Chapter 1: A Day in the Life of Chronic Illness

The arduous journey of managing a chronic illness can be incredibly challenging. Just yesterday, I found myself once again in the emergency room, an experience I had not anticipated when I embarked on my health journey.

Let me share the events of the past seventy-two hours.

On Friday, I dedicated my day to refinishing furniture and organizing our storage space. It was a delightful change of pace after a week of less physical activity, and I genuinely enjoy this kind of work. The shop was bustling, and I was thrilled to sell a beautifully restored 1920s buffet.

However, around 2 PM, I suddenly felt as though I had hit a wall. It wasn’t just fatigue; it was an overwhelming depletion of energy that I can only describe as running out of gas. It’s a sensation akin to when a doctor asks you to count backward from 100 as you’re drifting under anesthesia — you’re not tired; you’re simply on the brink of losing consciousness.

As everything around me slowed, I struggled to articulate my thoughts or even move, which was frightening for both myself and anyone nearby. Thankfully, I managed to take an additional 10 mg of hydrocortisone, which allowed me to push through the rest of the day, though I didn’t feel quite like my earlier self.

That night, I noticed my blood pressure drop to 101/60. Upon waking Saturday, it had improved slightly to 106/70. The day mirrored Friday’s struggles, but instead of increasing my hydrocortisone dose in the afternoon, I decided to rest and avoid reaching that low point again. This choice was influenced by a recent conversation with my endocrinologist, who advised caution in adjusting my steroid dosage, emphasizing the potential harm to my bones.

By the time evening rolled around, I was utterly exhausted and collapsed into bed by 8 PM. After twelve hours of sleep, I woke up feeling drained. Though I took my usual morning dose of hydrocortisone, breakfast with my daughter was a struggle due to a lack of appetite and that unsettling almost-fainting sensation. I opted for another 10 mg of hydrocortisone, which provided a brief reprieve but soon left me feeling unwell again.

I spent the day at the shop attempting to edit a project for one of my students but ultimately had to call my husband to drive me home as I could no longer manage. When I reached out to my endocrinologist's office, they assured me he would call back shortly. However, it became evident that I needed immediate care, and my husband took me to the ER.

A little insight about my husband: he is typically reluctant to believe anyone needs medical attention. So, when he made a beeline for the hospital without hesitation, I understood the seriousness of my condition.

The good news? The healthcare team at my local hospital was exceptional. Once I had a diagnosis, they sprang into action, administering 100 mg of hydrocortisone via IV, which significantly improved my condition.

Five hours later, my endocrinologist returned my call, just after the ER doctor informed me that I had a UTI and prescribed both IV and oral antibiotics. He also recommended I temporarily increase my hydrocortisone dosage. This incident taught me that waiting for my endocrinologist's input before seeking emergency care is not always the best approach.

When I finally spoke to my endocrinologist, he concurred with the ER's recommendations but advised me to revert to my lower dosage as soon as possible. I had anticipated an overnight stay due to the prescribed hydrocortisone regimen but was reassured I wouldn’t require such a high dosage.

This situation left me grappling with the complexities of managing my condition. I felt optimistic after my previous hospital visit, believing I had a handle on my health with a diagnosis of Addison's disease and nondiabetic reactive hypoglycemia. Yet, reality proved more complicated than I had hoped.

After canceling work calls due to overwhelming fatigue, I found myself in tears, realizing I could no longer function at my usual capacity. Transitioning from a high-energy lifestyle to a state of barely managing daily activities is disheartening.

As I ponder my future treatment, I’m uncertain whether I need a second opinion or to consult another endocrinologist. While I appreciate my current doctor’s thoroughness, I feel he may not fully grasp my unique situation, especially regarding my blood sugar issues.

I have an appointment scheduled with him next week, and I suspect the current hydrocortisone regimen of 10 mg in the morning and 5 mg in the evening may be inadequate. My energy consistently dwindles in the early afternoon, and I believe my low aldosterone levels need addressing as well.

After four ER visits and two hospital stays in recent months, I recognize the need for a more balanced approach to treatment. My body’s cortisol levels fluctuate daily based on stress and activity levels, and I must have the flexibility to adjust my medication accordingly.

As I face upcoming dental work requiring sedation, the need for steroid coverage during the procedure weighs heavily on my mind. My doctor seemed unaware of the implications of adrenal insufficiency in such scenarios, which adds to my anxiety. I plan to ensure my family is prepared with my emergency hydrocortisone shot.

I feel a bit more hopeful today. I've decided to take whatever hydrocortisone I need to manage this week, even if it means doubling my dose temporarily. My daughter will accompany me to my next appointment to help ensure I don’t forget any questions. I also intend to inquire about a referral to the Cleveland Clinic for additional support.

Fingers crossed that my upcoming endocrinology visit results in a solid treatment plan that allows me to regain some control over my life and health.

Shaunta Grimes is a writer and educator, currently residing in Northwestern PA with her husband, three exceptional children, and their pets. She is the author of several novels and the original Ninja Writer.

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