beverage world.

10. A flashlight-cause that’s always a good idea.