Tag: phantom limb pain

Picking Apart Phantom Pain

Picking Apart Phantom Pain

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The Real Mental Side of Phantom Pain

 

Ok, let’s talk about Pain. Not just any pain, but the “real” phantom pain.

It comes on without warning.

It can destroy our mood, our productivity, and our confidence.

When it does happen, and for amputees we will all have the pleasure of experiencing it at some point on our journey, it’s enough to cause us to doubt we will ever be able to function again because we can’t see an end to it in sight. It’s the most disabling thing about being an amputee because we cannot control it.

Just two weekends ago I experienced one of my many episodes of phantom pain. I was fine when I woke on Sunday morning, enjoyed a few hours of “normalcy” then out of the blue, like lightning strikes, I was seized with a multitude of sharp, knife driving pains, in the bottom of my non-existent foot!

At first it was just startling and I was wracking my brain as to why it might be acting up. You see, for me, I know what things might cause me to have a flair up of pains from the activities of the day or night before, but not this day. Nothing I could have done would prepare me for this nor could I comprehend what had made these phantom pains come on.

As the day wore on these flashes of pain came more sudden and more often. They are so real feeling that my “foot” was getting sore from all the stabbing.

The prickles on the cactus and thorns on the tree remind me of the sharpness of my phantom pains

 

If that isn’t a mental attack on the brain I don’t know what is!

If you are an amputee you need to make sure you have a toolbox of info and memories to use as you navigate throu9gh each episode of phantom pains.

Join me today as I discuss what a toolbox is and how you create one.

Remember to be kind to yourself when these pains hit. They will try to crush you and break your spirit but you can and will get stronger with each experience. Just know that it’s ok to shut down for a while as your head tries to understand what’s happening to your body.

You are strong enough and you will make it through.

These episodes don’t last forever, and you will soar once again.

 

Be the warrior you were meant to be and rise up!

 

And as always,

Be Healthy,

Be Happy,

Be YOU!!!

 

much love,

 

Reality Check

Reality Check

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Are you seeing amputees doing all the things you could only dream of doing? Thinking you are so far behind that you could never get there? Or see them doing amazing things, “pain-free”?
Well, in the spirit of complete transparency, and shedding light of the realities of being an amputee, I have had a hard couple of days.
Yep! Even 4 1/2 years out. Do they happen often, no, but phantom pains, poor fitting socket days and just plain “off” days can come out of nowhere and hit me like a freight train!
This weekend was no exception.
I has been out hiking, doing what I love, and even though it was a tough hike I got through unscathed…. However, the next day, I’m sure my muscles were so taxed that my phantom pain came back in sharp stabbing droves, meant to take me out in mere moments!
The reality check is, we all have our journey, whether you’re an amputee or not. You cannot compare yourself to anyone else, because there is no one like, who went through what you went through, and can handle it like you. Our pain tolerances are different, our illness that led to our condition are difference, our age, activity level and our gender are all different.
Most people think that going through amputation is the hard part, but in reality, it’s the first 1-2 years after, in which you have to get fitted for a socket, place something heavy and cumbersome on your body, and relearn to walk all over again. The fit takes patience and time to adjust, you fall, you get rashes, you break down and get frustrated.  And when you finally get everything to feel “good” you have atrophy and drop weight and your limb changes and you start the whole process ALL OVER AGAIN!!! Sometimes even just 1-2 months after you finally get a good fit!
So whether you are struggling on the path you are on in life, or finding it debilitating to keep moving forward as an amputee, know that this is all part of the journey. You have to experience the ups and downs to learn and become stronger, physically, mentally and emotionally. I can tell you all that I’ve gone through but to truly learn from it and appreciate it, you must go through it yourself. And your journey won’t look like mine or anyone else’s, your journey is YOUR journey. Embrace it and enjoy it for all its worth. You’ll be amazed at the person you’ll become as you wrestle with the challenges you’ll go through.
This week, listen to yourself. Know when you need a break and take it. Spend time reflecting on what’s got you blocked or bound up and know that this isn’t the end, just a hiccup.
Take a deep breathe, and rise up again and give another crack at it.
Baby steps, little by little, keep you moving forward.
Don’t give up and believe in yourself!!
And as always,
Be Healthy,
Be Happy,
Be YOU!!!
Much love,
Angie
Get a Grip

Get a Grip

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Dealing with Phantom Pains, Part 2

As a continuation to last week’s podcast on Phantom Pain, and how my faith has helped me through, I thought I would add in other ways you can try to deal with these inevitable pains we go through, as amputees.

If you experience phantom pains you know how unpleasant and downright horrible they can be. They can mess with your head, bring you down, and keep you from sleep.  They don’t discriminate, and if you’ve never had them, be forewarned, you could still have them rear up even years down the road.  My prosthetist, who is also an above knee amputee, has been an amputee for 20+ years, and just last week experienced them for the first time, and the full blown kind.  It amazes me that no one is safe from experiencing them, in one form or another, and at any given time in their amputee life.

Which brings me to the point I tried to make in the last podcast, and will, again, reiterate it here:

You need to learn to deal with these pains, realizing that they come and go, no one is safe from them, and your mindset about them will ultimately determine how you push through (or not), to rise up and continue on with your life.  They may knock you down, but they don’t have to destroy you.

In this podcast I discuss many different ways you can help yourself deal with them, but ultimately, I believe you need to become really strong, mentally and emotionally, to win each battle, when they come.

 

Listen in to this week’s podcast and see what might be able help you the next time phantom pains strike.  And they will….. will you be ready to take on the battle?

 

 

Do some research. Understand your options. Research neurotransmitters.  Understand that what works for one person may not work for you so be open to that possibility and don’t be afraid to keep trying different options.  And remember, the more you understand that phantom pains are a part of your journey, the more capable you will be with overcoming them, and not being defeated by them, when they do arise.

Put on your big girl boots and push through!
I’m a “Mind over Matter” kinda girl.

 

I believe being outside and staying active helps me push through bouts of phantom pain. How about you?

 

Remember, you are not alone. and you CAN and WILL make it through it.

 

As always:

Be Healthy,

Be Happy,

Be YOU!!!

 

Much love,

Angie

 

Abracadabra

Abracadabra

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Phantoms and Serving Others: How do they fit together?

 

Ok, so maybe it’s not THAT easy to rid yourself of phantom pains, but it does help.

 

SERVING.

When we distract our minds then we can free ourselves, even temporarily, from pain.  So why not help others while you help yourself?  I can’t think of anything better than serving where I’m needed, helping someone else out, while I get an opportunity to keep so busy that I don’t think about my own problems.

Six years ago my oldest son started to go part-time to a Christian school here in the valley. I found out that they go up to Williams, AZ to Lost Canyon Young Life camp every Fall and always need parent volunteers and I thought I could help.  I knew no one and I was actually already struggling with knee pain and surgeries, but I thought what better way to meet new people and distract myself from my own misery.

To say that this was life-changing for me would be an understatement!  I meant fantastic new people, made great friends, grew in my Faith (which proved to be invaluable as amputation time came), and I helped the school fill a need.  Did my knee hurt? You betcha!  Did I notice it while I served? Not as much as if I had sat around and felt sorry for myself.

You see, when we sit around with an idle mind we, as humans, tend to dwell on our hardships.  We let that inner voice go from positive to negative in a heartbeat.  Who needs that?  It doesn’t help your situation or circumstance and actually makes you miserable to be around.

As the years passed, and so did my years of being at this retreat, I learned something about myself.  I use activity to take my mind off my own problems, pains, and worries.  Retreat became more of a saving grace for me, while I blessed our students.  Who would’ve know? And then that became the key to me pushing through pain, and eventually phantom pain. You see, phantom pain is not “real, physical” pain but nerves that don’t know what to do with the signals being sent out.  In this case there isn’t a lot we can do  to “physically” curb those feelings, we must dig deeper and address them through our mind.  Training our brain to function differently now that we are missing a limb.

If I find myself being active, in a new place with beautiful surroundings, I am more apt to move past my pains and focus on the good around me.  Take a look at where I was this past week in the pictures below:

Iron Horse Worship Center

 

The grounds are so clean and beautiful, and the weather is so much cooler than Phoenix.

 

The magnificent dining hall I have served in for the past 6 years.
This year was my last as my youngest is a senior. It was hard to say good-bye.😥

In a world were there is so much need for servers, and volunteers, why not get out and do something good while you reap the benefits of distracting yourself from your own pain AND doing good?  Also, whenever I spend time serving others I notice that I am riding on a cloud for weeks following my serving.  There is something so magical about helping others through our own valleys.  Try it!  You may be pleasantly surprised by the outcome.

 

Oh, by the way, did I mention the night skies?  Awe-inspiring is all I can say!

 

 

 

It’s simple, like magic and a slight of the hand:

 

Serve others before yourself.

Give of yourself and watch how God work in and through you.

 

Abracadabra, let your pain go, use distraction, and like magic, you can have some peace from your pain.

Find a way to get involved in your community. Give to someone else that’s hurting or worse of then you, believe me, there is always someone who is struggling with more than what you are. Find what’s good about your life, your circumstance, and then use that fuel to help others. You will be glad you did.

 

And as always:

Be Healthy,

Be Happy,

Be YOU!!

 

Much love,

Angie

Enjoy the Journey

Enjoy the Journey

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Traveling Home Once Again

Me and Dad traveling back to Chicago after his stay with us.

 

Coming in for a landing, Chitown.
City lights, oh how I’ve missed you!

 

 

O’Hare Airport doing it up right! Love this airport.
God Bless America and the Veterans who fought for our freedom.

 

I am HOME!  Chicago will always be my home, no matter how long we may be apart. Every year my family travels back to Chicago, where most of our family lives, for visits; one in the summertime, and one near Christmas. The pandemic made other plans for us this past year. We were very overdue for this trip.

Since I haven’t traveled much for almost 2 years- no flights, at least, I was a little rusty on packing. I hate packing for trips as it is, but when you are an amputee or have other medical issues, then packing becomes a bit more time consuming and anxiety building. There are so many things to remember to bring, then having to make sure it all fits. Whew! What a task.

This podcast is very unique as it is the first one I have done away from my home setup. This one may sound a bit different because I used different equipment and actually recorded outside on the deck at my parent’s house-you may hear cars and wind in the background. But keeping with my “keeping it real” vibe, this shouldn’t surprise you, and actually I am pretty impressed with the quality of this episode, all things considered.

I hope you can feel the love I put into this one, as I was recording in a place my Mom and I use to sit and chat when I’d come visit. I recorded on the deck that holds many memories of BBQ’s with my whole family over, moments where my mom was standing and smiling down at me while I played with my boys in the grass below (grass was always fun to play in since we have none in Arizona!), watching her watch her hummingbirds flit in and out of the deck’s feeders, and so many more. I have laughed, listened, cried, and hugged the people I love on this very deck, it only seems fitting to have an episode done here, too, to add to the memories.

Being here in Chicago has been such a blessing, even through the pains I have been feeling in my residual limb. As I discuss in this episode, though, we need to see past these painful moments and live for the positive things going on around us, or we will miss the good in life. What I feel today, may be gone tomorrow and I don’t want to miss any more moments with my family, so I resolve to buck up and push through, knowing less painful moments are on the horizon. I pray you do the same. We are all on a journey, and this journey will be filled with endless ups and downs. We need to take the good with the bad and know that with every hard episode we go through, a better, more joyful one will be right behind it.

Don’t fret. Don’t think negative thoughts. Chin up, Warrior, life will get better.

Find the positive when it seems like it’s not there. Surround yourself with positive people and keep your chin up in the hard moments, realizing that this will pass and it’s just one moment in your life.  Your attitude will dictate your outcomes, so stay positive, happy, upbeat. Even when you’re hurting, find the strength to smile. You’ve got this, Warrior, you’ve got this!!!

 

As always:

Be Healthy,

Be Happy,

Be YOU!!

Chitown 2021- We Are BACK!!

 

Cubs win! Cubs win! Cubs win!!

 

Water Tower- Michigan Avenue

 

Much love,

Angie

The Nerve of Some People

The Nerve of Some People

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Plastic Surgeons and TMR Surgery:
Tackling Phantom Limb Pain

 

Everyone deals with pain at some point in their life, but when you have an amputation you know that there is a possibility of living with a pain you can’t even touch! When the missing limb is burning, itching, throbbing, or sending sharp pains with every movement it can be unnerving -pun intended- and hard to get past.

I, like so many other amputees, have dealt with phantom limb pain since day one. Most of the time I can handle it, sometimes in the quiet of night it can be hard to fall asleep, but I have been able to deal with it.  The point when I could no longer take the pain was when I couldn’t even walk into my kitchen without the pain being so sharp and unpredictable that I stopped moving!  It takes A LOT to stop me! I have a high tolerance for pain, and this was just too much for me. I have to say, this freaked me out and made me worry that maybe this was going to be like this for the rest of my life…. and then I stepped back and gave myself a pep talk. I cannot allow myself to participate in defeatist talk. Negativity cannot reside in me, I won’t allow it. So, what did I do? I had an appointment with my prosthetist and my surgeon who performed my amputation.

I was scheduled for an MRI to see if there was a neuroma, sure enough, there was one, exactly where I felt the pain. Symptomatic, great!

Next step? My orthopedic surgeon, Dr. Judd Cummings, told me that I needed to see a plastic surgeon, and the one he suggested, who knows how to perform a surgery called TMR (Targeted Muscle Reinnervation), Dr. Roni Prucz.  He put his confidence, and my future, into this doctor’s hands… and I believed in him, so I went.

Dr. Roni Prucz
Phoenix Plastic Surgery

 

Now, I didn’t have ANY desire for yet another surgery, but I promised I’d go talk to him.  What harm could that do?

….And before I knew it, I was scheduled for surgery! Dang it!

Dr. Prucz seemed confident that he could successfully help me with the pain on the back of my residual limb, where the neuroma was, but the sharp pain that I felt ripping down my non-existent shin, he couldn’t promise that. I couldn’t pinpoint where the pain was originating from and so he would just have to do exploratory surgery in that area, and hope for the best.

Without the neuroma, my gait has become so much better, there was no more pain there. However, the sharp pain, in the other area of my limb, returned about 6 weeks after surgery, not as often and not as intense, but it reared its ugly head and my fears of life-long pain returned.

No matter what, I will rise!

 

This is where I needed to advocate for myself and not just say, “Oh well, we tried.” That wasn’t good enough for me. I needed answers and I needed this to be fixed, or at least feel better. I saw my prosthetist, then Dr. Prucz, and then over to Dr. Cummings, just trying to figure this out, gain perspective, and to see if anyone had any ideas. I would NOT rest until I had direction.

Yesterday I took my next step in helping myself, I tried a sympathetic nerve block in my L3 and….. so far, so good!!!

I needed something that didn’t require another surgery and this was a good next step, and quick. If it works then I may be looking at having that nerve bundle ablated. I’ve been moving around for 24 hours now and not feeling that pain. This is a good sign, but I hesitate to get too excited, too soon. I will do my thing, I will beat on my leg through my high level of activities, like hiking, and really push the limits of my leg and socket. For me that’s the best way to really test out what I’ve had done.

I really test my leg and socket whenever something new has been done to either of them

 

I hope this podcast gives you some insight to TMR surgery, if you’re a candidate, and how to go about finding the right person to perform this on you. As always, I’m here for you! Send me an email or leave a comment. I’d love to chat and answer any questions you might have about what I went through. Talking to people who’ve been through something will help give you perspective and  maybe even curb fears you might have.

 

 

This week I want you to let go of the past, start looking to future. We cannot move forward if all we are doing is wishing we had back what we use to have. If you’ve lost a limb, it’s gone, there’s nothing you can do about it. The choice is up to you how you’ll view this difference. The choice is yours on how you will pursue your future. You can have a pity party, or you can decide to set new goals, change direction from the course you use to be on BEFORE losing your limb, and rise up!

The time is now! Dream big! Set new goals.  Adapt and move on with your life. I know there will be setbacks, I know there will be moments of pain, but they do not define you. Your attitude and what you do with your circumstance DOES!  What are you going to do? I want to see you thrive! I want to see you challenge yourself! I want you to rise up and conquer, because YOU are a warrior!  Now go out and crush it!

 

Until next time:

Be Healthy,

Be Happy,

Be YOU!!!

 

Much love,

Angie

 

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