The journey continues…. Chapter 2….

It’s been a while since I’ve been able to write. Honestly, I’m just tired. So, so tired.

Can anyone relate –  ???

Before I get too far in to today’s writing, which will be short, let’s catch up on the saga of the last month.  After the mini-flare in October, I had a followup in February to assess the mini-treatments we’d done and see how things were going. To say I got unexpected news would be quite the understatement. Let’s just say my head spun around my shoulders at least 2 or 3 times.

Everything was back.  It was all back.

The shock of this news was almost unbearable. RA. IBD. UC. Addisons. Dysautonomia. I’d find out a week later, Sjogrens too. And that doesn’t even count the heart issues. The RA meds would have to be re-started immediately. Yes, even the metho. I hate that medication.

As the doctor dictated to his scribe, I sort of drifted up to the top of the room, looking down and listening from a distance to the instructions that were about to fall on my head. The pile of emotional wreckage left behind by broken plans and dreams overwhelmed my very soul. It was almost too much. I had to fight to stay focused. “Please, God – no… just, no….”  And the tears fell. I think I even whimpered a bit.

My day suddenly went from an 8:00 doctor’s appointment that would make me a few minutes late to staff meeting to a full day of doctor visits and lab tests, and it would be 6:00 in the evening before I finally got to work. One of the doctors took me out of work for a month. I was shocked. While I’d been told before to take some time off, I’d never had to give in to this and was able to push through and persevere. Though I didn’t do as he recommended at the time, this decision was now proving not to be the best course and certainly not my friend. Two weeks later, when the Sjogrens test came back positive, I reached out for his help, and he said, ever so gently, “It’s time.” And he took me out. In a protective, I-want-to-help-you-beat-this way, he said it’s time, you’ve got to rest. I felt my mind relax a bit. Decompress. Exhale.

Submission can be a wonderful thing.

And so I’m out of work for two months. And though recommended time and again, other than a day here or a few days there, I’ve never been out for a long period like this. It’s surreal and I’m not sure what to make of it.

While I shed a few tears in the exam room, it was in the privacy of my car in the parking lot where the floodgates opened. Why is it that we don’t feel we can ugly cry in front of other people ? My heart was broken. My body hurt all over. How would I prepare my family for this – again ???  What in the world would I tell my employer?  It wasn’t what I’d asked for from God. My begging and pleading and promises and work for the Kingdom all ended in a big fat “No.” It truly hurt my feelings. I don’t know any other way to describe it. Sitting in my car, wet-eyed and snot-faced, the God of the universe had answered my prayer. In His own way. For my own good, though that seemed a distant promise in the moment. The news of the day changed everything. Literally, a game changer. Hopes. Dreams. Heck, nevermind hopes and dreams, what about my commitments – ??? I’d made commitments to other people, and – my employer…. how in the world would I pull this off ? What would I tell them ??

A million questions ran through my mind, each marked “priority” and competing to be answered first. My brain literally turned to mush just trying to process it all. Stale mush. Like… old mashed potatoes mush, sitting cold and hard on the kitchen counter.

So….here we are, 10 days later.

During this time (10 days so far), I’ve heard from countless friends and colleagues who also struggle with auto-immune diseases. Either themselves or someone in their family. There’s just nothing quite like the invisible illnesses, the auto-immunes. These dear people have asked for help, encouragement, just a word from someone who’s been there. Somebody somewhere who gets what they’re going through. I have re-visited the idea of a blog for chronic’s again and again. And suddenly, it’s so very real.

Years ago, a dear mentor friend gave me some of the best advice I’ve ever been given. He said, “just start.” And so, I’m going to. And I’ll make mistakes and need more ugly-cry moments, but hopefully you’ll be forgiving and stay with me on the journey. Sharing my story to help just one person, somewhere out there, who needs a friend, someone who understands the “invisible’s” and knows what you’re going through. Someone who will ugly cry with you. A safe place to combine hope with the sadness, joy with the disappointments, and keep life on track. God’s track.

So thanks for joining me on Chapter 2 of this journey. Hang on for the ride, life’s about to get real interesting….