Day 140

I liked day number 140. Day 140 was Friday, February 17th. Fridays are always nice and the 17th was sunny and 75 degrees… can’t beat that. Day 140 was also the day Nicki and I received an official diagnosis for the health issues impacting my brain.

Have you read Nicki’s post, My husband, the zebra? If you haven’t yet, now would be a good time.

Waiting for a diagnosis is tough. It’s especially difficult if it’s a long wait; filled with doctor appointments where you get to hear things like, “We can rule out _______, but we still don’t have an answer.” I was able to hear that statement several times. I left each of those meetings with happiness, but after a few days, the stress of the unknown would continue to grow.

As much as I tried, I was never really able to push the stress of the unknown out of my mind. And I don’t just mean that the stressful thoughts were in my mind for parts of each day. The thoughts were always there. They never left. No matter what I was doing, the stress of the unknown was always there.

Within moments of waking up each day, it was on my mind. While I worked on fixing many office computers, it was in the back of my mind. When updating websites, it was in the back of my mind. When writing short amounts of code to solve website issues, it was in the back of my mind. When cleaning around the house, it usually moved directly to the top of my mind.

No matter what I did, it was always on my mind until I was able to fall asleep.

At first, I just tried to let it be there. I didn’t try to push it away, I just wanted to let the thought happen, then move on. That didn’t work. They never moved on. Then I tried to totally ignore it and push it out of my mind. That didn’t work at all – not even for a second. It somehow became even more noticeable. It was like trying to ignore a young child who refused a much-needed nap. No matter what I did, I was being followed around by these thoughts and the more I tried to ignore it, the louder it became.

The only option left was to accept it. So we became friends.

We’d hang out all day, every day. It did most of the talking. I’ll admit we were just cohabitating, we weren’t really friends. We were just stuck in the same situation. The thoughts were still annoying, but we were in it together.

One morning, we were walking home from mass and it was talking like crazy. I tried to change the subject, so I focused on what a nice day it was. It was a beautiful day with a clear blue sky and a surprisingly warm southern breeze. So I decided to ask it, how could it be so focused on the stress of the unknown on such a beautiful day.

For the first time in months… there was silence.

It was silent. It had no response. I felt like I had won, I had beaten the stress of the unknown; but the truth is, I didn’t.

I didn’t have a diagnosis. I didn’t know what was causing the issues with my brain. I didn’t know if there would be treatments available. I didn’t know how long it would take before I started to feel like myself again. I didn’t know if I would ever feel like myself again. All of the unknown was still unknown, and it was all still stressful.

But I knew the sun was shining and it was beautiful.

I always expected the fear/stress of the unknown would shrink as I learned more about what was going on. It didn’t.

I now have a diagnosis, I even have treatment planned. I “know” more — but the truth is, I still don’t know what the future holds. None of us truly do. We can plan and predict tomorrow, but we can’t know for sure what is going to happen.

For me, it’s better to focus on the few things I know.

  • I know I have an amazing wife.
  • I know I have a loving family.
  • I know I have many great friends, even if I don’t get to see them often.
  • I know I am incredibly lucky.
  • I know it’s a beautiful day (even though it’s raining).
  • I know the rough days make the good days even stronger.

We’ve all heard that we don’t really know what will happen in our lives. That’s become painfully obvious to me.

My new/current outlook on life: Always work for the future, but happiness comes from appreciating today.

So what is the diagnosis I’ve mentioned, but have yet to say…

Primary Angiitis of the Central Nervous System (PACNS).

“Primary angiitis of the CNS was first described in the mid–1950s. By 1986, only 46 cases had been reported in the English–language medical literature. Since 1975, an increasing number of cases have been described, and over 500 cases were reported through 2007. Primary angiitis of the CNS affects patients of all ages but peaks around 50 years of age and is most common in males. A retrospective analysis of 101 cases revealed that the average annual incidence of PACNS is 2.4 cases per 1 million person–years.”

More info on PACNS can be found at Cleveland Clinic’s Center for Continuing Education. Personally, I do not recommend researching / reading the information anywhere else. The article linked above was written in July of 2015 and for rare diseases, the date it was written really makes a difference.

In terms of my treatment it’s difficult to properly mention all of it, but here’s the start… I’m currently taking strong amounts of steroids each day. These will continue at the high dose for a while, and then the daily amount of steroids will be reduced in steps – this will happen over the next 6 months. Next week, I’ll be starting my first dose of chemotherapy (PACNS is not cancer, but it is treated similarly). Chemotherapy will also be used for 6 months. At that point, we will see how everything is going and evaluate other upcoming treatment plans based upon how everything is going.

Always work for the future, but happiness comes from appreciating today.

Photo: Nicki and I in Clearwater Beach, Florida. Taken with my GoPro the day after she agreed to marry me. I still can’t believe she said yes, and I’m incredibly thankful she did.