My Grandma always said, “Inch by inch is a cinch. Yard by yard is hard!” Certainly, these are words to live by and the past couple months have been no exception. Life is an adventure with new twists and turns at every point. Although I become overwhelmed at times, I remember my Grandmother’s words and take a deep breath.

 

Keep on walking

The past several months have been interesting to say the least. After all these years of being able to walk and only having to use a wheelchair for distances in the past decade, I developed a couple stress fractures in my feet. It’s not the first time I’ve had stress fractures, but at least this time they were not in my femurs! There is always a silver lining.

It has taken the fractures much longer to heal than in someone not faced with a unique walking gait such as mine due to my ankles being fused and other anatomical differences that result from having sacral agenesis. My doctors have determined that my bones, although not in perfect condition, are not brittle. This is also fantastic news. I will continue taking Vitamin D and calcium supplements and eating my 3 daily servings of dairy. I love dairy!

Going forward, I am going to need a reevaluation of how I walk and how it impacts my bones after walking for my whole life. My feet are not able to compensate successfully enough anymore. The bones, throughout the years, have doubled in size, to account for the force I put on the front of my foot during my stride. It’s so strange because when I was little I had bilateral club feet. I had to have corrective and other types of surgeries as I grew. I did wear braces for a while, but I was a child on a mission and walked independently without crutches.

The medical community still has no idea how my body was able to do this, but I did and I did it well. Now, after all these years, I will be getting braces made for my lower legs. Sure, at first I was a little upset, wondering what kind of shoes I would have to wear but then I realized that if that is what will keep me walking more then I’m excited! With braces on my feet, I should not fracture repeatedly. I’m looking forward to the assistance in keeping me on my feet and I know I’ll find some cute shoes.

 

“Sparky,” my spinal cord stimulator

During the time of the stress fractures in my feet, I’ve also experienced increased spinal pain. I do have the Medtronic’s Spinal Cord Stimulator (a.k.a. “Sparky”) which helps alleviate neurological pain, but it isn’t sufficient for bone or musculoskeletal issues.

I went to see my orthopedic surgeon for my spine and it turns out one of my lumbar vertebrae is fractured all the way across. I’m having a spinal fusion this week to correct this issue. I’m looking forward to getting to the other side of the surgery to recovery and beyond! After recovery, I will be able to get a Walking Gait Analysis to aid in creating appropriate leg braces enabling me to walk without fear of further fractures.

I’m so excited to get to the other side. Sure, spinal surgery is never easy but then I’ll have a more stable spine which is important in alleviating back pain but also aids in my ability to stand and walk. All of these contribute to, and increase, the quality of my life.

These issues with my feet and back, although painful and limiting, are my “normal”. But now, I am dealing with a whole new problem I’ve never faced before—tachycardia or fast heartbeat. I had to see a cardiologist.

 

A new challenge: tachycardia

I’ve always had a very fast heartbeat and, in the past, it was thought that it was related to pain. However, it became very bothersome to the point where I was short of breath, having chest pain, lightheadedness, and palpitations. It turns out my heart rate was spiking over 200 bpm. This is not healthy and can be dangerous.

Luckily, after many tests, they have found I have Sinus Tachycardia (a normal, but fast rhythm) with premature ventricular contractions (PVCs) and premature atrial contractions (PACs). These are heartbeats that come sooner than they should. They are also the types of arrhythmias that elicit a pounding sensation and fluttering in the chest. The doctors put me on a medication called a beta blocker to slow down my heart rate.

Apparently, I have an electrical problem in the conduction of the heartbeat, but, the good news is that it is benign. It still needs to be treated because having such a rapid heartbeat can damage the muscle of the heart. I’ve been on the medication about two weeks now and it is keeping my heart rate more consistent. However, I am currently wearing a heart rate monitor which is being read 24/7 to ensure my heart rate does not spike too high nor plummet too low. We have to take these precautions because I will be having surgery and put under anesthesia.

I’m quite blessed with all the positive findings regarding the functioning of the heart itself and its anatomy. But this whole episode has been challenging for my husband Mark and the rest of my family as well. This is a whole different world and different from the one we have known focused on sacral agenesis. I know that probably sounds strange but this episode has not been within the “normal” realm of things for us whereas spinal surgery and physical pain are.

Never have I seen my husband Mark so worried. Yes, he’s concerned anytime I’m in pain or have surgery or spinal leaks, but the heart is different. I wasn’t able to do normal daily activities without almost passing out. It seemed that someone was always with me at the house to keep an eye on me even while I worked. This has been a time when Mark and I have become even closer (I didn’t know that was even possible). We’ve spent more time just holding hands, together with a little extra hug here and there. I was actually so concerned about Mark that I didn’t think about the gravity of what was going on with me which was probably better. I have been pretty calm throughout this new challenge. I’ve talked about it a lot which served a means of processing these new phenomena. Now, it seems, the beta blocker is maintaining a healthy heart rate. I will find out more after an upcoming appointment.

I was actually so concerned about Mark that I didn’t think about the gravity of what was going on with me which was probably better. I have been pretty calm throughout this new challenge. I’ve talked about it a lot which served a means of processing these new phenomena. Now, it seems, the beta blocker is maintaining a healthy heart rate. I will find out more after an upcoming appointment.

 

Part of Stella’s pack

In addition to Mark and my family being even more attentive and wonderful, our lovely yellow lab, Stella, is “coming into her own,” so to speak. She is oddly attentive to me. She’s always been sensitive to me when my pain increases or I don’t feel well, but this time she stays by my side nearly all the time. I even called our vet to make sure she is okay. We checked her ears and mouth, everything we could think of to see if anything was wrong with her. She’s healthy which is great. She’s just sensitive to me and doing what dogs do.

Apparently female dogs are more intuitive and sensitive than males. Right now, it’s nice to have her at my feet making sleepy noises enjoying her mid-morning nap. She certainly is an excellent family member. People could learn so much from how animals treat each other and people (their pack). I’m so blessed to be a part of Stella’s pack. I will miss her for the couple days I’m in the hospital for my spinal surgery and she will search for me but it’ll be a sweet homecoming and I know I can count on her to stay by my side. I’m so proud of the sensitive dog she’s become (like I had anything to do with it, it’s all her).

So reflecting on the past several months, I have encountered a handful of medical challenges but all the while enjoying Mark, family, and friends and our Stella. I am looking ahead to surgery in a couple days, I realize how much I have to look forward to. It’s further motivation to eat well for healing and to take it, “inch by inch”. Having the patience to get through each step is integral to a great outcome.

 

Break on through

Of course, if you are one of my regular readers, you know that this reminds me of a song: Break on Through by the Doors, “Break on through to the other side…” In a couple days I’ll be on my way to the recovery side of things.


Click here to see other stories by Julie Hemker in her ongoing series, “My Life with Sacral Agenesis.”

8 COMMENTS

  1. Julie, Somehow I missed this page, which is excellent and could serve as a partial index to newbies following your ongoing series on your life with Sacralagen.
    Also, this month recognizes Migraines, one of
    your painful experiences. I strongly urge that anyone who has SA, or anyone affected by this syndrome either directly or indirectly, read and share your content on “thedoctorweighsin.com”. Your anecdotes and the facts you present are inspirational, educational and valid!

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