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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

Comments

  1. Oh Jenny, how awful for you! No, you’re not a “pathetic whiner”….as the Dr said, you shouldn’t still be in pain so long after your surgery!

    I hope you get some answers soon that will fix it for you.

    *hugs*
    Mel.

    • rainyd01 says:

      Thank you Mel! You’re the best. I hope I get answers soon, too. Big visit at the university tomorrow…fingers crossed. xoxo

  2. Oh no, feel better soon! Your kids are gorgeous, as always :)

  3. Such a good reminder to appreciate feeling fine – thank you for that. I am so sorry you are dealing with this and were treated so dismissively by your surgeon (what the hell?) So glad you’re visiting some more docs. Someone will take an interest and really help you get to the bottom of this – they have to. Wishing you the best.

    • rainyd01 says:

      Thanks, Kare. I hope so! Yeah, I don’t know what’s up with the surgeon. I’m hoping it wasn’t something fishy but we’ll see :(

  4. Hi Jenny I am sorry to hear about your pains. I believe you without question or doubt. Now sadly I don’t have the magic bullet that I and the rest of the pain sufferers all share. All I can say is that pain is the most underrated illness that effects most people over the course of their life but most are lucky that it only comes at the end. I am like you still under 40(just) and have had 5 years of chronic pain. I am resolved to the point of knowing that current medical treatments are probably not going to hack it. So I try and get up every day and keep a smile on my face. The face that most people see in public is not the one I see in the mirror as I try to plan each day so that I sleep eat and medicate according to the day. It’s not perfect but don’t let it get you. Protect your relationship as I can assure you it’s harder on your own. Families also feel the pain and keep asking how are you feeling today? How’s your pain? When will you take your next tablet? Is that tablet working yet? Oh yeah of course I wish it was so easy but it’s not and it’s only cause your family want you to be better hence they keep asking. Family needs more support as its not just the paitent who needs support. Don’t forget the family, protect what you have and remeber to stay realistic while being positive. Not easy know but as you already know its a fine line between the pain threshold that you can cope with and the opioid levels you are still you with. Only you know where that line falls. I respectfully suggest that going to so many surgeons can be countr productive and I have in the past had second and third opinions but I read a book where the author who has chronic pain visits 90+ doctors. I ink the stress around just the visits themselves is enought to give anyone chronic pain. Where pain is new or undiscovered that means there are no standard protocols so find the one you feel you trust, ensure they are willing to agree a treatment plan but you should never leave without the appropriate pain control. Being denied pain relief is a human right issue and should never be denied. Keep a pain diary, ask your family to keep a pain diary as when you feel your pain you will score lower however the people close to you will know better than you will, therefore use their data to plot your patterns, avoid things that make it worse and what makes it better. Start drawing, painting singing dancing anything t

    • rainyd01 says:

      Scott,

      You have no idea how much your comment meant to me. To know that a perfect stranger halfway across the world knows I’m not crazy, and there are doctors right in front of me who think I am, is comforting. I keep going back to doctors in the hopes that there is a cure. Maybe there will be, maybe there won’t–but I don’t think I can give up hope yet.

      I’m so sorry that you’re living with pain as well, and five years to boot. Thank you for your kind advice–it means more to me than you’ll ever know. I’ll be rooting for you.

      Jenny

  5. Hi Jenny indeed it’s a long match so stay in the game, be strong and honest to yourself. If I can help at anytime drop me a mail. (I guess you can see my email address). Take care and I hope that you find a better place as soon as possible. Scott :-)

  6. Emily N says:

    Oh, Jenny! My heart goes out to you. I hope you get some answers and relief soon. Hopefully the Mayo Clinic will be able to get to the bottom of this. I’m sorry that you are in so much pain!

  7. Melissa R says:

    Jenny,

    I will be praying for you, that you can find a doctor or someone to take your pain away.

    Pax et bonum

  8. Dear Jenny,

    My husband and I love your corn chowder, and today when I visited your blog to find a seafood chowder recipe, I also read your May 29 post, which reminded me of an article I read just a week ago in the Washington Post. It chronicles the difficulties Jan Harrod experienced after what her doctors insisted was a successful shoulder surgery.

    I realize I’m commenting two months after you posted this update, and I hope that you have found relief from your pain and sound intolerance. If that has not happened, perhaps information in the WP article will be helpful.

    With very best wishes,

    Jan

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