-A LITTLE BACKGROUND ON ME-
My name is Rikki Taylor McDonald. I am 23 years old and have been living with lupus for three years. I was diagnosed in October of 2014 at the age of 20. Being so young and hearing the word “disease” freaked me out. I would even say for the first year or so of my diagnosis, I took it all very lightly. For the most part, I felt okay… Until I didn’t. That’s part of the frustration with this illness! It sneaks up on you! You REALLY have to know your body and watch for signs of a flare up. And, unfortunately, it took me three years to start to understand those signs. I have “triggers”, e.g., stress, lack of sleep, sun exposure, extreme weather (very hot/very cold), poor diet, lack of exercise. Basically, the better I take care of myself – the better I feel. Seems simple enough, right? Wrong. It’s not simple because we cannot always control what is happening in the world to set off those triggers. For instance, this year has been the hardest of my entire life. I live in a town called Gatlinburg, Tennessee. In November of 2016 a wildfire raged through my sweet home town. With it consuming the first home I had ever made my own. Where I had lived for nearly three years. Words barely begin to explain my devastation. It was an experience that changed my life forever. Not only because I lost my beautiful, treehouse home, up in the hills…… but also because losing my house sent me into the biggest lupus flare I have had to date. I became very sick and knew something wasn’t right inside my body. The more days that passed, the worse I felt. Around my birthday in February, I was skiing with my boyfriend and managed to fall and tear my labrum. At the time, I believed I had just pulled a muscle thinking it would get better with time, I dismissed most of the pain. Until I couldn’t anymore. It began to hurt so badly that I couldn’t walk. I was on crutches and barely mobile. In March, we discovered that my long-term prednisone use (to treat my SLE LUPUS) had caused avascular necrosis in my left hip and at the prime age of 23 I would be needing a full hip replacement. After that surgery I was up and walking within FIVE HOURS (which is still incredible to me) followed by a four day hospital stay due to my immune condition. Fast forward to three weeks post-surgery and I’m here on my death bed again. I had what presented itself as a spider bite but actually turned out to be a septic joint. I had developed MRSA in my elbow. Not only that but in the three weeks since my surgery my overall health had drastically declined. My hair (what I had left) had thinned to the point of baldness and my body was absolutely covered in rashes. I had such bad ulcers in my mouth that eating was impossible, chewing anything – even soft foods like mashed potatoes – felt like chewing on a mouthful of glass. Just trying to drink water was like trying to drink acid. We turned around, trying to literally save my life, upped my steroid x4 along with all kinds of other lovely medications added to the already all-too-lengthy list.
Now here I am – 117 days post hip replacement, 100 days post elbow surgery. Probably healthier than I have been since (?) I honestly don’t even know how long it’s been since I felt this way. Not quite healthy BUT on my way there. It’s all about how well you treat yourself every day. I’m eating better, drinking less. I try to get enough sleep every night -SO IMPORTANT. In August, I have one more surgery and then I will be starting a new medication used for treating lupus. So here’s to crossed fingers and 6,000 miles for a cure-
-CHECK OUT LINK ON PROFILE-
All my love, your favorite spoonie-