RA and the OMGs
This is hard.
You’ve started a new biologic. A “miracle drug,” as it’s sometimes referred to. It’s been about six weeks since you started it—not long enough for most biologics to show their effects, beneficial or otherwise, but in some patients, this one has “worked” this early.
For you, not so much. In fact, at this moment, you’re in real pain. Your hands have serious headaches—no! —migraines. Your right ankle stabs and screeches as if you sprained it—youdidn’t—with each step you take. A moment ago, as you sat down on the loo—such a normal, everyday movement—your left hip gave you a vicious jab deep down in your groin. And now, as you sit watching evening television, that hip is grumbling softly at you in a low monotone that could turn into a screech at any moment.
Or not. Because that’s how the rheuma-dragon rolls.
Be calm, you tell yourself. None of this means that the new biologic isn’t working, or that it won’t work, for that matter. It doesn’t mean that the other drugs you take for your rheumatoid disease aren’t working, either. If you weren’t taking them—and the new one, too—maybe you’d feel a whole lot worse than you do right now. And man, you don’t want that.
But … well. You don’t want to feel this way, either. You’re in pain. Your rheumatologist tells you the best way to treat that pain is to treat the underlying disease that’s causing it. Well, duh. That’s what you’re doing.
But you’re just so freaking tired of it. You want to be strong and keep on “fighting” for yourself and perhaps for others (your family? Friends? Co-workers or colleagues? Teammates?) because, well, what choice do you have, really? You can’t just quit.
New hope met with familiar disappointment
For many of us who cope with RD, this is one of those really, really tough moments: the ones where, for a while, all you can feel is bleak. You start each new treatment with a fresh surge of hope, dredged up from some deep, seemingly inexhaustible supply. Maybe, you think, this will be the treatment that’ll finally help you fight that malicious old dragon back into his cave. Maybe this will be the one that’ll help you brick up the entrance to the cave so he can’t get out—maybe forever! Maybe this is the “miracle” drug that will give you your old life back.
But for now, it just isn’t working. Your hands, shoulder, ankle and maybe even your hip all say so, and you have no choice but to listen.
So now what? How do you cope with the disappointment again? How do you avoid the darkness that looms in your future? And that’s just the physical darkness—the pain, the fatigue, the fevers, the co-morbidities that tend to crop up over time with RD. What about that other darkness, the one that settles down over your soul like a dense fog at the realization that there seems to be no effective treatment for you? No relief?
I was there, recently.
Now, I think of myself as an optimist. I’m always looking for the sunny side, for the little kernel of good deep down in the bad. My glass of silly clichés is half-full, not half-empty. But there are times when all my inner glad-handling just doesn’t shake off the sads or the fears or the OMG-what-ifs.
How to cope with disappointment
And that’s when I force myself to listen to all that good advice there is out there about how to deal with The Sads. Instead of staying indoors, I make myself go outside. I make myself go breathe some fresh air. Maybe I grab Mom and we go to a favorite store for a little shopping therapy, the kind where actually buying anything isn’t the point. It’s just a way to get outside of myself for a while, a trek with nothing more in mind than to ooh-and-ahhh at the pretty things. Then it’s lunch at a cheerful, busy restaurant where there are people talking, laughing, and smiling, because that stuff is contagious.
The other day, she had an early doctor’s appointment, so afterward we went to breakfast at an inexpensive diner-type restaurant. The woman who waited on us was absolutely the smilingest, nicest, laughing-est and most pleasant person I’ve encountered in well, years. Hers was a hard job. She’s not rolling in dough. And yet her attitude and her manner were simply stellar. That woman made my day—maybe even my month. The year’s not over yet, but she may have made that for me, too. I can still see her sparkling eyes and huge smile in my mind’s eye, and she makes me want to pass that kindness on.
Feeling better with nutritious foods
Another thing I try when The Hopelessness hits? I take a look at my diet. Like far too many of my fellow Americans, I tend to eat way too much junk food. I absolutely love crunchy, salty, cheesy snacks. I prefer sandwiches to salads. And since my hands, wrists, ankles, and feet are usually giving me the what-for, spending time in the kitchen preparing and cooking nutritious meals often gets put aside for frozen dinners or foods that I can prepare quickly from boxes and cans.
Yep, it’s a good excuse, but it is still an excuse. I can do better. I know it because I have. Cooking a chicken breast on my small, indoor grill takes almost no time and cleans up easily. I can get brown rice in microwaveable packets. Salads come in bags these days, and there’s almost nothing simpler than steaming veggies. You can even buy them in steaming bags for the microwave, now. I’ve learned how to use seasonings to make simple foods taste sublime. It’s only a matter of doing it.
And when I’m eating right—staying away from processed foods, making veggies the main part of my meals, sticking to whole grains and lean meats and healthy fats—I really do feel better, both physically and mentally. They’re tightly intertwined, after all.
Finally, I look at my sleep patterns. Pain can sure keep me from sleeping. Worry about pain and about my future cause insomnia. If I drink too much coffee, or eat too late in the evening, I probably won’t sleep well. So, I do what I can to change those things when The Miseries come. Sometimes I can’t do much about my pain, but I can control how I react to it. Instead of worrying about it, I can choose to simply feel it, doing all I can to stay in the here and now in my mind, rather than way out in a future that hasn’t even happened yet—and which I have no control over, anyway. I’ll forego that last cup of coffee after dinner and have a cup of decaffeinated green tea, instead. I’ll eat my evening meal as early as I can—and refuse to snack later. I know from experience that these things can help me sleep better when it’s time to turn in.
Asking for help
Finally, we can ask for help when life with RD just gets us down. We can talk to our primary care physicians or our rheumatologists. We can ask for different or better medications, or referrals to other specialists who might be able to help. We can ask for help from a mental health specialist, too. Sometimes, we simply need a non-judgmental, detached someone to talk to, someone whose actual job is to listen and try to help.
My new “miracle” drug still isn’t working, but my outlook is better right now. Some of that is just because I’m the kind of person who doesn’t stay down long. But a lot of it is because I took steps to shake myself out of it, too. I didn’t like it much, and I tried to talk myself out of it. But hey—it worked.
What do you do to help yourself cope when life gets tough? I’d love to hear from you in comments below.
After the past 2+ years, how do you feel about telehealth appointments to manage your RA?