Tenacious ME
Tackling disabling autoimmune disease with obstinance and humor.
Celebrating Mobility- One Year with Frank the Tank
Have you ever made a decision that change your entire life? Approaching middle age at an alarming rate, its safe to say I’ve made a few of those, for better and worse, in my lifetime. Few have been so life altering as the decision to get my hip replaced. As I approach my one year anniversary with Frank the Tank, the name bestowed upon my trusty implant by my book club tribe, I’m finding it hard to put into words just how life changing that choice was. It turns out, more hinged on that working hip than I knew. Getting it fixed has given me back so much more than the ability to walk on my own two feet without a crutch. it has allowed me to regain parts of my life I feared were lost forever.
RA has stolen a lot from me over the years. Hobbies, career aspirations, time with loved ones, dreams large and small, and of course, mobility. Those who know me well, can likely easily name a dozen things I used to enjoy that I stopped doing. Fewer will know the reason I stopped was that I just could not do them anymore, because the price was too high. At some point, the joy of that hike in the woods was no longer enough to offset the days of agony that would follow. So, I stopped hiking. I stopped camping and canoeing. I stopped escaping to the shore when I needed to sort things out…as I learned to listen to my body, it asked me to stop, and I did. Even though it broke my heart. I told myself that healing doesn’t come without its share of pain, and tried to resign myself to a less mobile life. Always assuming once the meds and lifestyle changes I’d made did their job, RA would loosen its grasp and allow me to get back to them one day soon.
As the days stretched to years and medications provided relief but not recovery, I began to think about the damage that had been done. Even more about the damage I might be doing compensating for that damage. By this time, a cane had become a constant necessity, as my left hip refused to hold up to its side of the deal. Using a cane was causing my already damaged right hand and wrist to become more stiff and sore, my fingers curled, hand unwilling to open fully. I saw a crossroads ahead. I could carry on as is, and lose the use of my hand, stop using a cane and resign myself to a seated life, or, get someone to help undo the damage that had been done. Too stubborn to resign myself to life in a broken body in a world full of medical miracles, I started to push for a hip replacement, knowing long before the first scan that the hip was toast.
Several rather frustrating appointments later, the evidence was in, the hip was very much toast, it would need replacing, it would take a year to find the doctor that agreed with my analysis, that waiting until I was older, as the first ortho suggested, was foolish. Within a month of meeting him, Dr. Brooks would replace my hip, giving me a second chance at a mobile life. Clearly a big picture kind of guy, he immediately expressed his concerns that continuing to use the crutches that I had traded my cane for 9 months before, would in time destroy my already damaged hands, wrists, shoulders, and elbows. I remember holding back tears of relief as I realized, finally, there was a doctor who would help me, one who saw all of me. Not just RA, not just a hip in need of replacing, all of me, the entire patient. For the first time in the 5 years since diagnosis, a doctor asked me what quality of life meant for me. What is my quality life? I told him about the active life I’d left behind, about how much I wanted to do all of those things again. I told him I missed sharing my love of the outdoors with my sons. Without the slightest bit of hesitation, he told me we can do that, let’s start by replacing that junk hip. Finally, I’d found a doctor who believed I should fight for my mobility, one who announced that he was in my corner now and would help me reach my goals.
One hip replacement and several months of physical therapy later, I set down my crutches and took my first steps without assistance. A year later, here I am, walking on my own two feet. It seems like such a small thing, but it truly has changed everything. With two free hands and a working hip, I am able to lug things, move things, and keep up with household chores again. Regaining independence has been a balm to my soul. In September, I took my first walk on a packed sand beach and I cried tears of joy. By spring, I no longer needed a cane, even on uneven ground, as I regained strength and balance. Regaining the stamina and strength to garden, to wander outside, to walk on the beach, has been life changing. No longer simply going through the motions, I am alive again. I’m making plans I could not have even considered a year ago. I can take a walk when I am frustrated and angry. I can say yes when invited on an adventure with friends. I can plan adventures of my own.
It’s been a valuable lesson in quality of life, and living with pain and limits when you do not have to. A lesson about the importance of speaking up and being persistent, of valuing that quality of life enough to fight for it. A lesson I will not soon forget. RA is not going anywhere, it continues to do damage. Never again will I allow it to steal pieces of me without a fight. I’m sure it’s not the last hill I will encounter, but it’s reminded me that the view from the top is worth the climb.
This weekend, I will celebrate Frank the tank with an island camping adventure with my book loving tribe. An adventure I’ve turned down in the past knowing it was just going to kick my ass. There may be some tears as I walk on the dock and board a boat for the first time in years, but they will be tears of joy. Tears of triumph as I return to the sea and the life of outdoor adventures I love so much.
Tenacious ME 
Pingback: Battling For Care – Tenacious ME