Life lessons

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There have been many life lessons that I have learned during the last 3.6 years.

One very important life lesson: Every story is different. There isn’t a single person who can say they know what you are going through. Doesn’t it annoy you when you are sharing your story and someone says, “I know EXACTLY what you are going through.” No you don’t, and here’s why.

I am the only person who knows the feeling I get in my chest when I go for an appointment and it is overwhelming. Overwhelming because there are so many factors when trying to figure out what to do to get me where I need to be. Where I want to be.

How can I go from having my leg wrapped every single day in layers of foam and short stretched bandages, to being in a compression garment to control the swelling which will allow me to get back into a shoe? It sounds easy, however, I am such a “unique” case, that the answer is complicated. And just for the record – can we find a new word to describe me and my situation? “Unique” is getting old.

One person may think a custom garment will work if it is lined in silk and has silver in it, and then another person will disagree. What do you do? One person may think a new custom carbon fiber brace will work which will allow me to get out of the orthopedic boot and into a sneaker. Another person will disagree. What do you do?

Let’s not forget one very important piece of this – I am on a hip restriction for life which presents many limitations. How will I be able to get these compression garments on by myself? They are hard enough to put on for a person without any restrictions. The “easy” answer seems to be that “someone” can simply help me. I didn’t realize that the magic fairy will deliver that “someone” to me. It isn’t easy to find someone to swing by each day and do these things.

The list goes on but who really needs a laundry list of issues? The road has been long and I put on my big girl pants each and every day and give it my all. Some days the smiles come easy and other days the tears replace the smiles.

Another life lesson I have learned: At times, I walk the journey alone. Especially in my heart and soul. My family, friends, medical professionals, et cetera, have been wonderful. Amazing, really. But I am the only person who feels the stress and the overwhelming feeling of “will I ever get my life back?”

I do know the only way to figure out if something will work is to try it. That can be terrifying when there is so much to worry about. The darn what ifs can make a girl stressed out! “What if my foot opens up again?” “What if I need another free flap surgery?” “What if I can never drive, work, be “normal” again?” It is easy to get up one day and decide, I am not going to stress or worry about x,y, or z and then the next day the worry and fear set in. It’s just a part of life.

Every story is different. No one person knows exactly what you are going through. One day may be tough but hopefully the following day will be better. Trust me friends, my journey started with a limb salvage situation and I am so thankful that we saved this leg and foot. There are truly no words to express my deep gratitude for what my amazing surgical team has been able to do. But! That doesn’t mean the journey has been easy.

Every day is not rainbows and butterflies. Sometimes it is okay to say, it sucks. It hurts. I am so confused. I want to move forward but I am stuck in limbo.

One of the most important life lessons: NEVER GIVE UP. Today may have been overwhelming, but tomorrow will be better. We are going to figure these things out. Trial and error. Tears and smiles.

Until next time, be well and go out and do a random act of kindness.

Jewels

 

 

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It’s complicated!

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Have you ever been super excited for something and you wait and wait and then the time comes and, yeah, it doesn’t go as planned? It’s kind of a bummer, right?!

I headed to Boston on Friday so I could try on several compression garments with the hope of getting out of this orthopedic boot and into a sneaker. A SNEAKER! I haven’t worn a shoe on this foot in 3.5 years. Can you imagine?

So at the crack of dawn, off we went. I was hopeful that things would go well and was prepared for any bumps in the road, such as the foot opening up again. My lymphedema therapist allowed me to bring several different samples of compression garments that may possibly work.

It is a rather complicated situation. My lymphatic system has been compromised and we have worked very hard to bring the swelling down and maintain that. I had 750ml of fluid from the knee down, and now it is controlled and that fluid is gone! In order to manage the lymphedema, I go to therapy a few times a week and my foot is wrapped every single day. And when I say wrapped, there are several layers of foam and short stretch compression bandages to control the swelling.

With these wraps, I cannot fit into a shoe/sneaker. So the idea is to get out of the wraps and into a compression sock/garment that will allow me to fit into a shoe. The garment will control the swelling while being less bulky.

In addition, I will transition from my orthopedic boot and get back into my carbon AFO brace. That is, if this type of brace will still work with my delicate foot. From the infection I had in my foot, it left the bone and Achilles tendon exposed for 9 months, and the numerous surgeries to heal that area has left it very fragile.

To add to this, since my new hip dislocated, I am at a 60 degree hip restriction for life. Yes, folks, for life. Do you see where this is going? There are so many moving parts! The compression garments need to ensure that there is no “pulling” or “shearing” in the foot area so it doesn’t open up that old wound. The garment also needs to be something that I can get on and off by myself which is no easy task with my hip restriction.

My carbon AFO needs to be able to support my drop foot but it can’t be to snug around the back of my foot, because if it is, it will open that fragile skin.  We won’t know if it will work until I can actually put it on.

The folks in Boston did not approve of the compression garments that I had with me. They believe I need to have a custom garment made so I wasn’t even allowed to try them on!

So the plan is to continue with the wrapping and orthopedic boot for now. I see my orthopedic surgeon in 3 weeks and we hope that someone can be there to see about having the custom garment produced.

We all agree that it is better to do this right the first time, even if that means I need to wait a little while longer. It’s been 3.5 years – a few more weeks and/or months isn’t that bad.

It’s complicated but progress is being made and that is a beautiful thing!

For now, I will continue to kick butt in physical therapy! My hamstring muscles are stronger, which is awesome. My quad muscles need a LOT of work and it is a struggle! While I still can’t raise my leg on my own, I practice every single day and I am confident that I will improve. The flexion in my knee needs to improve greatly and we continue to work on that as well. “Normal” extension in the knee is 140 degree flexion, and I am currently at 40 degrees. So there is plenty of work to do.

There are days where it feels overwhelming, but as long as I see progress, I feel encouraged. I will NOT be defeated!!

If you are out there reading this and have similar struggles, hang in there!

Until next time, be well and go out and do a random act of kindness.

Jewels

 

One year … a lot can change, yet some things remain the same.

Resilience is all about being able to overcome the unexpected. Sustainability is about survival. The goal of resilience is to thrive.”  – Jamais Cascio

Tomorrow will mark a year since I had my hip/joint and femur replaced! One year, friends. Holy crap!

I remember how terrified I was of that surgery. How many times I questioned the outcome. What if – should I – how about – you name it, I thought it. The reality was that I didn’t have a choice. The surgery needed to happen, and so, it did.

Here we are, one year later. A lot has changed, yet some things remain the same. I am working my ass off at physical and occupational therapy! And I have to tell you, it is NOT freaking easy! Learning to walk after 3+ years is HARD.

Thankfully, I am in a far better place than I was, yet, I have a way to go. A year ago I couldn’t walk 80 steps ON.MY.OWN!! No crutches, no cart, just me and my two legs. AMAZING. A year ago I didn’t feel as healthy as I do now. A year ago I didn’t know how much I was capable of, but I sure as heck do now.

Even though I still can’t drive, work, or do many of the things I want to do, I am getting there. I am reaching new goals. Feeling a little more confident in each new day and my soul is healing.

My friends and I still can’t believe that I am “high maintenance” after all of this time. Health issues take a toll on people and relationships and that is just how life is. The enormity and stress of it all will test the patience and resilience of a person. Stay strong! Tomorrow is a new day to start over and begin again. No-one ever said that this life would be easy, friends.

So here we are, a year later. Better. Stronger. Still working hard. Improving. Moving forward. Making it happen. WALKING. Freaking WALKING!!! (Okay, really only taking 80 steps, but, c’mon! That is awesome sauce!)

Whatever battle you are going through – don’t ever give up. You can work through it. It may not be easy, but it will certainly be worth it.

Until next time, be well and go out and do a random act of kindness!

Jewels

 

 

WALKING for the first time in 3 years! What?!

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Greetings, friends!

WOW! WOW! WOW! I have exciting news to share with you! For the first time in over THREE years, I have walked on my own, without my crutches. Without holding onto my PT or OT’s hand. Without holding onto the wall, a cart….

It will take a while to get to where I need to be, but it will happen! For now, I can take about 30 steps on my own and everyday I continue to work hard. For all of the moments (and there have been MANY) where it has been tears of frustration-sweat-heartache-pain-setbacks-blah-blah-blah, I DID IT!!

I wish I could explain to you how it feels to fully weight-bear on this fragile leg of mine and take these precious steps. It’s just … Odd. Different. Weird. With every step, it’s as though my mind is telling me that I am doing something wrong because it’s so abnormal to “walk” on this leg.

The first step is the most difficult as I have to talk to myself in my head and will my leg to move. I am sure with time and practice, it will become easier. Eventually, I hope my leg will function normally, or much better.

Hard work pays off my friends. You have to put the work in if you want to reach the finish line or anything close to the finish line. And.it.is.not.easy! I get it, I really get it. When you work for it and you see results – the feeling of pride – the triumph – it is truly indescribable! It also feels like – Freedom. Happiness. Peace. Achievement.

Even when your goal seems insurmountable, keep going. Never lose hope and never stop believing in yourself. When you reach milestones, it is amazing!

Three years is a long time to deal with a medical journey like the one I have been on, but it is worth it to fight the good fight. On the days where I doubted my strength and confidence,  my soul never wavered. Your soul knows the answer. When you quiet your mind and listen to your soul, you will find the strength you need to power through.

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I have a long way to go to reach my finish line but I can promise you this – even on my darkest days, I will search for the light to lead the path so I can continue on.

My wish for you is the same. May you listen to your soul and find the light you need to keep going. You can and will get there!

Until next time, be well and go out and do a random act of kindness.

Jewels

 

Reality check

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Hello friends!

Sometimes you need a reality check to focus and regain perspective. More on this in a bit.

Dislocating my hip really rattled me and I have been in a constant state of anxiety and fear. Fear of something else happening. Fear of the unknown. It is exhausting! I cry at the drop of a hat and have a difficult time sleeping.

Two weeks ago at PT, I walked for the first time in over THREE YEARS without my crutches! I was pushing a cart for support, but I did it! It was ah-mazing! Such a weird feeling to fully bear weight on my damaged leg. When my OT stood me in front of the cart and took away my crutches, I said, “Okay, now what do I do?” We all know the response was, “walk!” Easier said than done. How do toddlers make it look so easy? My leg didn’t want to move at first so I had to will it to move. Walking down that hallway without my handy-dandy leg sticks felt fantastic.

The next day when my nurse came and we took down the wrapping on my leg and foot, there was a little blood. Immediately I got nervous and thought, “here we go again.” Over the next two days, there was more blood and some drainage. We took pictures and sent them off to the nurse practitioner that I have become friends with so she could share with my surgeon. (One of the MANY benefits of having this beautiful soul in my life.)

I was off to my local wound center the next day so they could determine what was going on. Thankfully it is only a minor issue and we are hopeful it will heal. Each time something  like this happens, I make myself sick with worry and panic.

My doctor and I have discussed the possibility that I am exhibiting signs of PTSD. This never occurred to me but makes sense. It’s been a long road and perhaps things have finally caught up with me. It’s not to say that I can’t cope with situations, rather, I have been through a traumatic experience and over time, this anxiety and fear has crept in.

When I had a follow-up appointment with my surgeon, I asked why I can’t get to the finish line without setbacks. I just don’t understand why I have these milestone moments and the other shoe always has to drop. He said that it is an unrealistic expectation to think there won’t be setbacks. Again, I asked, why?? He explained that I am doing things (like fully bearing weight) that I haven’t done in years and of course there may be setbacks.

At first, I was thinking, “what a jackass!” He hasn’t walked in my shoes or had to live through these last three years as I have. But you know what, friends? The more I thought about what he said, the more I realized that he is absolutely right.

I haven’t walked on this leg in over three years. The skin on my foot is fragile. With each new goal I reach and the more weight I bear on this leg, the greater the opportunity for setbacks.

The conversation with my surgeon was a reality check. It reminded me that I just need to breathe. Let things happen as they will. I am making progress. Life is not always rainbows and butterflies, but life is moving forward. It may be slower than I would like and it may be filled with setbacks, but I need to remember how far I have come.

So I am going to work on easing my fears and anxiety. I am going to continue to work hard at PT and work on regaining my confidence. Things happen, folks, and you just have to roll with the punches.

If you are struggling with things in your life, I wish you well. I wish you peace. Fear and anxiety can eat away at you and I don’t wish that on anyone. Stay strong and know you are not alone.

Until next time, be well and go out and do a random act of kindness.

Jewels

 

 

 

 

When will the worry and fear go away?

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When you go through something as significant as I have over the last three years, it has a tremendous impact on you. Without even realizing it, it seems my body starts reacting to situations before I start to process it. My subconscious starts preparing me for what is about to come – or what is possibly about to come.

Since I can’t drive, I am fortunate enough to be able to take paratransit to and from therapy. This is transportation for disabled people. The unfortunate part of it is that you could be on the van for a very long time before you reach your destination.

 Monday was one of those days when I was on the van for almost 1.5 hours. After about an hour, my leg started hurting from sitting in that position with my brace on for so long. By the end of the night, I was getting a little worried, thinking maybe it was more than just sitting on the uncomfortable seat.

I went to PT & OT the next day where I told my therapists that we should take things slow just to be safe. We were careful with therapy but my hip started bothering me as the night progressed. By the end of the night, I made myself physically sick with worry.

I started thinking, “Is the hardware failing because I have been putting so much weight on it? Is my hip going to pop out again?!” It is such a terrible feeling to always worry about these things. When you experience so many setbacks and emergencies, I think it’s normal to worry. Right?! (By the next day, my leg and hip felt fine!)

Some people may not understand how I feel and I am okay with that. I feel as though some people think that I need to get a grip, but they haven’t walked in my shoes, nor have they experienced what I have endured.

Will I ever get to the place of not worrying? Will the fear disappear? I certainly hope so. After coming this far, I need to continue moving forward with peace in my heart. I don’t think it’s too much to ask.

My hope is that as time goes on, I will be more comfortable when something silly as sitting wrong doesn’t seem like a big deal, and more comfortable in my own skin. I long for the days where I don’t have to scare myself by thinking something is wrong.

Useless worry, my friends … it stinks. Unnecessary sleepless nights … gotta stop!

If you have experienced something like this, please share your tips and tricks with me on how you overcame the worry and fear.

Until next time, go out and do a random act of kindness.

Jewels

 

Never stop trying – keep moving forward.

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Greetings, friends!

I get a little nervous now talking about my triumphs because it seems that once I do, something happens and I take a few steps back. But I am “throwing caution to the wind” as they say, and I am excited to share my progress with you!

In physical therapy last week, I started practicing walking with only one crutch! ONE. CRUTCH. It may not seem like a big thing, but man, to me it sure did! I mean, it was only for a brief time but progress is what we strive for. My physical therapist and I were high-fiving with excitement! (Thank you, Anita! – BEST physical therapist ever!)

Things like this give me the encouragement I need and allows me to see that things will eventually come together. It is taking forever, I know, but if the end result is me being completely healed and walking again, well, the steps backward are bearable.

I do get nervous when I put additional weight on my leg and hip as I worry that my body isn’t strong enough to accommodate what we are doing, but it needs to happen. The prosthesis cannot fail. This leg has to get use to having my full body weight on it again. My body needs to get stronger. So I take a few deep breaths and move forward.

Do you remember the scene from the movie, Rocky, when Sylvester Stallone’s character reaches the top of the stairs and he throws his arms up victoriously? That’s how I feel when things come together and I make progress. I feel like, hell yes, I can and will do this!

It is such an odd feeling though, putting more and more weight on my leg. It’s almost as though my brain is telling me that I am doing something wrong because it has been so long since I have been fully bearing weight on this leg. Often times I wonder if I will get to the point when I can walk around freely, sans my crutches? I would settle for walking around with a cane or one crutch if it means that I can fully function.

That’s a tall order though. We have to get this swelling under control in my leg so I can have a greater range of motion. Bending my knee at a thirty degree angle won’t get me far. I need to be able to bend my knee enough so I can drive and do the normal things that I was once capable of doing. It would be awesome to be able to fit into a shoe and be able to bend enough to actually tie that shoe, along with many other things.

The days can be frustrating and there are tears shed, but still, I rise. And I always will.

Stay strong my friends! We are all in this together!

Until next time, be well and go out and do a random act of kindness.

Jewels