My Name is Kimberly and I have Addison’s Disease

Yesterday, someone I’ve known for awhile asked me what my health condition was. I often hear comments like,

“I don’t mean to be nosy, but…”
“Do you mind if I ask you…?”
“I don’t want to be rude…”

I don’t know about other people with health conditions, but I think such questions are great. I certainly don’t mind people asking, and I don’t mind talking about it. I just don’t want to bring it up all the time and bore people with it. So when people ask, I know they genuinely care, and I don’t feel selfish for talking about it.

I have Addison’s Disease. It means my adrenal glands don’t work right. The adrenal glands produce cortisol, an extremely important hormone (they do lots of other things too, but the cortisol is what affects us most so we’ll stick with that) that helps our bodies adapt to change. It helps your body deal with everything from the change in temperature when you walk outside your home, to the change in your emotions when you hit bad traffic, to the change when you’re fighting infection, to the stress of a bad argument or losing a loved one.

From what I understand, a healthy person’s body is adapting cortisol levels every 20 seconds or so. Mine doesn’t do that, and it doesn’t produce the cortisol I need to live well. In fact, since I’ve probably had this for over 20 years, it explains why in high school I couldn’t play sports (I wasn’t just a wimp after all!), why in college I was so exhausted all the time, why in Bangladesh I often got sick, why pregnancy was miserable, and why when I got pneumonia, I almost died.

Now that I’ve been diagnosed, I have to take hydrocortisone, the pill version of cortisol. It is a steroid that I will be dependent on for the rest of my life.

So I should be fine now, right? Not exactly. You see, I also have hypoglycemia (low blood sugar, which means I have to eat every 3 hours, keep a very strict diet, and have to try to keep a good schedule), asthma, scoliosis, and a cyst on my brain (it is squishing the part that makes melatonin, which makes it hard for me to get to sleep, about half nights I’m up till 1 or 2 or 3 or later–which makes that hypoglycemia schedule hard to keep!).

Having 5 conditions gets complicated. And when something flares up, or I get sick, my body doesn’t produce extra cortisol, so I have to take extra hydrocortisone and monitor and regulate it myself. I have to go up 2 to 3 times my regular dose to fight sickness. When I had surgery, I was on stress doses, which meant instead of taking 30mg per day, I was on 300mg per day!

Being up is great, right? Yes and no. It gives my body the umph it needs to fight sickness, but the synthetic stuff comes with side effects. I get ravenously hungry, my blood sugar changes, I retain water, gain weight, and my face gets very poofy (they officially call it moon face–JFK had Addison’s and if you look at his photos later in life, you’ll notice his face got rounder or poofier). The biggest disadvantage is that the longer you’ve been up on your dose, the more your body gets addicted to it and doesn’t want to go down. So you have to go down slowly and suffer drug withdrawals symptoms.

See the swelling around the eyes?

See the swelling around the eyes?

So deciding to go up gets difficult. For example…

Several months ago I had to go up because of an infection. I was up several weeks. I slowly tapered down to 35 mg per day, but then had to stop because my schedule was so full I couldn’t go down any more without getting sick again (it compromises your immune system). So I tried to schedule very little for the 2-3 weeks needed for every 2.5 I needed to go down. I did the first 2.5, but my kids have been coming home with stuffy noses. The past 3 mornings I’ve woken up feeling slight symptoms of getting a cold.

Not a big deal? Yes, a big deal. If I let it go and it becomes a real sickness, I have to go up on hydrocortisone until I get better, then there’s the whole tapering down again thing and I’ve lost the gain I got these past 3 miserable weeks.

But not letting it go means going up now for a day or two and trying to shut the sickness down it starts. I decided to do that. So I’m taking over 70 mg today in the hope that it will give my body the resources needed to get rid of the coming sickness, and then I can go right back to my lower dose tomorrow.

It may work. May not (kind of depends on my kids’ noses too). That’s the gamble. It’s a gamble I live with all the time. I spend a lot of time thinking about my illness because the choices I make all day long affect my different conditions for good or bad. What I eat affects my sugar, my level of activity affects my adrenals and my sugar, the weather affects my asthma, how much I lift affects my scoliosis, and symptoms can be any one of the several conditions–I have to figure out which thing is affecting me and what to do about.

Sometimes I get it right. Sometimes I don’t. I hope today’s decision will turn on to be one of those right ones.

All that to say, I think about my chronic condition all day long. It’s my job to try to be as stable as possible. Not being stable is bad for everybody, and I can’t be who God wants me to be.

So you asking me about it doesn’t bring it up and make me sad. It’s already “up” in my mind anyway, and sometimes it’s a relief to get to talk about it! So, thanks for asking. =)

How about you? What do you struggle with? Have you ever tried to explain it concisely? (This was my concise attempt–I don’t think I succeeded in the concise department!)

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