A Chronic Pain Patient’s Christmas Wish List

Welcome! If you are here from The Mighty, you may want to catch up on my story from the beginning, starting here

This morning, on his way out the door to Oxford Circus, my husband asked me the loaded question: “What do you want for Christmas?”

I thought about it for about .005 seconds and replied, “No more pain.” I’ve suffered chronic pain for over three years now after a surgery that went awry. No one can tell me if it will ever go away; no one has a cure. My pain suddenly disappearing would be nothing short of a Christmas miracle. But it’s unrealistic. So I decided to expand my Christmas wish list.

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I have all the stuff I need. No jewelry or gadgets under the tree for this girl. I’ve also got a loving husband who understands me and supports me, and two amazing daughters who will one day conquer the world. All I need are things that money can’t buy. But here they are anyway.

  • No more pain.
  • Okay, something more realistic: less pain. Especially in the mornings when I’m trying to get the kids off to school. Or at 3 in the morning, when I’m trying to sleep.
  • How about just a short break from pain? Like a holiday? Just a short hiatus (preferably in the Caribbean) so I can remember what it’s like to feel normal.
  • No more drugs.
  • Or, more realistically, better drugs. Drugs that don’t make me sleepy, nauseated, grumpy or have weird bursts of energy at inopportune times (like at 3 in the morning, when I’m trying to sleep). Drugs that don’t make the pharmacist treat me like an addict.
  • Pharmacists that don’t treat me like an addict. I have enough going on, thank you very much, to be given the third degree by a old crank in a white coat who doesn’t even know one tiny part of my story. I am not the drugs I take. I am a patient, just like anyone else. If I had a bald head and the distinct pallor of a chemo patient, would you treat me like this? Just because you can’t see my pain doesn’t make it any less real.

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  • Energy.
  • More realistically (maybe?), a clone of me. The science is up to par in our grandly technological world, right? So let’s make a clone of me. One that doesn’t have pain and can toss her kids in the air, play soccer with them, cook amazing, healthy meals for breakfast, lunch and dinner and doesn’t tire. One that has the energy to talk through her day with her husband at 9pm instead of flopping into bed and watching Netflix. And can we make clone-Jenny’s hair a little less frizzy, please?
  • Friends who understand what I’m going through. When I say “I’m in pain,” I don’t want a recap of the latest study on yoga reducing inflammation or how you have a great naturopath. I want to hear, “That sucks. That just really f-ing sucks, my friend.” I want a friend who will watch TV with me when I can’t bring myself to leave the couch. I want a friend who will understand when I cancel for the umpteenth time because I don’t feel well. I want that friend to stop by with chocolate chip cookies and tell me that everything will be okay. Even when everything goes pear-shaped and is far, far from okay.
  • Chocolate chip cookies. Because they’re freaking delicious.

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  • A village, i.e. “it takes a village.” I live far away from my village—across the ocean, to be exact—and I haven’t found a new one yet. It’s really hard to create a village when you live thousands of miles from your nearest and dearest. I want someone I can call when I’m feeling like shit and need some help collecting the kids from school. Someone who can pop by, play a game with them and let me have a nap. Babysitters are great, but I miss my village. My people. My mom and dad, aunts and uncles, brother and cousins. The people who know you inside and out, backwards and forewords. I miss my best friend bringing me chocolate chip cookies and telling me everything will be okay. Even when it won’t.
  • Chocolate chip cookies. Because you can never have enough.
  • A doctor who can cure me.
  • Except we live in the real world in 2015. So how about a doctor who doesn’t take one look at my file and say, “we’ve got to get you off these drugs”? Assume I’ve tried everything else (I have). The drugs get me through the day without curling into a ball of pain on the bathroom floor (and even with them it sometimes happens). Assume I need them—because I do—and don’t pressure me to get off of them. Because without pain killers, there would be pain. So. Much. Pain. If I could re-wire my brain I would. But I can’t. That’s where you come in, Doc. Help me through this. But don’t assume, like that cranky old pharmacist, that I’m a drug-seeker. Believe me, it’s the last thing I want to be taking. But here we are, Doc. You and me. Let’s figure this out together, with my input and yours, and figure out a plan that’s workable and doesn’t make anything worse.
  • A do-over. Let’s wipe the slate clean, go back in time and take back the one surgery that made this all happen. Let’s borrow Dr. Who’s Tardis. That’s not too much to ask, is it Santa? David Tennant lives round the corner; I bet he has an extra we can borrow.

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  • My final wish is for no one to ever, ever have to deal with chronic illness. It’s a bitch. Someday we’ll get there, with science, with medicine, with miracles, with blood and tears and sweat. With whatever it takes.

But until then, I wish each and every one of you—the cancer patient, the special needs mom, the alcoholic trying desperately to stay sober—the gift of being seen. Seen for what you are, for who you are, and for all of your extraordinary strength. I see you. And I think you are doing a kick-ass job.

This story originally appeared on The Mighty

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Note: if you haven’t read about my medical journey, you might want to catch up here and here first. Pics below are mostly from our recent trip visiting family in Colorado. 

Sitting out on a 95-degree patio with the misters blowing down upon us, dining on tilapia with fig sauce, I was asked, “Are you hopeful?”

I’ve been asked a lot of questions throughout this journey, but this one only twice. The first by my mom; the second by her good friend, my dining companion this particular evening. She and her husband were visiting Scottsdale and I, hopeful gal that I am, was in town visiting the Mayo Clinic in a hail-Mary pass to obtain answers on the ever-present pain in my ear. They offered to take me out to dinner.

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The question takes me aback and it doesn’t, because I’m always hopeful, but at times I lose my bearings and break down in a hospital bathroom somewhere. Who wouldn’t? Unless you’re devoid of emotion the grind of daily pain, and the grind of doctor after doctor telling you they don’t know what’s wrong or how to fix it, wears on you. It’s been wearing on me undeniably.

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But am I hopeful? Yes. I’m the type of person who never gives up. If this doctor doesn’t work I try the next (probably having a breakdown in a bathroom, or a closet, or in the arms of my husband in between). I was hoping the doctors here in Arizona would be the last. But even here–the proverbial Holy Grail of medical care–is stumped.

In between bites of tilapia I explained that yes, I am hopeful, despite each loss and gain along the way (there have been more losses than gains). What I didn’t say was that if I lose hope, I have nothing. I have no choice but to keep hoping, and wishing, and dreaming, and praying to whatever deity I believe in (I’m still deciding), because if I stop, and give up, and surrender to this pain, it will take me under. I have no choice but to keep going, if not only for myself, but for my family.

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So am I still hopeful? Yes and no. I’m hopeful that there will be an answer somehow, someday. I’m no longer hopeful that the answer will come quickly. I’m no longer hopeful that one particular doctor will be the answer. It might need to be a combination of ideas from three, four, five doctors that I pick and choose from like items off a shelf.

Here in the grand old US-of-A I feel that the age-old “pill for every ill” mantra still stands tall. Countless doctors have prescribed me countless medications, some doing more harm than good. I believe in pharmaceuticals and modern medicine and I don’t. We’ve come so far in helping cancer patients, HIV, MS, and many other diseases once thought terminal, by pharmaceuticals and other modern therapies.

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But for someone like me, who doesn’t have one specific illness or a diagnosis, pills aren’t always the answer. I can control some of my symptoms with them, but they often provide some awful side effects that make them unworthy of ingesting. For some people hope can come in the form of a pill, or radiation, or chemotherapy. But not for me. I often wish it were the case. Take one three times a day and you’ll be cured. How easy would that be?

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Am I hopeful? Some days yes, some days no, and somewhere I’m in between. But what I have learned is that this journey isn’t up to the doctors anymore. It’s up to me. What’s most unfortunate in American medicine is that you have to be your own advocate. You have to fight for what you need. You have to ask the right questions. Doctors won’t communicate with each other–you have to communicate for them with documentation. And if you aren’t being listened to, you have to be a pain in the ass. Call and visit and book appointments until someone does listen, or have someone with great hutzpah do this for you. Bring a friend or a relative to your appointments and give them your list of questions, too. That way if you break down, or lose your train of thought, or aren’t being listened to, they can jump in for you.

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Years ago (though it seems painfully like yesterday) after my mom underwent her first surgery for stage 4 uteran cancer, I slept by her bed for a week in the hospital, leaving only during the day to shower and change clothes at my college apartment. The nurses would tell me I didn’t have to stay, and my family would tell me we could split the night shift, but I wouldn’t budge. It was a silent agreement between she and I: I won’t leave you, and you won’t die on me.

The other reason? If she needed something in the middle of the night and pressed the call button, the nurses took five, ten, sometimes fifteen or twenty minutes to come. So I would hop out of bed and go harass them to come attend to her. If you can’t be your own advocate, you have to have someone else be.

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My Mom, right, and Charlie the sad cowgirl, left.

My mother is a true survivor, physically and mentally. She beat the son of a bitch called cancer and has been free and clear for several years. She never lost hope, even if she faltered here and there; it was always lingering in her body, fighting off the disease along with her. I try to be like her, even though I’m not staring something as daunting as death in the face. How do you not lose hope when the situation looks grim? All I need to do is go ask my mom. She and my dad have been my greatest advocates since the day I was born.

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I ran across this Post Secret today, a site I read religiously every Sunday morning. It reminded me not only to count my blessings—I have so very many, including two healthy, happy children, a husband who provides me emotional support, a shoulder to cry on, and (among many other wonderful things) great health insurance through his job. What do I (though I wouldn’t call us wealthy) have to worry about? In the grand scheme of things, very little.

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I worry about getting better so my kids have the mommy they deserve. I worry that my husband will forever have to prop me up when I fall down. I worry that there will be no cure—that I will go through life being forever allergic to noise. I worry that I will lose hope.

But am I hopeful today? Right now? Yes. Ask me again tomorrow.

xo

Jenny