Going Wireless

The trial period with my spinal stimulator ended yesterday.  Layers upon layers of bandages and tape were removed, stitches were snipped, bruises were revealed, and wires were extracted. 

Yes, I'm VERY sore as a result – thank you for asking.

It had to be a relatively short trial because of the high risk of infection when wires are hanging out of a person's body.  Although the implant is not a magic bullet, the positives of the unit definitely outweigh the negatives.  I will be moving forward towards receiving a permanent implant.

I was informed, upfront, the implant would not be a cure-all, but I was disappointed anyway to realize I still had some pain even with the electrodes working.  I did, however, find I was taking way FEWER pain meds and sleeping much better at night.  Dr. Painless explained to me the implant is just one weapon in the arsenal against severe chronic pain.  

Neurostimulation won't increase the function of my arm.  It won't make me completely pain free … it's just a tool, but it's my best hope for a more normal life.  During the trial period I had days when I saw a big improvement and other days when it didn't seem to help as much – probably because I also had some surgical pain in the mix.  Apparently, that is a normal experience and my trial came out with a positive result.

I have to heal for two to three weeks from last week's surgery before they can proceed with the second surgery for the permanent implant.  Receiving a permanent stimulator (giggle- yes, I AM a 12 year old boy!) is a much bigger deal than what I just went through.

I'm dreading the whole ordeal.  

I'm also choosing to block the impending surgery and two month recovery out of my mind until I absolutely have to face it head on.

By the way, during the next surgery I will be getting 24 electrodes put into my arm and shoulder.  

TWENTY FOUR!

My favorite number!

How ironic is that?

Not fifteen, not twenty five or thirty – but TWENTY FOUR.

And no, I had nothing to do with the decision to implant 24 electrodes into my body.  That decision was made by my doctor.

Although it may not seem to be the case, I've always had trouble writing about The Accident and The Recovery.  I don't want to bore you for one thing.  Also, it never endsthere is no ending to the story.  I didn't know that would be the case a year or two ago, but I've (sort of) accepted the reality of it now.

And yet, I do write about the accident and its horrible aftermath, even when it makes me feel uneasy.

For those of you who merely think I like to ramble on and on about it, I'd like to explain why I continue to write about this topic.

Sure, it's therapeutic for me to vent, but mainly …

It's because of The Letters.

I get emails every single week.

Every.Single.Week.

The emails come from people all over the world.  People with disabilities.  People with chronic pain.  People who have suffered so much more than I ever have, and some people who feel embarrassed because they HAVEN'T suffered as much as I have.  Some people suffer from depression or mental illness, some people have physical disabilities, some people are dying from terrible, merciless, diseases ….

They write to me and they share their stories with me.  

Every single letter touches me deeply.

I feel those letters.  I do.  

I'm not an expert in chronic pain.

I'm not an expert in being disabled or coping with a disability.

I do, however, know what it feels like to be isolated by a situation you don't have control over.  I've learned to empathize in an entirely different way now.  

I also know what it means to struggle, to fight, to give up, and to try again.

And again … and again.

The people who write to me?

They understand IT too.

They reach out to me, because they know I understand IT.

I hear, time and time again, about how my writing, the mere act of writing publicly, has helped other people in some small way. 

And so …

I continue to write about whatever I'm going through.

To those of you who think, "Oh God, here she goes again," I apologize.

This blog is a mix of many things.  It's me.  It's Orange County.  It's humor.  It's travel.  It's photography.  It's sadness.  It's laughter.  It's my battles and triumphs.  And yes, it's also pain and the ongoing struggle to overcome obstacles.  

It's me.

I'm not everybody's cup of tea – I realize that.  

And now I've explained why this part of my life is one of the topics I continue to write about.  

It's because of The Letters.

The Accident and The Recovery are not my whole life, and they aren't my whole blog.   

To those of you who write and tell me, "If you'd stop thinking about it and just move on with your life, you'd get better," I say –

I hope you, or someone you love, never walks in my shoes.

It's not an easy path to walk.

I'm not everybody's cup of tea …

But – I'm genuine.

Twenty Four At Heart is me.

© Twenty Four At Heart

16 Responses to “Going Wireless”

  1. Lynda M O

    I love you and what you have done for us chronic pain patients. For those who don’t like you, there are lots of other blogs out there begging to be read. Stay with it, Suz, you’re a rare and, as you pointed out, genuine.

  2. Michelle

    I’m glad that there has been an upside to the trial and pray that when the 24 electrodes go in, you will have an even better result (and why wouldn’t you, it’s your number!).
    Also, writing about the accident and recovery is important. It’s a part of who you are, and as you said, it helps others. So, you go girl, and keep writing your story.

  3. unmitigated me (m.a.w.)

    “If you’d stop thinking about it and just move on with your life, you’d get better…”
    Oh, holy shit. NO. It doesn’t improve when you try to ignore it. It gets WORSE because you aren’t maintaining it! The maintenance becomes a lifetime task. Yet, we go on, because there is life to be lived and photos to be taken.
    At my old job, I felt as thought I had disappeared, and all that remained was my back. People had stopped asking, “How are you?” and replaced it with a grimace and “How is your back?”
    More often than not, though you appreciate everyone’s concern, you just want to lie and say, “Fine. It’s fine.”
    How’s that for a contradiction? I felt like I needed a shirt that would flash the pain level and mood for the day. Let’s invent that, 24, and we’ll be rich. Then, even though we have pain, we can hire cabana boys to distract us.
    I think we need a badge…for the Chronic Pain Network…so people will recognize kindred spirits…people who get it.

  4. A Mom on Spin

    I guess there will be no “end” of it all for you. But perhaps this next step will help to make it more bearable.
    I have never suffered the type of pain you experience, but I applaud you for your work in helping others know they’re not alone.

  5. Joanne

    the people that are “bored” hearing you in pain, are just to selfish to even feel thankful for the blessings they have, and probably dont like it when they are made to realize that

  6. Jan

    You’re my cup of tea. I like to add a little sweetener (Stevia these days) and stir you up. 😛

  7. di

    It’s amazing that technology has come this far for people who suffer with pain. Who knows what’s around the corner as far as inventions to control pain. It could happen tomorrow and that’s a great thing to think about.
    I hope these 24 electrodes will help you immensely and that there’s something even better just beyond the horizon that will take all of your pain away.
    Hugs.
    Di

  8. Tami

    You ARE genuine and thats what brings me back here everyday. You make me laugh, cry, THINK, and have compassion. I so love your pictures too. Keep doing exactly what your doing its why we love you!

  9. missy

    It’s called LIFE people. I love that you write about it all. Your readers cheer every time you make a bit of progress and we feel badly with every set back. You are so courageous. Thanks for sharing your life with all of us.

  10. Kelly

    I’m glad the test came out positive. It may not make it a perfect world but its all about making gains. I’m very curious about this whole process and look forward to seeing photos and learning more as you move forward.

  11. Jenn in Tenn

    SOOO glad there is a light on your horizon. Nothing is ever a cure all, but happy to hear life is definitely becoming more bearable! As for the haters, let them hate..and go on with their miserable selves. I for one, love every facet of your writing, and I will stick around for more!! p.s. there’s gotta be a sign in the fact that there’s 24 electrodes…dontcha think? 😉

  12. Marissa

    Keep on keepin’ on S. You’re doing a great job, even on the days you don’t feel like you are.

  13. Siren

    Sometimes I hesitate to write about stuff because I feel like I’m just rehashing the same crap over and over. And then when I do write about it — AGAIN — those are the days people comment saying how glad they are that I’m writing.
    I think revisiting the same stuff is just what humans do. We make sense of things by thinking them through in different ways. There’s no shame in it. And with a subject like chronic pain, which is something most people aren’t personally familiar with, for you to talk about it again and again is good.
    I mean, I like the other stuff, and I totally relate to what you mean when you say the struggle isn’t the only thing that defines you. But speaking as one of your readers — that struggle is what caught me. That’s why I come back. There’s something profound in it, and when you write about it I feel a sense of having been allowed a special glimpse into something most people keep quiet and private.
    I can understand not wanting to write about it all the time because you need to keep a sense of balance in your own life. I can’t write about my stuff constantly either. But I hope you won’t ever not write because you think you shouldn’t, because you’ve worn out the subject, because you think your readers are tired of it. We’re not. I’m not. Every nuance of it matters, and I for one will keep reading and keep feeling honored and awed that you’re willing to share.
    Sorry to write an endless comment here and to get all mushy about it but there you have it.

  14. Linda M

    I am lucky enough to NOT have anyone close to me dealing with chronic pain or other disabilities, knock on wood! I read your blog because I love your honesty, your willingness to share your journey. I see your blog as a way of reflecting upon yourself and figuring out what you want to “work on” in your life. I only wish I could turn that same lens upon myself. Personally I think this is hard to do for me, and other people too, because it’s uncomfortable. You are dealing with something that is uncomfortable (and more!) all the time, so perhaps that helps you be more honest with yourself in other areas.
    Plus, you are just dang funny! When I need a lift, I go back & reread one of your blogs. (The waxing episodes….oh my!) I also appreciate your photographs–a taste of Southern California through your photos helps me feel connected to my sister in San Diego. I love the other ones you’ve shared, too.
    Thank you for sharing yourself and your incredible photography!

  15. Linda M

    I am lucky enough to NOT have anyone close to me dealing with chronic pain or other disabilities, knock on wood! I read your blog because I love your honesty, your willingness to share your journey. I see your blog as a way of reflecting upon yourself and figuring out what you want to “work on” in your life. I only wish I could turn that same lens upon myself. Personally I think this is hard to do for me, and other people too, because it’s uncomfortable. You are dealing with something that is uncomfortable (and more!) all the time, so perhaps that helps you be more honest with yourself in other areas.
    Plus, you are just dang funny! When I need a lift, I go back & reread one of your blogs. (The waxing episodes….oh my!) I also appreciate your photographs–a taste of Southern California through your photos helps me feel connected to my sister in San Diego. I love the other ones you’ve shared, too.
    Thank you for sharing yourself and your incredible photography!

  16. Air Jordan 7

    If you attend a church meeting without fear of harassment, arrest, torture, or death, you are more blessed than almost three billion people in the world.

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