Four Months Later

Today is the four month anniversary of my eighth arm/shoulder surgery.

An unexpected car accident, four and a half years, eight resulting surgeries – and now four months of recovery.

Life?

Well, life is oftentimes a very different experience than you expect it to be.

I don't write as much about my non-functioning arm as I did previously.  I try not to whine too much when I have a bad pain day, or experience a flare-up that lasts for days on end. 

For one thing, I read a few blogs written by chronic pain patients.  As much as I understand every single word the authors write (and oh, do I!) … even I get tired of hearing nothing but negativity and – yes, whining.

Don't get me wrong, I do my fair share of griping, complaining and whining too …

I just work very hard to keep it to a minimum.

I really believe, when you find yourself in a situation like mine, you have to force yourself to concentrate on whatever positives you can find.  I realize that isn't going to happen every moment, or even every day.  Let's be honest, there are many days when it's really a struggle to just breathe when you live with intense pain.

Pain is so overwhelming.  

So defeating.

Sometimes, it really is therapeutic to write about it and/or just vent.

There's also an abundance of negative people who are perfectly healthy.  Finding positives in life can, at times, be difficult for all of us.  It's so much more difficult when you have to live with ongoing pain.

But still ….

I think there's a lot to be gained by turning my personal focus outward as much as I can, vs. dwelling on "my situation."

Maybe that's why photography resonates with me so much.  With a camera to my eye I become focused on finding the positives surrounding me.  I find myself searching for beauty, and discovering it in even the smallest of things.  It's better to stay distracted from what my own body is doing and saying.

I also know you, my readers, jumped through hoops to help me get my bionic arm.  The outpouring of support and love you gave me was amazing.  If I write a post saying how much pain I'm in, I feel I'll just come off as ungrateful for all you've done for me.

And I'm not ungrateful.

Not at all.

In fact, I feel forever indebted to everyone who made an effort on my behalf.

At the same time, I feel like you deserve to know my progress because so many of you have been involved in my story.

So, here I am … four months post-surgery.

I have twenty four electrodes in my arm and shoulder.  Wires inside my body run down my spine and a mini-computer in my abdomen operates the whole contraption.

Is it helping?

Yes.

And no.

The neurostimulator (because that's what my bionic device is called) doesn't improve the function of my arm.  I knew that would be the case before the surgery was ever performed.  The whole purpose of the neurostimulator is to decrease pain, not magically make my damaged arm work again.

Since my physical therapy was discontinued, I've actually lost some of the function in my arm.  It scares me.  I know I should be in ongoing physical therapy, at least a few times each month.  At the same time, I doubt if that's going to ever happen.  

I do what I can on my own.  

I worry a lot about losing more function.

A lot.

It weighs heavily on my mind, all the time.

So what about the pain?

I always have pain.  Every single moment of every single day, I'm in pain.

The difference, with the neurostimulator, is that a good deal of the time I can now "manage" my pain level.  

Not always, mind you – there are many days/times/moments when I don't feel like I'm managing it at all.  (Like this week, as a matter of fact.)

But overall, the neurostimulator has brought down the intensity of my pain a very important notch or two.  What that means is, I can deal with my life a little bit better.  When I take pain medication, the medication is now more effective because my pain level isn't to the point where nothing can touch it.

I still need pain meds.  I most likely always will.  I had hoped I wouldn't, but I do.

Towards the end of each day, by around 3:00 or so, my arm has had enough and begins protesting louder and louder.  The pain escalates in direct proportion to how much I've attempted to use my arm during the day. 

If I make it to 4 or 5:00 without any type of pain medication, it's a good day.  It also means I probably had a day of doing next to nothing.  Using my arm, or attempting to use it, aggravates the damaged nerves.

For most of the last several years, I would try to "tough it out" through as much pain as I could.  I was afraid of becoming addicted to pain meds.  I felt like I "should" be able to handle life without them.

What I've learned from my pain specialist, is that it's a lot more effective to nip pain in the bud before it spirals out of control.  (It has something to do with rapidly firing nerves and blah, blah, blah.)  That means I use pain meds more frequently now, but overall I'm consuming less of them.  Instead of waiting until I'm in such bad shape I need ten pain pills a day, for multiple days – I now take a much smaller amount, but on a regular basis. 

He has taught me many other ways to "manage" my pain too, so I can live a better quality of life.  

My life isn't remotely close to being a pain-free life, but it's a better life than I had a year ago.

If I use my arm a lot (or try to) my pain level will increase rapidly.  I still have pain flare-ups which are intense and can last for days.  However, they're often less intense now that I have the neurostimulator.  A pain flare-up that might have lasted two weeks before, will now last a week.

Basically, everything is the same, except now – it's a little LESS SO.

Frequently, the sensation the neurostimulator makes irritates my arm.  I rotate having it on, and off.  I change it's frequency and intensity sometimes several times in a day.  It's not perfect and it's not the end-all solution to pain.  As my doctor has said to me repeatedly, "It's just one tool in the arsenal we need to fight this with." 

Still … there was a time when I was popping ten pain pills a day, curled up in a ball whimpering, and hoping someone would please put me out of my misery.

Things are better.

Things aren't perfect.

Things won't ever be "perfect."

Things are, however, better.

© Twenty Four At Heart

17 Responses to “Four Months Later”

  1. karen

    It sounds to me as though you have done an excellent job of finding a way to manage your pain by monitoring your use and pain pill consumption. That you have been able to decrease the amount of meds is terrific.. I hope you find steady improvement as times goes on and the device becomes more effective as your body gets used to it.
    I’m just curious and it’s none of my business, I know. But why did you discontinue physical therapy? I do remember the trials and tribulations with your old therapist.

  2. yvonne nc

    I’m so glad you finally have a pain Dr. “Nipping it in the bud” is the way to go. Like you I hated taking pain meds, but learned to get them in my system quickly to avoid spiraling out of control.

  3. Erica

    I’m glad you’re finding a way to make things work, but I’m still upset at the Torturer whenever I think about it. Love your photos!

  4. Missy

    Thanks for the update. It sounds easy to say “just find another PT”, but we all remember when you have to go to someone else before your surgery last summer and it was less that successful! Do you ever think about trying to interview a few new ones and give it another shot?

  5. Meghan

    Do you ever talk to the torturer? you were such good friends I always thought things would work out given a little time. I think he really did care even if he did suffer from man-disease. They can’t help themselves sometimes. its a reflection of their gender.

  6. Kelly

    This is good! It has only been four months and I remember you saying it would take around 6 to get the full effect. Things will get even better. It’s all about the baby steps! Is physical therapy an insurance issue? Could you find someone to see you once in awhile to get you progressing?

  7. Tami

    I love you. I love your attitude. You inspire me everyday 24. I’m so glad things are better and I know in my heart they will keep getting better and better over time. You are so strong. I wish I had your resilience.

  8. Di

    I think that anyone with constant pain and the inability to use a limb to it’s fullest probably worries about further deterioration of the limb’s use. I wish technology would hurry up and catch up with the times. We need a ‘Thomas Edison’ in the medical field to come to the rescue of all those in need.
    DI

  9. Maddie

    its good to hear things are improving.
    You really do amaze me!

  10. Jan

    Perfect doesn’t exist, as I know you know. Better is good – and there’s no reason it can’t get better yet.
    I love you to death, girl.

  11. Alexis (Minnesota)

    Thank you so much for the update! I was wondering how that whole thing was going and you’ve written a wonderful explanation of the electrical stuff that even I can understand.
    Like others have said before me I hope you you can find yourself a new physical therapist. I realize that will be yet another emotionally difficult journey and step but there are so many good PT people out there…and if it would help…might be worth the emotional crap if it helps with the physical crap.
    If it HURTS physically more than helps well then…that’s that, eh?! Whatever you decide! Half-full/half-empty it’s still YOUR glass!! Thanks for sharing it!!

  12. Amy_in_Stl

    I remember hearing from someone years ago that when her husband had surgery she made sure he took his pain meds on schedule because if he let the pain get going it was hard to get on top of it again. This type of advice comes in handy when you find yourself injured. I remembered this 5 years ago when I fell and broke my ankle in three places. It definitely helped me heal without being dependant on medication but using it as a tool to keep the pain at bay. So thanks for sharing, you never know when someone may remember that seed you planted in their brain.

  13. Crystal

    To share a part of your life that is central to your being is not whining. I know – I’ve told you of my mom and somedays it’s hard to talk to her about her pain but I do because it’s important to her. If you need to vent about the pain and bad days you go right ahead. Those who don’t want to read it won’t and those who do will support whatever rant you get on!!!
    I’m glad things are better. Hopefully the future will bring the perfect back to your life!

  14. Anne Gibert

    I so admire your courage and honesty, and I am glad things are better than they were. And things will get better still as time passes. Your photographs and your writing are a real achievement. Your faithful following shows that those things make a difference.
    It is interesting to me to learn about stimulators from the point of view of a recipient. I hear about them from my son who is a pain doctor and who installs (is that the right word?)them.

  15. Fibrochondriac

    I hear you on the whining. But you can discuss your situation without whining and you did a good job, I thought. Sorry you have to stay on the pain meds. Even talking about them on my blog gives me the willies. Feel like the DEA will be at my door (or worse). Pathetic when you can’t use a “tool in the arsenal” without worrying about ramifications.
    Maybe someday you’ll blog about why you aren’t in PT? Maybe just babysteps and maybe someday you’ll be ready. Or maybe bionic ATMs don’t need PT? However it works, I wish you good luck!! And I’m glad you’ve got the pain down that important notch.
    And thanks for sharing…obviously people do care…and believe it or not you’re an inspiration for some people with chronic pain who want to get their lives back.

  16. DuchessOmnium

    I think you do a brilliant balancing job on the blogging front. I often (usually) forget your physical circumstances when you write about your OC life, your kids, photography, aging, dieting, etc. I think that is what you are wanting to achieve and you do it very well indeed. I am always a little bit surprised when you remind us just how much pain you endure everyday.

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