Real Life… The Wins and the Struggles

Real life: Well, it has been entirely too long since I have done a new blog post.  Part of it is that I have been extremely busy, part of it is that I have been healing and focusing on recovery, the other part is I feel like maybe a part of me hasn’t been ready to write this yet.

A lot of you have been following my journey.  First and foremost, I would like to say the warmest THANK YOU from the bottom of my heart.  A thank you for your love, support, encouragement and more.  For those that responded to my request to move on March 12, thank you.  The response was bigger than I could have ever imagined.

 

About Me

I feel like this whole process has taught me a lot about myself.  And I wanted to share more with you all on a deeper level.  I feel like after my surgery was over, I felt a sense of relief in that the fear of the actual procedure was over.  A fear that was so beyond crippling, I literally could barely function the months, weeks and days leading up to my surgery date.  That sense of relief that it was over was needed.  I was literally suffocating and suffering from the worst anxiety and depression ever leading up to it.  Totally normal for my circumstances I know, but it was tough times (as many of you witnessed first-hand).

So a few things I have realized recently.  I will start by saying before I share these intimate and deep shares, I need you to promise me one thing.  I share these things to be REAL… to be candid… to help you understand my story and situation full-circle.  What I don’t need or want is pity or anyone to feel sorry for me.  I don’t feel sorry for me.  So you shouldn’t.  Yes – what has happened is unfortunate, sad, unfair and more, but pity is not something I ever want.

 

Positives

So let’s start with some positives.  I am finally off the hard meds.  I am still on some long-term nerve medications and daily doses of Aleve for pain, but really my pain has improved drastically.  Do I still have pain every single day?  Unfortunately, yes.  However, I have recently accepted that pain is going to be a part of my daily routine for quite some time.  I need to be patient with the process, which is hard coming from someone who thrives off of instant gratification.  I am doing EXTREMELY well for my situation.  My timeline of recovery is going really well.  In fact, almost better than expected and honestly, better than most in my situation.  Again, its hard to compare since the logistics of my situation are not the most common for amputation (eeeek, I can actually say the word now)…but even so, I continue to hear from all of the medical professionals who have been a part of my journey that I am doing better than most and I am doing amazing.

I was able to hit my first goal of walking unassisted on my birthday.  While I hit this goal, I think in my mind when I set this goal pre-surgery, I meant I would be walking constantly that way.  I am at this point, with a limp (and some pain) I am still going through the desensitizing process (I will explain more about that later).  I started off only being able to walk unassisted for very short periods of time.  Totally normal, I know.  And honestly, time wise, in a very short period, however, I think in my mind I was unreasonable to think I would be just off and going as before that short after.  At any rate, I was more than happy to reach that goal at any capacity.

 

Truth

So what I realized recently is that I am very good at sharing my wins, however, I don’t share a lot of the hard times for the fear of someone feeling sorry for me.  I never want anyone to feel sorry for me.  I don’t feel sorry for me.  So you never should.  What are some hard things?  Mornings and evenings are tough for me.  Both often come with pain.  It takes me about 2-3 times the amount of time to get ready in the morning as it did before.  My home has stairs everywhere.  We have a huge staircase going up where all of our bedrooms are… we have stairs to the front door… stairs to the garage… stairs on the deck to get to the backyard.  I am constantly surrounded by stairs.  While they have gotten a little better, I still have daily struggles with them.  A lot of evenings I start to get pain shortly after dinner and have to take my prosthetic off to give myself a break.  Many times I experience swelling with that pain.  So once its off, its hard to get back on.  This results in me literally having to crawl up and down my stairs to get to my bedroom.  There are times when this process bothers me so much, I end up feeling dehumanized and in tears.  Again – no pity please.  I only share this so you can understand that while I have had a lot of wins and am doing well for my circumstances, again, there are daily struggles.

 

Weekly Schedules

I also have anywhere from 2-4 appointments a week.  Some of these are short like PT appointments.  Those are going really well, and I am very happy with my physical therapist.  While he hasn’t worked with an amputee before, he is doing his research and really bringing a lot to the table to help me.  My weekly prosthetic appointments are longer.  They can range anywhere from an hour and a half to 4 hours depending on what is being done that day.  As my prosthetist has explained, its like chasing a moving target.  My limb is constantly changing, so adjustments, new castings for sockets, new orders, new approvals are being done constantly.  Just when you get comfortable in one socket, the next week it doesn’t fit at all, causes pain and discomfort, and the process starts over.  With each new socket, comes a win for a smaller leg, but also a setback pain wise when things are new and tighter.

I know it sounds silly, but clothing is a hard thing for me.  While I posted a win for wearing jeans the other day, they are a pair that has zippers at the bottom of the leg and I had to leave them open to be able to wear my prosthetic with them.  I have been on a major hunt for jeans that fit perfect and equally look good, but to be honest, I have yet to find that.  You see, with my prosthetic I have what is called suction.  Which means I have layers and layers of leg liners to keep my prosthetic in place.  This in turn makes my right leg bigger than my left.  It is so hard to find pants that fit.  So I am constantly wearing workout clothes or maxi dresses because that is the only thing I feel good in.  I think I have done more online shopping and returning these last few months than in my entire life ever.  It’s so hard when you have a closet full of clothes you can’t wear because of a situation out of your control.  I am also missing my wedges and chunky heals.  Sounds superficial, I know.  But it’s the truth.  I am a girly girl at heart.  And I miss being able to get dressed up how I want to and feeling good and confident in what I choose to wear.  It is a constant battle with myself daily.

 

The Gym

I am finally cleared for some exercises!  Shorter than normal time frames and no running of course, but floor exercises and cycling for 20-25 mins I can do.  I have joined the YMCA to be able to use the bike, sitting stepper and weight machines to rebuild my leg muscles.  I just took my first Orangetheory class this past weekend during a personal fundraiser they did for me and I was able to complete the whole class.  I did have a pain set back due to the intensity, but it was worth it.  I realize how mentally taxing it is on someone who exercises a lot to going to no exercise at all for so long.  I feel so out of shape and I literally can’t stand it.  I miss feeling the adrenaline of my Orangetheory classes, outdoor runs, Pure Barre classes, personal training sessions and more.   Yes, I know I will get back to how it was before eventually….but the point is I haven’t had that for 15 weeks and I am missing it.  I think joining the YMCA now and getting in a new routine of movement will really help me.  On the positive, my arm game has really gotten better and I can do knee push-ups better and longer than ever.  Did I mention I also do dips on  my walker sometimes?  HA!  That is actually true.

I meet with my oncologist about every 6 weeks to check my limb and make sure I am still on target with healing.  I will start scans in the next few months as well to ensure I am still cancer free.  I know the anxiety will set back in when those get scheduled.  Again, I know that is totally normal.  It is just part of the process.

I did have an amazing birthday, full of surprises from my amazing friends, yummy dinners, family time, lots of sweet messages and more!  I even was gifted a running blade by a company called Endolite, which literally blew me away!  I am SO excited to start training on it when I am cleared to!

I hope this post doesn’t come across as a “debby downer” update.  To be honest, I really am thrilled with my progress.  I think sometimes its just hard when you are a “doer” and you can’t always “do” to the capacity you did before.  I think its also an adjustment when mentally you are 100% ready to be better and you just physically aren’t there yet.  Again, I know my expectations aren’t realistic sometimes, but they are what they are.  So for now, I keep up the positivity, I celebrate every single win, I use my experience to help others at every opportunity I can, and I keep on keeping on.

Until the next update!  Hopefully I can share some larger wins soon!

1 thought on “Real Life… The Wins and the Struggles”

  1. Jenn– you continue to amaze me with your drive, determination and ability to make lemonade out of lemons. You are an inspiration to all of us who have been lucky enough to be blessed with your presence in our lives. You have taught all of us – – even those way older than you – – what it means to live life with grace, dignity and selflessness. Your willingness to share your life lessons make you an amazing role model – – especially to your beautiful children, who will grow up believing that whatever obstacles they encounter in their lifetime, they will meet then head on persevere.

    With lots of love, admiration and respect,
    Aunt Alana

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