Category Archives: Adrenal

Brain Fog

Posted on by
7

It was just a passing comment, something I didn’t even think about as I said it.

“I’ll take this shift now, so I’m not driving later in the afternoon.”

We were making a 10-hour drive to Virginia, and we usually trade drivers every few hours on long car rides. Late afternoon, from about 3pm-6pm, is my dead zone, so I wanted to avoid being behind the wheel on monotonous highway stretches if I could.

I am not sleepy then, per se, but I am spacey. I turn pale, I can’t focus or concentrate, I start sentences and don’t remember where I am headed with them, I make dumb mistakes and forget things. I miss turns or get lost. Everything simply drains out of me. Sometimes I start the day like that and it doesn’t go away, sometimes it’s hardly noticeable, but it’s always there.

(And it’s not the exhaustion that motherhood and sleep deprivation cause, though I am the first to admit that the intense sleep deprivation I’ve had the past two years juggling parenting, working, and writing a book has made it much, much worse.)

Brain fog. It’s not so incapacitating that I don’t usually just push through it—really, at that time of day, what other choice is there? I’m in the classroom then, or playing with my daughter, or cooking dinner or going to a playdate or having chest PT. I grab a coffee, drink some water, and wait to get my second wind later in the evening.

It is present enough that it automatically factored into our driving schedule, though, and that meant something.

That passing remark was probably the first direct comment about it I’d made in months, if not years, beyond the simple “yes” I reply when my husband looks at my face and says “You’re off, huh?”

Brain fog. Being “off.” It’s not something I talk about on this space, either. Granted, I really haven’t written about illness of any kind these days, but it just is, it is such a part of everyday life.

I am not even positive how I should attribute it: Partially, it could stem from my adrenal system, which has never been the same since my total adrenal failure several years ago. I’ve never really been the same since that happened. The chronic fatigue I’ve had since I was diagnosed in high school is another obvious culprit. Then there’s the whole breathing thing—when I’m wheezy, congested, or too “tight” it can cause me to be drained and spacey, and when I have an active infection, that obviously gets much worse.

It doesn’t really matter which condition contributes which percentage, since none of them are going anywhere. I do know I wasn’t always like this—I had acute flares with chronic fatigue, of course, but I wasn’t always this dependably and overwhelmingly out of it on a regular basis. It has crept up on me incrementally, and that small conversation about driving really made me step back and think about how long it has been.

So, brain fog. Lots of you have it, lots of conditions and medications can cause it. How does it affect your daily life? What accommodations do you make for it? And any tips beyond guzzling coffee?

Re-Calibrate, Then Restart

Posted on by
6

Re-Calibrate, Then Restart

“Um, you’re going to re-calibrate your definition of ‘feeling sick.’ Starting now,” one of my doctors said to me this week, clearly not impressed with my nonchalance.

The thing is, I wasn’t even being nonchalant. Not purposely, anyway. I was simply conditioned to be oblivious.

I’ve said before how so many aspects of living with chronic illness are universal—no matter what your particular symptoms or conditions are, there are some static themes. The more I write and the more experiences I cull together from other patients, the more firmly I believe this.

But it’s larger than that. So many things about living with chronic illness are universal, period. Whether you’ve been sick since birth or have never had more than a cold your whole life, still emotions and patterns resonate.

Recent events and twists and turns in my health status have made this especially clear.

Example #1, Stuck in a rut-ness: Is it me, or is the tendency to get stuck in a routine or pattern directly proportional to the longer and colder a winter is? Indoor workout routines get dull and less effective, piling on sweaters and layers of pants gets boring and repetitive, getting up in the morning when it’s still dark gets old fast. Yet there’s not much we can do besides hit the “repeat” button and keep on going.

Personally, my winter rut has been one punctuated by infections. While respiratory infections are an occupational hazard of being me, this winter has been beyond the norm. Since October, I haven’t gone more than 10 days without an infection. Bacterial, viral, ones that fester in my lungs and ones that invade my upper respiratory system—it’s definitely been an equal-opportunity season.

So hopefully it’s somewhat understandable that during the past two weeks when I felt exhausted, feverish, and had muscle and joint pain that I attributed to something else (more on that in a minute), it didn’t occur to me to do anything except go to work and keep doing what I needed to be doing? And that it didn’t occur to me that it could be the flu?

“I’m just gotten so used to feeling like I have an infection that I no longer stop to think about it too much,” I told my doctor. “It’s beginning to feel like normal, or at least not that sick.”

Hence the “re-calibration” comment, some in-office nebulizer treatments, and orders to stay in bed for several days.

“But can I teach my last class before spring break first? It’s in an hour,” I said.

She was not amused.

Example #2, Adaptation and Loss: Think about a loss in your life. Was it a bad-break-up? A close friend or family member moving away? Everyone’s experienced what it’s like to have a constant disappear from your life, and the adjustment period it takes to get used to its absence. Sometimes, it isn’t till you stop and realize you’re no longer consciously thinking about it every day that the absence is real.

Allow me to turn this around a little bit. Four years ago when steroid withdrawal caused my adrenals to crash, constant muscle pain and overwhelming fatigue became a part of my life for the next three years. The burning, cramping pain kept me awake at night and when my legs turned to “concrete” mid-step, I could be stranded. I got used to living like that, to never knowing when my body would halt, to walking slowly and trying not to wince.

My recovery was gradual, very slow, but as the months and years went by and my adrenals recovered, I inched closer to the baseline I had before the crash.And before I knew it, I wasn’t even thinking about that kind of pain anymore. I wasn’t planning errands and factoring in the “concrete syndrome.” I was just being me, and I wasn’t even conscious of the change, of the absence of pain anymore.

So it wasn’t until that familiar burning pain, that last step of the staircase that seemed so far away, that slow, sluggish gait came back a couple of weeks ago that I realized how far I was from that place four years ago—and how terrified I was of ever going back to that constant. (The IV infusion of solumedrol every six weeks for years was also something I was loathe to repeat).

The end result? My adrenals are functioning a bit lower than they should be, but they’re chugging along. Since my adrenal depletion is the result of infections this time around, my doctor is confident they will recover on their own, though it may take some time. And while it may take several more days to settle down from the flu, that too will pass.

So as I face down a spring break filled with catch-up work and recuperation, I have some goals. I need to calibrate my idea of what being acutely ill feels like and start fresh—this means not ignoring fevers or assuming I know what’s wrong when I don’t. No more ruts. I also need to squash back my fear of the adrenal situation, because it is mild and temporary and I have the knowledge and resources to do what my body needs.

It might not be spring for several more weeks here in Boston, but I’ve done some mental spring cleaning.

After all, spring is synonymous with renewal, right? And that’s a universal.

Serving Up Adrenal Insufficiency, “ER” Style

Posted on by
2

By now you know I am a collector of rare conditions–sure, people have heard of celiac disease or thyroid disease or various other members of my medical repertoire, but in all my faithful years of watching medical drama–ER, Grey’s Anatomy, etc–I’ve yet to see anyone with PCD or bronchiectasis stroll through the swinging doors of the set. True, I don’t catch each and every show, but I still feel pretty confident that for however varied and creative the ailments shown are, none of them belong to me.

Enter last night’s season finale of “ER.” After steadily declining for several hours in the ER, a hypertensive woman was on the verge of dying when the new chief of staff sauntered into the room and, while the other docs scrambled around, calmly plunged a nameless clear liquid into her IV line. Within seconds, the heart rate monitors stopped their urgent beeping and the woman opened her eyes. Crisis averted.

The doctor refuses to tell the others what the mystery medicine was until the end of the show. As he berates them about their shoddy job taking the woman’s medical history, he mentions the woman had been on steroids to treat a bronchospasm two weeks earlier.

I knew right where he was going with this one.

The hormones suppressed her system, and her adrenals crashed. The character of Dr. Abby Lockhart responded by saying adrenal insuffiency was so rare, as if since it was something they never see they weren’t accountable for not connecting the dots.

Welcome to my world. I was a little bit excited to see my adrenal issues get some TV time–the only other mention I’ve seen of adrenal problems was that awful Honda truck commercial where the guy suffers from adrenalitis, only to be cured by a brand new red truck, obviously.

But I also had a tiny bit of sympathy for the doctors who scrambled to figure out what was wrong with me three long years ago when I showed up unable to walk or even move my lips to speak…and a whole lot of gratitude for my rheumatologist, who figured it out as soon as she saw me.