Admitting I’m Scared

When I first began writing Twenty Four At Heart post-car accident, I was in a very bad shape, both physically and emotionally.  (Much worse than I ever wrote about.)  I try not to think about that time period because it was a really, really, horrible time in my life.

People ask me for updates on my status often.  I write about my progress, but I worry I'm boring you when I give updates.  Lately, things have been changing at a rapid pace and, at times, it makes my head spin trying to keep up with it all.  

As an aside:  I wish I'd started in with a pain management doc years ago.  If you ever find yourself dealing with a lot of pain for ANY reason, please realize what I did not – there's help out there.  My doctors (well, some of them) were excellent at what they did, but pain management was not their expertise.  I went through a lot more pain than I needed to go through.

Also, I have to say I cringe when people write and tell me I'm inspiring.

I'm not inspiring.  I wish I could say I was, but I'm not.

I've cried, gotten angry, sworn at the world, indulged in pity parties, felt depressed, and asked "why me?" more than my fair share number of times.  Folks, there's nothing inspiring about me.  Nothing.

And now … now, I'm scared.

Logically, I know I shouldn't be.

And yet, ugh!

I met with my pain management doctor, Dr. Painless, again this last week.  It looks like I will be moving forward on the path towards having electrodes implanted in my body to help manage my pain.  Doing so involves two minor procedures/surgeries, and yet – my heart freezes at the thought.

I've had SIX surgeries already and all of them were a BIG.DEAL compared to what lies ahead.  Implanting electrodes under the skin is minor stuff.  Emotionally, however, there's something inside me that runs cold at the thought of walking into yet another surgery center.

I'm the one in control of this situation.  Implanting electrodes in my body is not something I HAVE to do.  It's something I'm choosing to pursue because I've lived with high levels of pain for over four years.  Electrodes won't make my arm or shoulder work again, but they *might* make my pain decrease substantially.

There's also the possibility less pain will result, long term, in more function.  It may not, but …?

I've had electrical stimulation at physical therapy.  For a long time I even had a portable electrical stim unit strapped to my body and I walked around all day with it.  (Of course, I made lots of jokes about my personal stimulator!)  Electrical stimulation did help with my pain although it didn't completely eliminate it – and when the stim stopped, the pain came right back.

Boring 3 sentence explanation:  Electrical stimulation works by interfering with the pain signal sent from the nerves to the brain.  It kind of "scrambles the signal" by blocking the transmission of pain messages to your brain.  Instead of pain, you feel a mild tingling sensation which TRUST ME is much easier to live with than pain.

These are the steps I will be moving through over the next several weeks once I return from my trip back east:

1.  Consulting with a pain psychologist.  He has to approve me as a good candidate before anything can move forward.  (Meaning, he needs to believe I won't freak out at the idea of having something implanted in my body and start screaming Alien!  Alien!.)

2.  Meeting with Dr. Painless to discuss details.

3.  Procedure #1 at the surgery center to put in temporary electrodes with an external charger.  This is done to see whether the electrodes help my pain levels, are in the correct location, blah, blah, blah.

4.  Removal of temporary electrodes about a week later.  This isn't *supposed to be* a big deal.  (but ouch?)

5.  Another meeting with Dr. Painless to discuss results.

**  If the electrodes don't help, or don't help very much, everything stops here.  If they do help, I proceed to step #6.  **

6.  Procedure #2 at the surgery center to put permanent electrodes into my body along with a pacemaker-type device which acts as a battery/charger.  This is a bigger procedure than putting in the temporary electrodes, but still not a major deal.  I don't think.  And yes, the device will be visible as a bump/bulge under my skin because there's not much fat to hide it under on my arm or shoulder.  The electrodes/charging unit last about ten years before needing to be replaced/removed.

7.  Follow-up visits with Dr. Painless.

At my visit with Dr. Painless this week there was a patient at his office saying good-bye to him.  She had one of these devices implanted and it has helped so much she no longer needs to see Dr. Painless.

Can you imagine?  Being pain free after years of being miserable?  I try, but I can't even imagine ….

Electrodes don't work for everyone or for every type of pain.  There's no way, at this point, to know if they'll work for me.

In the meantime, Dr. Painless is helping me in other ways.  He's given me lidocaine patches which act like giant numbing band-aids I can wear on my arm and shoulder for 12 hours each day.  They help a lot.  How I wish I had been given the patches earlier for my worst days at physical therapy!  It would have made such a difference.  

He's also given me prescription anti-inflammatories, narcotic pain meds (which I've had ever since the accident, but hate taking), sleeping pills for the nights when the pain flares to brutal levels, topical medications to help with pain, etc., etc.  He's got a giant bag of tricks.

I'm still in pain. 

In fact, as I write this I'm in a lot of pain.  (It is, I know, time for the pain meds I try so hard NOT to take.  I suppose it's my own fault for being so stubborn?)  The high pain level as I write this is, in large part, due to my daily swimming and the brace I'm now wearing several hours each day.  And yet, both are important – vital really, so my arm and shoulder don't atrophy away to nothing and become even more painful.

So why do I have this gnawing fear of moving forward?

I know it's not logical.  I don't HAVE to have the electrodes implanted.  If the temporary electrodes don't work, the permanent ones won't be implanted.  In fact, if I'm honest the electrodes having nothing to do with my fear.  I know they have a good chance of helping me.

I want to be pain-free, or as close to it as I can get.  I dream of holding a camera without gasping in pain.  My arm may never function normally, but less pain could be life changing.

My fear stems from the thought of walking back into a surgery center.  There are so many horrible memories which come rushing back at the very thought of it..  Overwhelming, pain-filled, memories of surgery, after surgery, after surgery ….

Logical or not, I'm scared.

© Twenty Four At Heart

26 Responses to “Admitting I’m Scared”

  1. Lynda M Otvos

    Know that i am here sending you as much energy as the Bay Area can spare, Twenty-Four.

  2. Michelle

    I was wondering how your brace was going.
    I don’t blame you for being scared. There is a lot of history with surgery. And fear is irrational. We can ‘know’ that something is mostly harmless (think a dog), but fear just throws what our head knows out the window and our heart freaks out. (Make sense? I hope so.) Praying that what you ‘know’ over-rules the fear.

  3. Freda

    I’m a new reader and will certainly be thinking of you as you go forward to another stage. Thank you for sharing everything so honestly – it’s refreshing and humbling, (good for the soul is what I really mean.) Every Blessing

  4. Joanne

    Sweet cheeks, we dont love you because you are logical! We love you because you are 100% fallibly HUMAN , and willing to take on your fears even if you are shaking in your flip-flops!

  5. Karen

    Do you think inspiration comes only from people who live perfect lives and make perfect decisions and cure world woes? No, for me inspiration comes from people who overcome life’s obstacles, tackle them head-on despite the fear (which can be crippling in and of itself)..and maintain humor through-out it all. You do these things, with an honesty and a willingness to share your journey. That, my dear, is inspiring.
    Thinking of you as you take the next step.

  6. di

    Devices similar to what you will be using are also used for managing the signal that goes to the brain to prevent shaking in Parkinson’s Disease which Medtronic is developing or may have already since Hubby left their employment. Also there is a company in Texas that is working with a pain management device for controlling cancer pain.
    Not to brag, but this is what my darling Hubby does as an electrical engineer. He writes the tests for the parts that go into these devices for failure, or I should say, ‘he did’. He says it’s a rather simple procedure to have these devices placed into the body….. easy for him to say!
    Wishing you luck and most of all success with this, Suzanne.

  7. WebSavvyMom

    –>If there is some short term pain with the surgery for the long rewards of being mostly pain free it sounds like something you should pursue. However, it’s Your body and Your decision.

  8. Jan

    My nephew goes into surgery for this very thing tomorrow – I’ll let you know how it goes; I’m not sure the poor kid will make it, mentally, if it doesn’t work.
    As for being inspiring, read what Karen wrote. Then read it again, and again if you have to. Because every word of it is true.

  9. Pam

    I’m thinking of you and hope that the electrodes work so you can do what you want without pain! Good luck!

  10. Kelly

    Of course you’re scared. Any type of surgery, even minor, is nerve racking. Very normal! You’ve gone thru a lot. I think something would be very wrong if you didn’t have concern over this. I pray it helps you and you go on to share more and more of your amazing photos with us! big hugs!!

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

    I took me a few months to remember how to function without pain. When you’ve lived with it for a long time, it becomes part of you…a horrible little companion that you can’t live without.

  12. Tami

    Sweety, you ARE inspiring – very. Karen is right, you don’t have to face every day with an eager grin to be inspiring. You’ve handled hell as gracefully as possible. You’ve struggled, fought, and overcome on a daily basis. You’ve kept an amazing sense of humor, entertained thousands of us with your witty, wonderful, writing. Not to mention your photos! The fact it hurts you to take them, but then you share these glimpses of beauty with us thru them. You ARE inspiring. And AMAZING. And BEAUTIFUL inside and out. Don’t ever doubt it for even a moment.

  13. missy

    I couldn’t have said it better that all the readers who have already commented. Your inspire us and we support you.

  14. Sugar Jones

    Oh honey… I don’t know your level of pain, but I do know what it’s like to be in constant pain over a long period of time. I can only imagine what you’ve been through all this time. It’s rather hard to believe when I picture your sunny face in a beautiful hat at the races in Del Mar. I’m sorry, but have to say, your positive attitude and courage are inspiring.

  15. Alexis

    Well….first of all…it’s very possible to have “gotten angry, sworn at the world, indulged in pity parties, felt depressed, and asked “why me?” more than my fair share number of times.” be “scared” and STILL be inspiring. For the record, some of the most inspiring people I know have been all of those things at one time or another. I think what makes it inspiring is that most of us can’t imagine going through what you’ve gone through and still going about our lives….you’re living what we’re afraid we couldn’t. And, you’re doing it well and keeping a sense of humor.
    When people have some unasked for trauma in their lives and they continue to get up in the morning, breathe and put one foot in front of the other I’m impressed. When they do that and still find a way to enjoy life and put a smile on the face of others in the midst of their own shit….that’s inspiring.
    As far as the whole implant thing goes – you’ll know if and when it’s all right for you. Stay centered and focused on what YOUR goal for the procedure is and you’ll be fine. It’ll be hard but you’ve done hard before. You’ll be fine. {{gentle hugs}}

  16. Jack

    I’d be more concerned if you weren’t scared. Fear can be a very healthy reaction. It is a question of how you deal with the fear. I hope that it works for you and that the electrodes make it all much more manageable.

  17. Chantel

    It’s totally normally to be scared. I would be worried if you weren’t. The amount of grace, humor and positive outlook you portray is what makes you inspiring! A lot of go through a lot less in life and can barely lift our heads up. *raising my hand*
    My best friend recently had the same surgery. She had a spine stimulator implanted after the weeklong trial proved beneficial. In fact she is two weeks post surgery. Let me know if you have any questions.
    When I first found your blog, I immediately forwarded it to her. You both have alot in common with a car accident injury, numerous surgeries etc… She wrote you a LONG email and then it was accidentally deleted. Now might be a great time to put you two in touch with each other.

  18. ocshannon714

    Thinking good thoughts for you. It sounds like your in great hands with Dr. Painless. I cannot fathom being in pain ALL OF THE TIME!! I think it is amazing that you are working so hard (brace, therapy, dr. painless, etc…)to be in ‘less’ pain, or to improve your situation to the best of your ability. So many people give up, and don’t see anyone for help (my mom to be specific). Life is too short to not fully enjoy it! Good luck to you!!!

  19. Overflowing Brain

    As usual, I understand exactly what your saying. I’m getting ready to see a new neurologist (my stint in pain management was not nearly as successful as yours) and am potentially facing another brain surgery- one I REALLY don’t want. But it stands a chance at helping my pain, if it hasn’t already become permanent, and so I really can’t say no.
    It’s terrifying. But it’s hope and a chance for change. Xoxo

  20. Jane

    Having yet another surgery is really frightening, even though you know it might help a lot. It’s a lot to take on psychologically. I wish you the very best outcome and hope that your pain will be mostly gone.
    P.S. Don’t tell the psychologist about those tinfoil hats.

  21. Cathy B

    That is one of the definitions of courage – to do something even though you’re scared.
    And for what it’s worth, you’ll have lots of positive energy from your readers backing you up.

  22. Jill

    Ugh … I can’t imagine the type of pain you’re in. Here’s hoping that all goes well with your future procedures!! You totally deserve it.

  23. vodkamom

    Wow. We all have our little suitcases filled with our stories that we carry around with us. I am so sad that yours contains pain- and fear. However, I know what a strong woman you are- and I hope you know that so many of us love you. We send you strength, and we will walk right here beside you every step of the way.
    ONe day at a time. right? One damn day at a time.

  24. Michelle Pixie

    First, I want you to know for me you are inspiring! And all the things you think that don’t make you inspiring are exactly why I think you and because you still keep going…INSPIRING!
    Second, I am sorry to hear you hadn’t gotten the benefit of lidocaine patches sooner. My girl has been on them for a few months now and have made a world of difference for her.
    I look forward to the near future when you are pain free!


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