Monday, January 2, 2017

New Year, New Day

It's the first week of a new year, and time to take stock of The State Of Things; look forward and back. 

The truth is that things are as they always are. Life is good. Full of joys big and small. 

At the same time, things are increasingly different. This time last year, we generally thought that while I was a long way from 'well', my health seemed pretty stable. I was using time and energy to lay groundwork to return to work when I got better. This Crazy Illness(tm) seemed a confusing blip in the road, but I felt I had a pretty good handle on it.

But things changed this summer. The reality is that my symptoms have spread, and I'm getting slower, and basic activities are getting harder. Going up and down stairs, keeping the house clean(ish), writing regular blog posts....

So. Where is 2017 headed? What will life look like this year?

I have a long long list of things I'd love to dig into. A couple data science projects, some arts-and-crafty type stuff, the Etsy store, books, parks, family and friends near and far I'd love to see....

But the world inches smaller, and there's just not room for all of it. 

My best laid plans keep getting derailed; sometimes by illness, but more often by the bureaucracy of illness. I spent the last two months of 2016 completely overwhelmed by taxes, and health insurance. I have an upcoming blog post on all the reasons I was 'not compliant' with medications during the last year. Hint: none of the reasons were because I was lazy or just didn't want to take them.

So I have no big goals or resolutions for the year. The year is too expansive, and I'm not sure what 'achievable' looks like these days.

But I do have some plans for January.

The Blog:

For a short while, at least, I'm taking a hiatus from the ambitious posting schedule. Even the Music Monday posts can be incredibly time consuming. (One reason: when I say that things are more difficult, that includes writing. Picking words, editing... it takes hours just to write a small, simple, focused post. It seems like it should be easy because I'm sitting. Nope. Thinking is work. Just like everything else. I don't have the energy to cook dinner and also write. It's one or the other. Something's gotta give.) 

So for January, I want to write just a few good posts focused on life with this illness -- the challenges with travel, and finding medications, and things like that. Maybe get a little ahead on upcoming posts, and work back up regular posting when I'm able.

Social Media:

At the same time, while there might be less on the blog, I want to share much more on social media.

It is too difficult to share all of what's been happening in passing moments I run into people. And there's a big difference between good and bad days (and if I'm out and running into people... it's definitely a good day).

There were a couple times in December when dear friends stopped to ask if I was doing much better... because I seemed bright and cheerful and.. well, I just seemed better. 

The truth was that those days were, ironically, the days that I'd had exactly zero hours of sleep the night before. I'd been up literally all night long in pain. 

Caffeine and will-power are powerful forces, my friends, and I am proud that my default-setting is 'fun and positivity'! But I need people to know the truth of what's going on. And that includes the in-between, stuck at home, house-is-a-wreck days, too.

So I want to try to share more. Not for sympathy or attention. But just to give light to more of the story.


The number one thing on the agenda for health is to find a local patient advocate. There are many pieces that I keep trying to handle and lately I'm dropping more and more of them. I need help managing appointments, and figuring out the next step, and with even 'small' things like going to pick up medicine.... I need help. Patient Navigators, where are you? 


This is a long story, and one I've been hesitant to talk about because it potentially opens everything up to unasked-for opinions and criticism. But for reasons many and varied, I've been unable to work for two years. And thus, have started the never-ending process of applying for disability. 

Each time I think I've accomplished a step, they hit me with something new that throws all my other plans out the window. I was supposed to have an appointment with my Neurologist this month, but instead will be meeting with a doctor at the request of DDS. This is my life. Another reason I desperately need a patient advocate.


I was recently reminded of how important the heart-building stuff of life is. On paper I could make a good case for dropping everything except the medical stuff. But it would be a big mistake. One of my favorite verses is "The JOY of the Lord is your strength". The good life-stuff is what gives me the energy and encouragement to keep moving forward through the Terrible Bureaucracy Of Illness (tradmark pending).

The big event this month is a father-daughter roadtrip to Kentucky for a basketball game at Rupp! I'm so excited I honestly don't know what to do with myself. Other things like choir and bells and Bible study will happen when I'm able to, but #WildcatWeekend is going to be the awesomest. 

I spent New Year's eve in PJ's, with Netflix. But I spent the first day of 2017 at church.

First Pres was packed to the rafters on New Year's morning, celebrating Epiphany with stories of Light. And Lord of the Rings references, and handing out flashlights for kids-participation, and totally cracking up (seriously - the whole congregation totally cracking up mid-song) at the powerpoint typo that included 'golf' as one of the three great gifts brought by the magi.

I laughed, and prayed, and worshiped with my community of faith. A beautiful way to start the new year.

It's a New Year, and a New Day. 
Go out in JOY and be led forth in peace.
Let's go exploring.

1 comment:

  1. Just discovered your blog through the Chronic Illness Blogger network, and I'm so glad I did. What a beautiful, honest entry. New Years are such important times to take stock of what's important and how we plan on going forward, aren't they? Praying for you as you work into 2017, and looking forward to following more!