Grown-up Tantrums Have Their Place

Sometimes I don’t take my medicine as an act of defiance.

Sometimes it is a grown-up version of a tantrum.

I rarely forget to take them.

When I don’t take the pills it is almost always on purpose.

           A screw it..sometimes a screw you. 

           I look at the pills—sometimes I glare—their ugly orange plastic tubes, mislaid warning stickers and fluctuating pill levels and think about how I just don’t feel like it.   I resent them.  After 6 years of daily medications I can’t tell you how many days I haven’t taken my medicine but I’ll admit is more than I’d like to admit.

I’ve never charted it but I bet it is directly connected to my hard days. There is something satisfying with putting a cherry on top of a really lousy day by saying, “Screw it. I don’t care. I’m not taking them today.”

Sometimes if I am feeling especially irritated, frustrated, or hurt by someone that’s a good reason too. It’s self-sabotaging, but what can you do?

Take your meds.  You say.

You take em. I say.

Boils, Blood and Baffled…and we’re just getting started.

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“Well let’s see what’s going on” the doctor says.  She is older than I am, likely in her 50’s and warm.  The fluorescent lights brighten the windowless room.

My dad is quiet in the chair to the side while I sit on the exam table, my legs dangling beneath me like a kid on the bars at school.  In a t-shirt and sweats, I look like I’m hanging out.  I look like I’m fine.  I wonder if the doctor thinks, “She’s 36, why is her dad here?”

“Well…” I hesitate.  Then I scoot back so my legs are straight in front of me and I carefully pull both of the pant legs of my thick cotton sweats up to my knees.

“Oh my.”  She says. I’m not sure if this is what doctors are supposed to say, but I appreciate her honesty.  I am glad she doesn’t hide her shock like other doctors might.  Her oh my validates what’s happening.  It gives me a little doctor street cred.

It acknowledges I am not imagining how hideous this is.

From the knees down, my legs have 20 boils all over them.  Each one to two inches in diameter and easily ½ an inch off of the skin.  They are full, deep red and raw from the blood beneath the surface and they hurt like hell.

When I start to cry around her later from the cumulative stress of the past 7 days of this, she comes over to my side and hugs me.

 

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.

I’m Right Where I Left Me

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Coming Back

Being back on the rugged Washington Coast at the ocean after 6 years, disease, an oxygen tank and a life overhaul was like wrapping up in a comfortable warm blanket.  Walking the beach, a grin glued to my face, I looked up at the trees on the ocean. These trees are badass.  They lean recklessly into the wind.  Their branches sparse and thick.  Not a place for spindly branches with the protection of the forest. Trees on the ocean need to be able to stomach the wind and the salt water and be the first line of whatever came off the Pacific.  These were Don’t screw with me trees.  These trees were tested.  They weren’t as full or even as the ones further back in the rainforest.  But they had seen worse.

Me and those trees.  Worn and beaten. A little worse for wear.  Still standing.

What would’ve helped

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No one will ever tell you how to cope with getting a serious illness, not even your doctors.  You think they will know, but they won’t.  It is unrealistic to think they would.  Remember, they went to medical school, not social work school.  But the poor souls are saddled with you and me and whatever illness we bring to the exam table.  When they ask how you are feeling, you may be tempted to answer, “Isolated and wallowing in an identity crisis.”  Resist this urge.  This is not their area of expertise.   For all you know, they’re wallowing too.

They do want to help though.  They want to give you the drug or the surgery or whatever and figure out the problem so that you won’t have to visit so often or maybe never again.  They want to figure it out.  But it isn’t always that easy because sometimes you are both trying to figure out two totally different things.

They will give you medication to try to solve or treat certain problems.  Those drugs will have stickers on the bottles to stop you from “taking with milk” or “don’t operate heavy machinery.”  These are helpful tips.  They are the “how to’s” of drugs.

I wish everything else was that simple.

I wish illness came with warning stickers.  Do’s and don’ts.  The kind of things that go beyond the physical symptom to the day-to-day experience of living with a disease.  I wish I knew what to do when life flips upside down.  In all of my appointments, tests, emails with doctors, exams, bloodwork, I wish I could have had a guide.

Yes, a guide.

A truth teller.

A sage.

Someone who could roll their eyes at you, smack on some gum and put their arm around you while calling you “Hon” on the rough days.  I think my sage would be older than me and a cross between a Flo from the tv show Alice (sassy waitress) and Tyne Daily when she played the insightful, seen it  and been there mom on Judging Amy.   My guide would be part Wise Woman and part Salty Broad.

I longed for someone to tell me how to handle all of this, to make sense of things when everything was out of my control.  A guide could have helped me to know how to ingest everything from less than satisfying doctor’s appointments to the waves of emotion that hit when I was exhausted from, well, everything.  A guide could have helped me to see what friends were helpful and what friends were not—rather than having me run it over and over again in my brain trying to make sense of it.  A guide could have helped me navigate the waters of identity that get so muddied up when suddenly your old life is inaccessible and you have this new, unpleasant and unwanted life.  A guide wouldn’t have been threatened by my tantrums or by my tears.  They would have known It’s all a part of the process hun.

I imagine my guide’s name would have been Pearl  Something practical and real.  Pearl won’t bullshit you.  Pearl will know how it is and won’t be afraid to tell you when to pull your head out of your ass and deal.  Pearl also would know that Sometimes honey, you just need to mourn the life you left.  She would tell me when my brain was spinning in appointments or after—which is usually when it spins—when I am finally wrapping my head around whatever new thing the doctors want to do.  New equals scary.  Even if it is not.  New is uncharted territory.  New requires adjustment.  Pearl would remind my brain when New freaked me out that we have been here before.  New fades and then it is ok.

And even if it isn’ t ok, then it is familiar.