hope

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

 

the pain diary (ear saga part deux)

It’s been too long since I’ve given you a medical update here on the blog. If you’re my personal friend or Facebook friend, you probably know what’s been going on. But if not, I feel like I should let you in on something…something quite crappy going on in my life.

Remember that surgery I had? The one to fix my hearing?

I thought it would be a life saver. And maybe, eventually, it will be. But right now, I wish I had never done it. Because now, you see, I’m worse off than I was before. Before I was going deaf and now I not only need to wear an earplug 24/7, but I also have mind-numbing pain. All. The. Time.

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Let’s take a step back. The surgery was to repair my going-deaf ear by replacing one of the tiny ear bones with a tiny titanium prosthetic. The surgeon said it went fine and that I was recovering well. But I insisted I wasn’t “recovering well”, because I was still having pain.

“I’ve never heard of this,” he said. The words still echo through my mind nine months later. “You should not be having pain this long after surgery.” After a few post-op visits, and hearing tests that proved I was, in fact, gaining my hearing back, he dismissed me with those final words. He wouldn’t prescribe me any more painkillers and insisted on a regimen of Aleve.

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I wept my way to the parking lot in a blur of tears. He didn’t understand; couldn’t understand. Aleve? Aleve wouldn’t cut it. I was not, and am not, addicted to painkillers, for Christ sakes. This was–is–real pain, cutting through my ear and reaching up behind my eye, yanking down my neck like some devil’s hand. It never goes away. Morning, noon, night–pain.

I have a life to lead. A life that was going along swimmingly until I lost my hearing; a life that was going along great until the operation. My two tiny girls have a mommy who is cranky, deaf and frustrated.

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It sounds like I’m blaming the surgeon. Maybe I should be, and maybe I shouldn’t be. I have no diagnosis to go on. I’m just so fed up, living with day-to-day pain. I’ve been to four other doctors—three more on the docket in the coming weeks, including the Mayo Clinic in Phoenix—and no one can give me an answer as to why this pain is occurring. I’ve had MRIs, CTs, massage, cranio-sacral therapy. I manage on a regimen of painkillers that I loathe— they make my mind foggy and sleepy. I don’t want to live on pharmaceuticals, but right now they’re the only things I’ve found that makes the pain manageable. They don’t even fully take it away, just numb it a bit.

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The worst part? Sound makes the pain worse. The simple banter of my daughter requesting eggs for breakfast is murder; if I must attend a loud event I’m screwed for days. I’ve become a recluse, mostly avoiding social situations when I can. The world is loud, and it won’t stop being loud. I don’t blame it. I want the world to be loud–I just want to be a part of it. I want to hear it.

I wear an earplug at all hours of the day. It irritates my ear even further and everyone stares at me curiously. I don’t listen to music. I don’t watch TV. I don’t go to movies. I used to enjoy these things—they used to make me happy, make me relax, and now I can’t.

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I’m back to where I was—deaf—but worse than deaf. My other ear, the one without the earplug, is deafer than it was before we discovered the disease (otosclerosis), and it’s degenerative. My poor children and husband have to repeat themselves endlessly to speak to me. We should just get pads and pens to communicate. The only thing that keeps me sane right now is this—writing—but on the painkillers my brain gets foggy and word recall is sometimes difficult. I think I’ll lose my mind soon.

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My dear Lucy with a paper necklace she made for me. Notice the oh-so-fashionable purple earplug.

I worship those of you who have been living with chronic pain for longer than I have. I don’t know how you do it (how do you do it?). There are so many people worse off than me—I’m just being a pathetic whiner.

But I do feel as though I have to tell my story in case there is someone out there reading who is experiencing the same thing. If that’s you—if you have otosclerosis (conductive hearing loss)—thoughtfully consider your options. It’s such a delicate area to operate on.

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Stay well. Hug your kids. Call a friend. Blast your music. Go to movies. RSVP YES! to that party. Listen to the traffic and the birds and the lawnmowers. I hope that I will be able to again, someday soon.

Xo

Jenny