“Breathe. You’re going to be okay. Breathe and remember that you’ve been in this place before. You’ve been this uncomfortable and anxious and scared, and you’ve survived. Breathe and know that you can survive this too. These feelings can’t break you. They’re painful and debilitating, but you can sit with them and eventually, they will pass. Maybe not immediately, but sometime soon, they are going to fade and when they do, you’ll look back at this moment and laugh for having doubted your resilience. I know it feels unbearable right now, but keep breathing, again and again. This will pass. I promise it will pass.”
— Daniell Koepke
I have printed out this quote, framed it, and placed it beside my bed as a daily reminder. I forget that I have been here before – 14 years ago I was going through very similar struggles, feelings and emotions. And I made it through. This time though, it is different. I can’t explain why, or how, but it just is.
So by now, if you have been following me, you all know I have arrived back home in Florida. To say that life has been an adjustment would be an understatement. This has been by far one of the most difficult weeks of my life. I’ve been tested to withstand the highest levels of pain I have ever had to endure. I am trying to adjust to my new life of totally having to be reliant on my family for everything. Anyone who knows me is aware of how independent I am. I am also extremely stubborn, so I’m having a difficult time asking for help and accepting that this is my life now, not just for a few weeks but practically for the next year.
This week consisted of trying to get into somewhat of a routine. I am up and out of bed by 7 am. I need to do some leg exercises before standing to help blood flow or else when I stand all the blood rushes through my leg and makes it extremely painful. I need to start my morning medication but prior to that, I need to get some food in my stomach. My appetite has been non-existent due to all the medication I am currently taking, so eating anything these days is a victory. Immediately after that I make my way on to my couch where I get my daily injection of blood thinners to prevent blood clots. They are administered in my belly.
From there, my first limb lengthening begins. It is done by a magnetic contraption, which goes over my leg, and a session lasts about two minutes long and they are done four times a day. It is extremely loud and painful but I know it’s the only way my leg will grow back to the size I need it to be. I then get cleaned up, dressed and start my physical therapy (PT).A physical therapist comes to my home three times a week and we work on continuing learning how to walk, lots of knee strength exercises, and mobility. I will continue with in-home PT for about a month before transitioning over to HSS rehabilitation. Sessions last about an hour, but I need to be doing the same exercises on my own 6-8 times a day, every day.
Believe it or not, the days seem to fly by. I am always busy attending to something, whether it be doing my lengthening or getting in my physical therapy. I am also constantly just walking around the house trying to regain a sense of memory of how to walk. As of now, I was cleared to put 50 pounds of weight down. Before I know it, it’s the evening and it’s time for nighttime routine care. My sister and my mom have been taking turns coming and assisting me. I never knew how difficult taking a shower could be until now. After trial and error, we have come up with a solution that works. I have a shower chair, which makes it convenient to get in and out. If I’ve learned anything it’s that there’s no modesty in medicine! We then get dressed and it’s back on the couch to do pin care. Very important!!! This is when all my pin sites are sterilized and cleaned. My mom and sister have a competition of who can accurately accomplish this task in the shorter amount of time. It’s then usually time for my last lengthening. From there, I wrap a cold compress over my leg to keep the burning sensation to a minimum, and then it’s time for bed. Oh my! So my husband bought me this amazing body pillow, which makes you feel like you are laying on a cloud. We have come up with a position that allows me to sleep on my side but the trick is to essentially stuff my entire body with pillows so I don’t move. The body pillow wraps around my legs so the external fixator stays in place. I still have a significant amount of bruising under my leg from where they had to break my bone so the less pressure I apply the better.
With all of this being said and done not a single day would be made possible without the love, support, and caring attention from my amazing family. Throughout the entire time of my hospital stay, I was constantly surrounded by family and friends. Ones whom I love so dearly! It meant so much to know and see how much I am loved. From seeing my nephew and him surprising me with his beautiful drawing and making me laugh with his jokes, to being able to have girl talk and catch up on life with my sister-in-law; which was a great distraction for me; to having my cousins, aunts and uncles come to visit, and even seeing family friends who brought me the most amazing soup!
My mom has been my rock. She is there for the times that I break down and fall into her arms. She lifts me up me when I have no more strength left. She stands and fights for me when I’m crashing with doubt and when I find myself surrounded with fear, she comes and pulls me back in and anchors me with reassurance and love.
My sister; My mammoth. She is the one who brings me joy throughout all of this. She makes me laugh, she does everything and anything I need to make sure I am comfortable. She not only cries for me, but with me. Her willingness to learn about how to care for me and eagerness to dive right in is so commendable. She continues to remind me that we are in this together and I couldn’t/wouldn’t imagine going through this with anyone else.
Then there’s my husband, Paul; Bless his heart. He has been so patient, nurturing, and gentle. He brings on the tough love. He doesn’t allow me to stay in the negative and forces me to see the big picture. He’s taught me that it’s okay to cry, but not for too long and that there is no sense in wasting my energy on the negative. Instead, I should be using it to remain strong and positive. He believes in me, and he refuses to see me give up.
Then there’s my dad who is my comic relief. He always knows just what to do and say to make me laugh. And last but certainly not least my dog, Mia. There are not enough words to accurately describe how much love, comfort, support, and companionship she offers me. We have such an unbreakable bond and I know I couldn’t get through this without her.
The best kind of people are the ones who come into your life, and make you see the sun where you once saw clouds. The people who believe in you so much, that you carry that with you and it ignites the fire inside of you to never give up. The people who love you, simply for being you. They are once in a lifetime kind of people. Those are the ones who you keep, because they are the ones who will get you through your darkest days and the ones who will forever hold a special place in your heart.
As I continue through my recovery, I am looking forward to my first follow up appointment with Dr. Rozbruch next week in New York. Until then, by for now!
This series is by Gabrielle Sholes, a patient of Dr. David Levine and Dr. S. Robert Rozbruch, at Hospital for Special Surgery (HSS). This weekly series documents her experience with ankle fusion and limb lengthening surgery that will allow her to walk pain-free and improve her quality of life.