The Fog in My Mind
I love fog. I love its ghostly, gray-white color. I like the way it fills the air with cool dampness, surrounding, softening, and sometimes even obscuring everything around me. I love the different types of fog: mists that form visible, floating droplets of water in the air, and ground-fog, that knee-high stuff of dark forest paths and spooky graveyards. And don’t forget the high, white ocean fog that slips onshore to blur the tops of hills and buildings like low-floating clouds before slowly, silently sinking down to blot out the world. To me, fog is almost inexpressibly beautiful.
But I hatebrain-fog.
What is RA brain fog?
I’m referring, of course, to the mental bumbles, stumbles, and sudden blanks so many of us who cope with rheumatoid disease (arthritis) put up with every day. Depending on which study you look at, brain-fog, or “cognitive dysfunction,” affects up to 71 percent of us.
What does brain fog look like?
I’m sure you’re familiar with it. It’s what makes you put the milk in the cupboard and the salt in the freezer. It can leave you abruptly stranded anywhere, at any time, dazedly wondering what it was you were about to do. At work, brain-fog can completely erase the opening of that important presentation you’re about to give to the CEO and the board, leaving you babbling incoherently. Ever caught yourself gazing at your endless list of email correspondence without a clue as to where to start? Brain-fog.
Brain fog is different from being distracted
As an artist and writer, I’ve always been the easily distractible and forgetful type. My mind is often elsewhere, exploring the landscape of my imagination instead of seeing to the task at hand. It drove my mother crazy when I was a kid. I’ve had to learn to compensate for it as an adult, writing myself lists and setting all my clocks and my wristwatch ahead by 12 minutes, religiously. But as far as I can tell, brain-fog as a symptom of rheumatoid disease has only become a regular part of my life recently.
Great, Just what I need, right?
Brain fog can potentially affect RA treatment adherence
So you can imagine how frustrated I was when I was preparing to give myself my weeklybiologic jab the other night. I’d gathered all the things I’d need to do it properly: a square of gauze, an alcohol wipe, and a teensy sticky bandage just in case I bled a little, all of them still in their sterile packaging. I had the automatic syringe pen with its exact dose of medicine out of the refrigerator, warming up to room temperature on my desk. And for the last 25 minutes, I’d sat with an ice pack on my upper right thigh. It was now quite numb.
Preparing to administer the biologic
I was ready. I bared my frozen thigh and rubbed the injection area with the alcohol to sterilize the skin. When it was dry, I picked up the pen in my right hand. I stretched the skin on my thigh taut with my left hand and positioned the pen in the right place. Then I took a deep breath, blew it out, and pressed the button that would shoot the tiny, exquisitely sharp needle through the skin and into the subcutaneous fat beneath it, where it would release a precise dose of medicine.
It didn’t fire.
What? Oh, no! Was the thing a dud? That just couldn’t be! I took another deep breath, repeated the process, and pressed the button again.
Worried about a faulty syringe
After more than six months of self-injecting biologics, I’d come to pride myself on how deadly calm and laizzes-faire I could be during the whole process. I’d been injecting this particular drug once a week for four weeks, already. Sometimes it stung like liquid fire for several endless seconds, and I’d even steeled myself to that! No biggie!
But now I was rattled. If this was a dud pen, the hugely expensive medicine in it would go to waste. I’d have to get another one out of the fridge and go through the whole drug-warming, thigh-freezing, alcohol swabbing process all over again. I’d be a week ahead on my supply of the medication, and I’d have to arrange for an extra dose, somehow. Did they even do that? And of course, I’d have to regain my calm and resolve, wouldn’t I.
But first, I’d try it again. So I did, to no avail. I tried four more times after that, getting more and more agitated because my thigh was warming and if the bloody injector did finally fire, it was going to hurt like a you-know-what. But it never did.
I’ve always waited until just before bed to do the jab, thinking that it would make it easier if I could just crawl in and go to sleep afterward. You know, disperse the stress, harmlessly. But now, I was exhausted. Wearily, I re-read the paperwork on the drug. It was OK to leave it at room temperature for up to 14 days without spoiling. Fine, I thought. I’ll try it again in the morning. If it still doesn’t work, I’ll use a new pen. I dragged myself to bed.
Finally getting some answers and resolving the issue
After a bracing cup o’joe the next morning, I iced my thigh. I also decided to read the instructions for administering the injection again, even though I’d done it so many times before without incident. And there … oh, jeezly crow, there it was, the reason the pen hadn’t fired.
I hadn’t removed the cap. It’s very small and looks like a ring on the end of the pen. It protects the needle and prevents the mechanism from firing by accident.
Heh. I swabbed, pulled the cap off, positioned the pen, and pressed the button. The needle fired and the auto-injector pushed the drug into my body. I hissed as it burned a little, waited 15 seconds, and removed it. Put the wee sticky bandage on over the pin-sized drop of welling blood. Done for another week.
Was this issue related to brain fog?
Of course, I blame this whole embarrassing incident on the brain-fog caused by my RD. If it hadn’t been for that, surely I’d have remembered to take that cap off, right? It’s very possible. The studies regarding how RD inflammation is responsible for cognitive dysfunction prove that we’re not just imagining it. We’re not just using “brain fog” as an excuse for missing appointments or forgetting where we put the car keys when we got home last night. It really does make it harder to concentrate, focus, and remember things, from the unimportant (didn’t I pick up a can of chili at the store?) to the vital (taking the correct dose of corticosteroids on schedule).
There are a number of scientific reasons for it. My colleague and fellow RD advocate and writer Andrew Lumpe discusses those here. He includes a long list of credible sources, as well, should you want to do more reading on it. My reference list, below, is shorter, but you’re welcome to it.
RD brain-fog may make my existing air-headedness worse, but it’s not like I don’t have any experience dealing with it. And I’m pretty good at learning my lessons so I can avoid repeating the same mistakes. Considering everything I have to remember each day--including taking 12 RD drugs and supplements every morning and night--I think I do pretty well in spite of it. Brain-fog can be challenging and sometimes embarrassing, but I can handle it.
Does RD brain-fog affect you, too? How? I’d love it if you’d share your stories with us in the comments below.
When was your last flare?