Open Letter to my Diseases . . .

Dear Kidney Disease, Heart Disease, Hypertension, Anemia and friends . . .

We’re cool, ultimately.

Not because I am happy to live with you all but because I had to make peace with you, since we met (in my teenage years), or else I would have gone crazy by now.

I am angry with you because you’ve limited some of the things I would have liked to do with my life. Things I would have liked to try.

I didn’t consider having kids because I was afraid of what being pregnant might do to me physically. I also considered what would happen if I died and my kids had to live without me – as I lived without my Mom after her bout with her disease. If you happen to see Lupus, respectfully tell it I say, “kiss my ass”.

For a long time I didn’t believe I was whole as a person because of you. I believed I was broken. You prevented me from pursuing some goals . . . perhaps even prevented me from pursuing real love in my life. Luckily I see myself as whole now.

You’ve put me through some physical pain. Some seriously painful stuff. I have a few memories that can still make me wince. I really hate you for that. Just being honest here.

You’ve also put me through some terrifying and traumatic moments. Procedures. Ambulance rides. Weird heart palpatations in the middle of the night. Vague death-related uneasy feelings. Terror. I didn’t appreciate that. Even now I have a stomach ache that is almost tear-worthy.

You’ve robbed me of time. Doing dialysis. Sitting in hospital waiting rooms. You’ve certainly robbed me of professional-earning time. My financial situation feels your impact. Thanks! *sarcasm*

Having said all that. (And I went that deep because I wanted to be honest).

In a weird way I am thankful for you.

*sigh*

You’ve taught me that I am pretty damn strong.

You’ve taught me that I am courageous.

You’ve taught me to be thankful for good times – when I am well. Even well-ish is good enough.

You’ve taught me to put your presence in perspective and see myself as being perfect in my way, despite all of these diseases. You don’t get to define who I am.

You’ve taught me to fight to have the best life even under difficult circumstances.

You’ve taught me to be as fearless as I can be.

You’ve taught me not to take time or energy for granted.

You’ve taught me how to reach out to people for support. That I can not manage you all on my own.

You’ve strengthened my relationship with God/universe.

You’ve taught me to be grounded in faith and to make time for my spiritual healing.

You’ve taught me to savour life more. And I work on that every day.

You’ve taught me to prioritize my physical healing . . . you’ve made me a “gym rat”.

You’ve taught me to laugh as much as I can. And to try not to take life too seriously.

I know I am a better person because I’ve had you.

You’ve given me life and purpose in the goal of sharing my experiences with you as a patient advocate. You’ve given me experiences to write about; to speak about; to advise about. An important part of myself to share . . . with the goal of helping other people who live with you too. And helping improve medicine by sharing my perspective of living with you all.

I would not wish you on my worst enemy but at the same time I am thankful for you.

I have learned to love you all for what you’ve taught me and brought out of me.

You have been part of my toughest and hardest learned lessons through time.

Thanks?? Yes, I guess it’s THANKS.

Love from your “frenemy”,

Karen Nicole

P.S. Please thank ePatient Dave, Dave deBronkart, for this letter. He inspired me to write you.  https://karennicolesmith.wordpress.com/2015/06/19/messages-from-a-powerful-interview-with-e-patient-dave/

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