There are two quotes that have been my rock recently:
“Nobody said that it would be easy, they just promised it would be worth it.”–Harvey MacKay
“I can do all things through He who gives me strength.”– Philippians 4:13
I haven’t blogged much recently about my journey in navigating UCTD (undifferentiated connective tissue disorder) and fibro. I’ve focused the little blogging time to writing because it’s what makes me happy, what helps me feel whole. And the truth is, I thought this summer would be golden. I wasn’t teaching, I was on a new med, and I would get to write more. I was going to kick this UCTD flare in the rear.
But I didn’t. And I couldn’t.
I got a good month and a half of feeling “well,” where it seemed the medicine was working and where relief was promised. Then I got another month of feeling “well enough” before the tiredness and migraines and pain started again. On top of that, I was getting itchy. Barely two weeks into the new semester, I was about to claw my skin off from the itching, I was exhausted, struggling to work through the days and stay on task. My weekends left me recuperating enough to tackle the next work week. When I finally got a hold of my doctor, I was told it was the Arava, the new medicine, which sometimes causes itching. Thankfully, though, it’s just an allergic reaction and not my liver shutting down. I stopped taking it, but the thing with Arava is it’s a slow-working drug, so you don’t start seeing the results until about 4-6 weeks after you start taking it and when you stop, it can take a couple of weeks for it to get out of your system completely.
I’ve been off Arava for two weeks, and this past one I’ve been feeling myself spiraling back down towards that dark place that exists lodged in the middle of a flare-up. My joints, which I realize now had only mildly and inconsistently ached over the summer, are sore and tender. My hip, shoulders and fingers, especially, are hurting. The morning stiffness in my feet, ankles, and legs is back–and this is something I’d seen an improvement in. I’m exhausted, struggling to keep myself awake driving back home. And the itching is still driving me crazy.
And for a few moments this week, I wanted to tuck myself in a corner and cry. Because I thought it was getting better. Because I finally felt in control of this thing that is an autoimmune disorder and I didn’t want to go back. Because I hate drugs and their side effects that help one thing but screw up another one. Because in my mind, this isn’t how I’m supposed to feel at 33-almost-34. Because this isn’t how things were supposed to work out.
Because I feel broken and discouraged and I hate it.
But I also hate feeling down and staying down. I refuse to let this disease have the upper hand. I have my family, my writing, and my friends, who support me and help me. I remind myself flares are cyclical. The brief moments of feeling better were great, and they will be back. Somehow, at some point. I find strength in my faith and in my family and in my writing.
Then yesterday, I came across this blog post by author Sarah M. Eden and I was inspired and awed and moved by her journey through RA. I felt as if she were speaking to me directly when she said, “I can’t change this, but neither can I simply plop down on the roadside and weep for the rest of my life.” It’s something I know, something I refuse to do, but it’s also something that, when in the midst of a flare, is hard to remember.
“Sometimes the road we are asked to walk in life is harder than we anticipated. In fact, I think it often is. And, yet, it is our road and our journey. There are times when we can stop and see the beauty around us. But there are moments when the simple act of taking a single step requires every ounce of strength and endurance and energy we have,” she writes, and I couldn’t help thinking, YES, this is so true. I know exactly what she means by this. There are times when it takes every effort just to get out of bed.
Her post reminded me of the quote above (“Nobody said it would be easy, they just promised it would be worth it), and indirectly, to writing and getting published. It also reminded me that this life, however broken and imperfect, is mine to make the most of it. And make the most I will.
Alexandra Alessandri 
Thanks for the encouragement. Phillipians 4:13 is my life verse. I’m facing the reality of my diagnosis received three weeks ago. I am also a teacher and elementary coordinator. I am going to have to cut back. The stress is really making me so much worse. People always say, “But you look so good.” They have no idea how sick I feel EVERY morning. I’m fighting, but I am so tired.
Hi Laura. I’m so sorry for your diagnosis. I wish these diseases would just go away, or that there would be some magic cure that could make us feel better. I don’t think anyone who hasn’t gone through it (or something similar) will be able to comprehend what it’s like. The level of exhaustion and pain that comes every day and night.
You’re doing the right thing in cutting back. One of the things I’ve learned is that I have to listen to my body. I’ve also learned to say no, even if it means upsetting others. Rest is probably one of the best non-narcotic options to get better. Today’s been one of those days when I’ve spent all day in bed, in part because I’m sick, but mostly because my body aches. Every joint hurts. Even a soft touch is painful. I’ve also learned that it’s a cycle, and it WILL get better. There WILL be some moments of ease in between the rough days. Sometimes that remission will be only a few days, but sometimes it’ll be a few months. And hopefully, we can manage it enough so that we have a few years of feeling well.
If you ever want to talk or vent, you can email me. Good luck, and I hope you get some good days soon.