It wasn’t all bad, the realities of 2016…..

As I look back at 2016, I’m reminded of how painful this year has been for myself, my family and the world at large. But, a few kind-of amazing things stick out too. 

Of the not so great, we lost many celebrities that meant a lot to all of us. The shocking deaths of David Bowie, Prince and, most recently, Carrie Fisher and Debbie Reynolds. Personally, my family and friends suffered the losses of some extraordinary people. Some who’d lived into their eighties, some just approaching their mid-lives and one who’d barely begun to know what life could truly be. All sting individually.

As for my health, I’ve spent the last eighteen years managing my lupus and thirteen dealing with RSD. It’s been just loads of fun for myself and my family, as you can imagine. But I’ve learned a lot about myself in that time. I remember going to my mom’s apartment after the rheumatologist diagnosed me. I was devastated and thought that lupus was a death sentence. I sat at the head of the dining room table and said, with probably way more drama than was required, “I have lupus.” Of course I started crying. When I looked up, my mom said, “Ok, so what do we do about it?” There was no wallowing in that news. Much like the way my husband had reacted, my family was ready to help me fight. They’d help me land on my feet to do it. But their reaction spurred me into reality. I could fight. And I have. 

My RSD diagnosis was no different, in terms of their response anyway. My husband hasn’t ever flinched. He’s only ever advocated for me, running interference with doctors and nurses. He’s protected me, standing strong when I couldn’t. And there were years when I literally couldn’t. I have been truly blessed. 

Last January, when the pump broke, I thought I’d reached another critically negative crossroad. Losing that pump changed my life for the first time in a very long time.  And it’s been in mostly positive ways! When you’re managing day-to-day with a chronic illness – if you’re lucky – nothing terribly dramatic happens. You’re not blindsided by trouble, if you’re fortunate. That major blindside stopped me in a way I didn’t expect. I had choices, real choices, for the first time in years. I could steer the ship. Did I want the pump replaced? Could I live without morphine? 

After the withdrawal tapered off, and mostly without medicinal intervention, I started to worry about when the other shoe would drop. I felt mostly ok. Not at all like I’d felt when the pump was first implanted. At that time, I was in agony. Using up all of the blocks, injections and other treatments that could help in the least invasive way. It was pump time, back then. Now? Now was a whole other ballgame. So I waited. Setting milestones for myself. I opted not to replace it. 

As the time passed, I started having more energy. I began to lose weight. In fact, since “pumpgate,” I’ve lost about 18 pounds! That’s major for me. I’m approaching weight goals I didn’t think were possible. 

The pump explant surgery in July didn’t go as I’d hoped. The complications were problematic. After a couple of months, I started to realize that my confidence and drive were shaken. I’d just reached my stride, going to classes and working part-time. Suddenly, I felt like all of my wins were in my imagination. They weren’t, obviously. But it took a conversation with my teenaged daughter to wake me up. She wasn’t having my pity party. I decided to start living again. If there were obstacles, I’d either meet them or step back. At least until I could make a plan to overcome them. 

My personal setbacks were more painful because people that I care about dealt with struggles I had no answer for. Things I couldn’t “fix,” as I might have in the past. But, over time, even those roadblocks became less cumbersome. We navigated things together and continually find light where so much darkness had pushed in. 

We’ve all had wins this year. The losses are more obvious to us because they hurt and degrade us. It’s tougher to see the good things when so much goes wrong. When you live with a chronic illness, you’re far more used to the negative. The good news may arrive infrequently, but it does come. If possible, try to seek out what goes well in your life. Big and little things. It’s a skill that requires practice, believe me. I’m still working on it.

So, we sprinted to 2017, eager to close the door to last year. But, once the relief of January 1st had settled down, I realized I wouldn’t mind having a window to look back at 2016. Every now and then. It’s good to reflect, on the positive and negative. That’s how we learn, adapt and survive. We’re warriors, that’s what we do. 

Wishing you a great 2017.  

Peace and painlessness, 



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