My first cold
I’ve got a cold. It’s not a terrible cold at this point. It started with a minor sore throat and now my nose is stuffed up. It shouldn’t be a big deal, but it is … everything is a big deal since I was diagnosed with Addison’s disease.
Why? You ask. Mostly because Addison’s disease is an asshole.
Pretty much everything that happens to the human body — whether it be good, exciting news, or an injury, or sad news, or too much activity — all affects how a regular human body produces cortisol in the adrenal cortex. Maintaining healthy cortisol levels is incredibly important to being a healthy person.
So those of us with Addison’s disease or other adrenal insufficiency have to try to reproduce cortisol production through oral steroids (and some are now using insulin pumps to inject liquid synthetic cortisol, Solu-Cortef).
There is no blood test, like there is for blood sugar. We just have to predict how much cortisol our body might need before any kind of stress/activity/emotion, etc. or dose ourselves during or after any kind of something that might require more cortisol.
It’s a big guessing game. The kind of guessing game that is terrible for a high-strung individual as myself. I’ve said numerous times that I would take diabetes over this disease any day. I would kick ass as a diabetic. Regular self-testing; inexpensive, plentiful medications; tons of knowledgeable doctors available everywhere … sign me up.
If I don’t have enough oral steroid coursing through my body, I can go into crisis quicker than I’d like to think about. So why don’t we just take more steroid that we think we’ll need in a day? Wouldn’t that be nice?
If I take too much steroid, I can bring on Cushing’s disease which is another jerk disease that is characterized by impressive weight gain resulting in a hump on one’s back. Along with that, Cushing’s folks have a characteristic moon face. I’m not sure if you’ve seen my face, it’s pretty moon-like to begin with.
Basically, too much cortisol or steroid means fat among other things. I’ve been known to gain as much as three pounds in a day when I was on too much steroid. Trying to lose that weight is incredibly difficult and can be very disheartening.
Recently I worked very hard, ate very little and exercised tons to lose five of the 15 pounds I’ve gained since diagnosis. One weekend of too much steroid put it all back on. All those weeks of work, gone.
One of my resolutions this year was to come to terms with my disease. I want to leave the bitterness behind. Most hours of most days, I’m OK with my disease. But then there are those times (especially when I’m looking in the mirror at my gelatinous thighs or standing on the scale) when I long for the BAD (before Addison’s disease) old days and it all seems too overwhelming.
But then I look myself in the eye and remind myself that it could be much worse.
Yes, I’ve gained some weight, but I’m still 15 pounds lighter than I was when I graduated high school. I can do the job I love with relative ease. I can take care of my family and myself. I’m luckier than most.
Yes, I have to deal with this amorphous, jerk of a disease. But then I remember how close I was to dying last June, how I would have left my daughter and husband and mother … and I realize living with a jerk disease is far better than dying from it.