Saturday, May 21, 2011

Nappy Time No More? An Update on the Adrenal Story...

Last Friday, I made it through an entire day without taking a nap.

This may sound random to many (most?) of you, but, to me, it's deeply significant.  As my three-year-old would say, trust me.

Here's the story:

Exactly one year ago I caught a cold.  That cold turned into a serious illness involving intense chronic fatigue that only worsened over time.

Seven months after my cold, my doctor got to the bottom of the larger issue: she diagnosed me with adrenal insufficiency, or too-low levels of cortisol in my body.

Eight months after I had contracted the cold, I began treating the adrenal insufficiency with daily hormone replacement therapy, under the care of my endocrinologist, of course.  In other words, I gave my body the hormones it's supposed to produce on its own.  If I didn't, I would eventually die from an adrenal crisis or total adrenal failure, so I've made it a point to take my pills. 

Things immediately got better.  Along with vitamin supplementation, a change in my diet (all gluten-free, all the time), lifestyle changes (if you cause me stress, you're gone), and a strict eating/sleeping routine, the pills seemed to be making a difference.  I had more energy and the frequency of my passing-out episodes had decreased.

However, I also knew that I had a long way to go.  If I deviated from my schedule even by ten minutes I would crash physically - sometimes to the point that my husband would have to leave work to come home and cover the kids because I simply couldn't move my body.  No skipping meals for me - every part of this amazing machine God designed had to be in precise working order.  If I became thirsty or hungry my body would think it was under stress and try to produce extra cortisol.  Uh-oh, my body would say to itself, you can't produce extra cortisol.  You're in a danger zone.  You need to shut down and protect vital life functions only so you'll survive.  What happened next?  I would pass out stone-cold, completely unable to respond.

So, I learned to follow my routine.  I ate five, good meals a day at precisely the same times every day.  I took my medicine and supplements (yes, I'm part of the handful club) at exactly the same time, twice a day, every day.  I carried a stainless steel (no hormone-execreting plastics here...we can't risk upsetting the balance of my endocrine system) water bottle with me at all times, downing the clear liquid in an effort to stay hydrated.  And I slept.  Asleep by 10 p.m., up at 6:40 a.m., like clockwork.  If I didn't/couldn't make that happen, I paid for it with increased fainting episodes the next day.

[How did I handle passing out while taking care of two kids, you might ask?  The crazy thing is, since the end of my last pregnancy, I have never passed out when I'm alone with the kids.  (Some doctors would hear this and think that it provided evidence that I was, clearly, making all of this up and just producing symptoms in order to get attention.  I was referred to a psychiatrist more than once.  I have been inexplicably passing out since December 2007.)  I, for one, attribute that fact to God's amazing, all-covering grace and provision.]

Last week I had to call my endocrinologist's office to talk with them about refilling my hydrocort prescription.  I hadn't planned on calling them.  I hadn't planned on asking if the quality of my life could improve.  The words just came out of my mouth before I even knew what I was doing.

I explained that I still can't make it through a day without napping.  I described for the nurse how I fall into this deep, intense sleep that takes me a solid thirty minutes to come out of, and how this happens every day at the exact same time (2:30-4:30 in the afternoon...for those of you who know anything about cortisol production in the body, this will make sense...starting between 3 & 5 your body will descrease its cortisol output in order to prepare your body to sleep later that night).  I also told her that if I deviate from my strict routine, even slightly, that I'll have another fainting episode.

Then, I asked her, expecting a negative/hopeless response: is it supposed to be like this?  In other words, is this as good as it will get?  I mean, it's fine for now, while both of my kids nap when I do, but what happens when my oldest drops his nap?  How will I make it through a day?

She sounded genuinely surprised and said, "um, no....let me speak with the doctor and get back to you."  Now, as you may have guessed, I'm not new to doctors.  And I'm certainly not new to doctors blowing me off.  From the sound of her voice, it sounded like she was concerned and would get me an answer soon, but I wasn't betting on it.

One hour later she phoned back with a new plan from my doctor.  He wanted to raise my daily dose to the max level and see how I tolerate it.

All I can say is, thank God for this doctor and his entire staff.  It's amazing how loved someone can feel when people do their best to take care of you.

I implemented the new regimen the next day.  The result?  NO NAP!  I laid myself down, as usual, at 2:30 and expected to pass out.  The minutes ticked by and I didn't fall asleep.  I actually felt somewhat normal.  I counted backwards and realized that was the first time I hadn't napped since last November.

It's been two days and still no nap.  I'm definitely tired, but I'm also really excited.  I can see a light at the end of the tunnel.  Maybe my life will be different someday in the near future.  Maybe I will have a relatively normal level of energy, enabling me to participate more in my life and the lives of those around me.  Maybe I'll be able to throw the ball with my son, rather than just watch while his daddy plays catch.  Maybe I'll be able to do laundry while my kids nap, instead of forcing them to suffer through it during playtime.  I'm starting to think it's not just a maybe, that it's a real, attainable yes.

YEA!  That's cause to celebrate!

1 comment:

  1. That is definitely reason to celebrate. I am so happy for you. :-)