2 years with Addison’s Disease

living with addison's disease

For everyone, there are certain dates on the calendar that ring with a resonance, whether its happiness, sadness or excitement. Those same dates are undoubtedly absolutely hollow for others. Just another Tuesday. 

Two years ago, I added August 18th, previously just a random collection of 24 hours, to my own personal significance list. That was the day I ended up in the hospital and ultimately, after a week’s stay and many, many tests, ended up diagnosed with Addison’s Disease, a very rare chronic condition that affects the adrenal glands. 

A lot has changed in the two years since leaving the hospital. Much of it for the better. The six months leading up to the ambulance ride were a fog of weird, scary, baffling symptoms that were literally making me a different person. Michelle and I can now laugh about the teapot incident, but in the moment, not so much.

So after two years, here are my hard-earned lessons learned from the past two years for living with Addison’s Disease:

 

Don’t be afraid of the medication

The treatment for Addison’s is a small dose of hydrocortisone, twice a day (I also take a second pill to help with electrolyte balance). Hydrocortisone is a steroid. Given how much you hear about steroids and their side-effects and long-term effect, I was a little freaked out for the first year. 

Turns out, the dosage, I’m taking versus the average NFL lineman, is vastly different. The small replacement dose I take is used up by the body quickly. It’s a replacement dose. It’s gone very quickly. Which brings me to point number two.

 

Learn to listen to your body

This applies for those without chronic diseases, but goes doubly for those with them. The human body is an amazing and complex machine and it’s pretty good at giving off warning signs when it needs something. Like, say, extra medicine.

While I have a baseline morning and evening dose, depending on my daily activities, I might need to take a little more. It’s not an exact science, there’s a little art to it. Don’t go overboard, but if you need it, take it.

You can see how this might be in conflict to how I first approached my medications (see point 1 above!).

See also:   Summer Exercise with Addison’s Disease

 

 

 

You will have “off” days

You remember when I praised the complex machine that is our body. Well, that complexity can sometimes need a bit of a reboot or just a rest day. I might do everything right, take my meds on-time, eat healthy, get enough sleep and avoid too much stress and my body might still drift off course and need a rest day. 

Maybe do to my typical exercise level (pretty high) or maybe just due to the nature of the condition, but my experience has been that Addison’s is a bit cyclical. I’ll have 8-10 weeks of no problems and I’ll feel great then I’ll a week of feeling weird and crappy like the week after my bachelor party. Better to take it easy one day if you’re feeling iffy than recreate the waking nightmare of recovering from drinking binge. 

[Sidenote: getting dehydrated is a danger with Addison’s so just about any hangover is 5x as bad when I do indulge a little too much. Which is pretty infrequently given the penalty now associated with it!]

 

You will be cranky

For me, the magic hours are about 5 – 7. My levels are all low and when cortisol is low, you get persnickety at best, old man irritable at the worst. Not a lot I can do about it except be aware of it and try to be mindful of it. A daily Headspace habit has helped, but I’m still not at my best till that second dose kicks in.

 

You are not sick

Finally, this is one that my endocrine doctor has continued to hammer into me, especially in that first year when I was adjusting to these new circumstances. I am not sick. I have a condition, but I am lucky that the medications can naturally replace what my body no longer makes. I need to be careful but I can still live a full and rewarding life.

 

That’s it. This year, the two year anniversary slipped by and I didn’t notice for three days. I think that’s a good sign.

 

MIKE'S WINDOW