Insufficient..

A few weeks ago, I shared that some concerning bloodwork had prompted two of my specialists to reach out almost immediately.

If you’ve spent as much time navigating the medical world as I have, you know that doctors reaching out before you have a chance to call them is rarely a sign that you’ve won a fabulous prize.

Well, I finally have an answer.

I think.

Because apparently, even my diagnoses come with a disclaimer.

My latest addition to my ever-expanding medical résumé is secondary adrenal insufficiency, an endocrine disorder that affects the body’s ability to produce cortisol, a hormone essential for regulating blood pressure, metabolism, stress, energy levels, and, as I’ve recently discovered, the ability to function like an actual human being.

Normally, the pituitary gland in the brain produces a hormone called ACTH, which sends a message to the adrenal glands telling them to produce cortisol. Think of the pituitary gland as the boss and the adrenal glands as the employees. When the boss sends instructions, the employees get to work.

In secondary adrenal insufficiency, that communication breaks down. The pituitary gland doesn’t produce enough ACTH, so the adrenal glands don’t receive the signal to make the cortisol your body needs.

There are several reasons this can happen, but in my case, the likely culprit is something I’ve relied on for years to manage my autoimmune arthritis: steroids.

Oh, the irony.

The very medication that has allowed me to function may now be contributing to my inability to function.

Here’s where things get interesting.

Corticosteroids, such as methylprednisolone, act like cortisol in the body. When you take them, your brain senses that there’s already enough cortisol-like activity and tells the pituitary gland to cut back on ACTH production. With less ACTH being produced, the adrenal glands slow down their own cortisol production.

Normally, this system adjusts when you stop taking steroids. But with repeated or prolonged steroid use, the pituitary gland and adrenal glands can become suppressed and may not immediately resume their normal activity.

In other words, my pituitary gland has gotten so accustomed to the steroids doing its job that it apparently decided to take an extended vacation. Unfortunately, it neglected to inform the rest of my body.

And now that the steroids have been stopped, my adrenal glands may not be receiving enough instructions to produce the cortisol I need to function.

So the medication that helped me survive years of autoimmune flares may have temporarily disrupted the very system my body depends on to keep me going.

If that isn’t a cruel twist of medical irony, I don’t know what is.

When my endocrinologist reviewed my medical history, she noticed something I hadn’t fully appreciated. On average, I’ve been taking a Medrol Dosepak approximately every eight weeks.

Every. Eight. Weeks.

I knew I needed steroids frequently. I just hadn’t realized how frequently until someone laid out the timeline.

And here’s the heartbreaking part: I needed every one of those prescriptions.

Without steroids, I wouldn’t have been able to continue working as long as I did. I wouldn’t have been able to care for my mother during her final months in hospice. I wouldn’t have been able to push through the pain and inflammation that have dictated so much of my life.

Steroids gave me the ability to show up when showing up mattered most.

And now, it appears, my body may be presenting me with the bill.

Before undergoing testing, I had to remain off steroids for three weeks.

Those three weeks were miserable.

For nearly two of them, I barely left my couch. Taking a shower became an Olympic event, except instead of receiving a gold medal, I received a three-hour nap.

Laundry? Absolutely not.

Cooking? Let’s not get carried away.

Basic household responsibilities? Apparently, those are now considered extreme sports.

My pets continued to be fed, loved, and appropriately spoiled because, regardless of how badly I feel, their standards of service remain exceptionally high.

My own nutritional needs, however, became considerably less impressive.

My appetite practically disappeared. I frequently felt nauseated, and the thought of preparing an actual meal was exhausting. Thank goodness for protein shakes and greens gummies, although I suspect my body would appreciate something resembling a balanced dinner.

What made this particularly confusing was that my autoimmune arthritis wasn’t necessarily flaring.

I wasn’t experiencing the familiar inflammatory pain that usually sends me searching for relief.

I was simply exhausted.

Not tired. Not sleepy. Not the kind of fatigue that improves after a good night’s rest.

I’m talking about the kind of exhaustion that makes brushing your teeth feel ambitious.

Some days, I slept 16 hours. Other days, I couldn’t concentrate long enough to write a coherent paragraph. My brain fog was so thick that I’m fairly certain my remaining functioning brain cells were wandering around with flashlights trying to locate one another.

And for someone who loves writing, that loss of mental clarity is particularly cruel.

I have stories I want to tell. Books I want to finish. A life I want to live.

Instead, I was becoming intimately acquainted with every cushion on my sofa.

This isn’t living. It’s existing. And there is an enormous difference between the two.

Of course, because I have absolutely no self-control when it comes to medical portals, I saw my test results before speaking with my endocrinologist.

I stalk those websites like they’re holding the winning Powerball numbers.

Initially, I thought some of my results looked reassuring. Apparently, interpreting endocrine bloodwork requires considerably more nuance than deciding whether a number is highlighted in red.

Who knew?

My endocrinologist explained that my results suggested my pituitary-adrenal system wasn’t producing the hormonal response my body needed.

And suddenly, the overwhelming fatigue, weakness, brain fog, nausea, and inability to function began to make sense.

There may actually be a physiological explanation for why I’ve spent weeks feeling like someone unplugged me and misplaced the charger.

We’re still determining exactly what’s happening and whether my adrenal function can recover. For now, I’m taking medication to replace the cortisol my body may not be producing adequately, and we’re monitoring how I respond.

And here’s a little bit of good news.

After just two doses, I made it through today without needing a nap.

Now, before anyone starts planning a parade, I didn’t exactly conquer Mount Everest.

I didn’t clean the house, tackle the laundry, or suddenly become a productive member of society.

But I stayed awake.

I felt a little more human.

And I didn’t spend the entire day feeling like my couch and I had entered into a legally binding domestic partnership.

It’s a small victory, but after the past several weeks, I’ll take it.

There is still more testing ahead. My endocrinologist also wants to investigate a possible parathyroid issue, but we’ve decided to address the adrenal insufficiency first.

Apparently, my endocrine system has decided to hold a departmental rebellion, and we’re handling the mutineers one at a time.

You would think that after more than four decades of chronic illness, I’d be better at receiving another diagnosis.

You would think I could hear the name of a new condition, nod knowingly, add it to my medical résumé, and move on.

But that’s not how it works.

Every new diagnosis takes something out of me.

Every time I think I’ve adjusted to my circumstances, every time I believe I’ve found a manageable rhythm, something else happens.

Another specialist. Another test. Another medication. Another reminder that my body seems determined to rewrite the rules just when I think I’ve learned how to play the game.

I tried very hard to avoid Dr. Google until after my testing.

Naturally, that restraint didn’t last long.

When I finally searched for secondary adrenal insufficiency, the first description I encountered included the words:

“A potentially life-threatening condition.”

Well.

That was enough internet for one day.

I slammed my laptop shut.

I understand that adrenal insufficiency is treatable. I understand that people can manage this condition and live full lives. I also understand that untreated adrenal insufficiency can be dangerous, particularly during illness or significant physical stress.

Knowing those things intellectually, however, doesn’t make receiving another diagnosis any easier emotionally.

And this is where the sadness creeps in.

I retired this summer, not because I was ready to stop working, but because my health made the decision for me.

I had imagined retirement differently.

I pictured having the time and energy to write, travel, explore new places, enjoy my pets, and rediscover the parts of myself that had been pushed aside during decades of working and managing chronic illness.

I wanted to wake up and ask myself, What would I like to do today?

Instead, I often wake up wondering, What will my body allow me to do today?

There is grief in that.

Real grief.

I grieve the career I loved and had to leave behind. I grieve the independence I once took for granted. I grieve the plans I’ve made that remain on hold because I simply don’t have the physical stamina to pursue them.

And I grieve the retirement I worked so hard to reach, only to discover that having the time to enjoy life doesn’t necessarily mean having the health to do so.

I’ve already experienced so much loss this year, particularly losing my mother. I had hoped this next chapter would bring some peace, healing, and perhaps even a little adventure.

Instead, it seems my body has enrolled me in an advanced course in medical terminology, with absolutely no opportunity to withdraw.

And I’m tired.

Not just physically.

I’m tired of being resilient. Tired of adapting. Tired of being told how strong I am when, quite frankly, I’d rather just be healthy.

Sometimes I don’t want another lesson in perseverance.

Sometimes I want an ordinary Tuesday.

One where I wake up, drink my coffee, walk my dogs, write for a few hours, make dinner, and go to bed without having to calculate how much energy each activity will cost me.

Is that really too much to ask?

Still, I know this isn’t the end of the world.

There is treatment. There is a plan. And there is reason to hope that I may begin feeling better.

Today offered a tiny glimpse of that possibility.

So I’ll take my medication. I’ll follow up with my specialists. I’ll undergo the additional testing. I’ll keep advocating for myself, even on the days when I’d much rather hide under a blanket and pretend my medical chart doesn’t exist.

But I’m also going to allow myself to be sad.

I’m not going to pretend that another diagnosis is no big deal or that a positive attitude magically erases the disappointment.

And maybe, when someone asks how I’m doing, I’ll try to answer a little more truthfully instead of automatically smiling and saying, “I’m fine.”

Because sometimes I’m not fine.

Sometimes I’m scared, frustrated, angry, and heartbroken.

And sometimes I’m hopeful.

Those feelings can exist together.

For now, I’m holding on to the fact that today was a little better than yesterday.

I didn’t need a nap. My brain felt a little clearer. And for a few hours, I caught a glimpse of the person I’ve been missing.

I don’t know exactly what retirement will look like for me anymore. I’m still trying to reconcile the life I imagined with the one I’m living.

But I’m not ready to give up on the possibility that there are good days, meaningful experiences, and adventures still waiting for me.

I don’t need my life to be perfect. I just want to feel well enough to participate in it.

And if my pituitary gland could kindly return from its extended vacation, that would be a lovely place to start.