Being Diagnosed with Addison’s Disease

 

I had every intention of writing this post last week but I received an important phone call literally minutes after I published the last post.

It was a follow-up phone call from my endocrinologist. Since she had gone on vacation when I had gotten my latest round of bloodwork done, I had to wait until she returned to get my results. They were good. My pituitary gland is working well. My hypothyroidism is under control with my current medication dose. 

“Your cortisol levels are… okay…” she said before I asked the question I’ve been wondering.

“So, is my condition secondary adrenal insufficiency or…?”

The whole point of this round of bloodwork was to determine that very question. She is my new endo and she didn’t have enough information about my condition. Apparently, my former endo had left some gaps so she wanted to cover it all… including whether my condition was indeed secondary adrenal insufficiency as was diagnosed or if it was a misdiagnosis. 

“It looks like it’s primary…” she said, before explaining why. 

My stomach sank. It was what I was dreading. My former endo had given me so much hope of a full recovery one day. If it was secondary, there was a chance — no matter how slim — that it wasn’t permanent. A diagnosis of primary meant one thing: a permanent condition of a rare disease that would keep my immune system in a compromised state for the rest of my life. 

I have Addison’s disease, that’s what primary adrenal insufficiency is called. That means that my adrenal glands don’t produce enough cortisol or hormones to keep my body functioning properly. It affects everything from blood pressure to minerals (especially potassium and sodium). If not careful, I can have an adrenal crisis, which can be fatal. It nearly was two summers ago, before my diagnoses. I have to take extra doses of hydrocortisone when I have surgeries, wound care (which I found out too late), and other stressors. If I have the flu, a cold, food poisoning, or a fever, I have to double up on my doses to help prevent a crisis. I’m at a higher risk for infections and other things, so I have to be very careful around others. It’s going to mean a lot of other changes as well… which I will get to in a minute.

I’m so grateful to my oblate sister (sr. Elisabeth) for introducing me to St. Elisabeth of the Trinity. Before we became oblates, she had mentioned this lovely Carmelite saint but I wasn’t sure why she had said I reminded her of St. Elisabeth. I had gotten comparisons to St. Therese because the sufferings she went through but I didn’t know anything about St. Elisabeth. That’s when I did my research and found out she had Addison’s disease as well. The only difference is that I’m blessed to live at a time when modern medicine can help me while St. Elisabeth didn’t. In fact, I think she died from this disease and had apparently multiple adrenal crises. So, I have a new friend in Heaven who knows what it is to have this condition.

The diagnoses couldn’t have come at a better time. Even before the call, I was already planning on doing St. Michael’s Lent (from the solemnity of the Assumption to the feast of St. Michael Archangel). I had planned on cutting out Twitter (which was the biggest source of my stress) and greatly limit both Instagram, other social media platform, and noise in general. I was going to go forward with my plans to purge all entertainment (novels, movies, shows, etc) that was bringing unrest into my heart; things that took over my thoughts while I was trying to concentrate on hearing His voice in prayer. Because my body doesn’t respond well to stress (since it doesn’t produce cortisol), this seemed like a confirmation to what I’ve been feeling called to do — eliminate all that causes stress.

Now, it’s impossible to eliminate all stress. Even hermits deal with it (or so I’m assuming). But I *can* eliminate stress that I voluntarily subject myself to. Getting on social media isn’t mandatory or necessary for my survival. Literature and other forms of entertainment that disturb my peace aren’t crucial for my wellbeing. On the contrary, they cause more harm than good, especially to my soul if the material is especially problematic. I have a chance to limit that outside noise. And that’s what I had planned for St. Michael’s Lent. I also have other things I’m giving up — comfort things — but those are more of a voluntary form of penance.

So, that’s how I’ve started St. Michael’s lent. That and some unkind words that I’m going to leave at the foot of the Cross and not dwell on because it’s not worth it.

And that’s what I’m going to try to remember to do — leave everything that threatens my inner peace at the foot of the Cross.

Fear of common illnesses that become a lot more high risk for me? Leaving it at the foot of the Cross.

Fear of how people will react to these and other changes I feel called to do? Foot of the Cross.

All my worries, anxieties, disappointments, etc? Foot of the Cross.

This diagnosis is also a beautiful reminder of how God is in charge and how I simply have to trust in HIm. My endo was surprised that my body did as well as I did after a full month of (every other day) wound care. I was supposed to double up on doses every time I went but I didn’t know. I also had my labs done the day after the most excruciating wound care apps ointment and was still in pain and yet my labs were the best (though still low normal) they’ve been since my initial diagnosis in October 2020. I credit that to the prayers of all — the saints and everyone who has prayed for me — and God’s mercy. He made sure I was able to endure all of that stress and not have an adrenal crisis. God is good!

What do things look like from now on? I can’t have visitors unless we all head outside and maintain distance. I have to wear a mask when I go out, even if I’m outside. If I’m somewhere with large crowds, I need to get as much distance as I can from them… which means I’ll have to always be with someone who will be able to let me know since I won’t be able to see. I need to prioritize rest and healthier eating as I’ve fallen off the wagon with the latter (goodbye, delicious Lorna Doone cookies…). I will need to increase my sodium intake, a tip I learned from a follower on Twitter who also has Addison’s. I suffer from low blood pressure and now I know why. Also, I now understand why I’m so tired all the time and why my endo has stressed the importance of sleep since I met her.

And, most importantly, a greater reliance on God. Instead of getting anxious and wanting to control everything as a result of that anxiety, I’m going to keep resigning myself to God’s will. If something difficult and unpleasant happens, I’m going to take it as a lesson that I need to learn. I’m very much “big feelings that run deep” (I am a melancholic-phlegmatic after all) so it’ll mean surrendering my natural reactions and thank God for them all — good and bad — while learning to offer it all up as well as I can. It’s not going to be easy but we weren’t placed on this earth for an easy life.

I’ve always said that I’ve felt closed to God while suffering from physical maladies so I guess that, in a way, my prayers of breaking down whatever was keeping me from Him have been answered.

I’m not afraid of the diagnosis. Disappointed, yes. I had plans… but His plans are greater than mine and I know He will bring so much good and beauty from this diagnosis.

Lord, I place myself entirely into Your hands (again). Your will, not mine.

Anyway, that’s it for now. I want to turn off WiFi and screens to rest my eyes. Ever since I took the last round of antibiotics (which I had to stop after two days), I’ve had some unusual eyesight issues (yes, on top of the bilateral optic nerve atrophy) that I haven’t recovered from and I need to close my eyes more than usual.

I hope you’re all having a lovely week thus far.

I hope to blog again soon but I’m scheduled for a surgical procedure tomorrow so I don’t know when I’ll be able to write again as it’ll be near my rib cage and I’m sure I’ll have to have limited movement on my right side for at least a couple of days. Until then, I’ll keep praying for everyone who has asked for them.

As always, thanks for reading and God bless! 😊