It feels like it has been forever since I did a life update that is not explicitly grad school related. As most everyone knows now, I have Rheumatoid Arthritis. At times throughout my life, it has been debilitating and, quite frankly, a nuisance. For a while, the flares settled down, and while I was still in a good amount of pain and discomfort, it was tolerable and something I figured I would just have to deal and live with for the rest of my life. It was November last year when the mother of all flares hit me, and of course, it came at the least convenient time ever. I had exams and projects, oh, and I was about to fly to Boston in two weeks, so I was on major crunch time to do whatever it took to hold the flare at bay. Insert panic at this point. I was in survival mode. At age 22, I never thought I would have to master the art of spacing out ibuprofen so I could sit through a class to feel slightly more comfortable and have to pick a portion of the day that it would be a better time to suffer in pain. Before I would walk out the door for class, it was like prepping for war and bandaging me up in hopes of relief. This puzzle of timing and relief became even more challenging while traveling for school, but somehow, I managed. I paid for pushing myself, but the miserable feeling was masked by the need to make it through; ‘fake it ‘til you make it’ became a way of life. Between that time and now, it took begging and pleading with my doctor to allow me to see an adult RA specialist. Years had gone by without seeing a specialist, and it was way overdue. With great reluctance, my doctor finally gave into writing me a referral, and this is where a new journey began. Within a couple of days, I heard from a new doctor and made an appointment. The phone conversation was relatively short, but I could already tell I was going to like this doctor. The day of my appointment came, and I am not typically excited or willing to see a doctor, but desperation had set in and was pretty much willing to do anything to get relief. I do not know about anyone else but having a pragmatically acceptable conversation with a doctor has not been my typical experiences. I was shocked that he sat there with me for forty-five minutes genuinely listening, asking me questions, letting me ask questions, and creating a plan of care collaboratively. This was new territory for me, but his first impression was refreshing. Still, in my new state of optimistic bliss, I eagerly went for x-rays and bloodwork (and if you know me well, it usually takes a good bribe for me to get bloodwork done). For the first time in a long time, I felt hopeful that the current state of my RA was not going to be my forever. Fast forward three months: I have been taking a new RA medicine. It is the first I have taken that did not wreak havoc on my body with whatever side effects they had. This medicine is one of the oldest of its kind and was first discovered to treat RA back in World War I where it was originally meant as an anti-malaria drug. Come to find out for the soldiers who suffered from RA found their symptoms were lessened while taking it, thus spurring testing to prove their claims, and the rest is history. I had come to terms with the idea that I would always feel crappy to some degree. This past year, I especially felt the severity of my stiffness and fatigue increase, but for the first time in practically a decade, I feel more like I did before my RA emerged. I cannot remember the last time I felt like this, and it is a welcomed feeling. The first time I noticed this big change was being able to sit on the floor with my client for an hour without going completely numb from the waist down or having to hoist myself up with a chair like a crutch. On top of that, I did not feel the aftermath of it either. While I still pop and crack a fair amount, it is nothing like it used to be, and my personal sound effects no longer preceded saying ‘good morning.’ I actually feel like my age for once. And that feels good. Three months have flown by partly because I feel that much better, but the battle of pushing through to do the things I want to do is no longer a draining leach of my energy. For the longest time, people would look at me and blatantly say I did not look like I felt well, but now I hear the opposite, which is encouraging. Like with any journey, there are ups and downs with triumphs and bumps along the way. Right now, life with RA is better than it has been, and I hope this upward trend lasts. I know there will still come times when it flares, but those are the moments when I will appreciate all of the good days compared to the few rough ones along the way. Nothing can be as bad as months and years going by feeling like there is no end to the pain, so with this new plan of care and doctor who listens, my hope of RA having less of a negative impact has been restored. Because when the amount of time I have had RA has exceeded the years I lived without it, perspectives change and wondering how bad it can get becomes the mindset. Now, it does not seem so bad. Stay Curious, Kayla ©Inquisitive Perspectives 2019
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