My latest appointment with my rheumatologist was fairly uneventful, which I suppose is actually a good thing. The blood work results from last week were encouraging as they showed my inflammation markers have settled back down to normal. I am still taking prednisone, but at least we know it’s doing its job. My blood was drawn after decreasing the dose from 40 mg to 30mg so at least I’m holding my own there. He gave me the greenlight to continue tapering so I’ve been at 25 mg this past week and will continue decreasing gradually in 5 mg increments. Fortunately the pain has not returned which I am so thankful for, but the truth is my heart and chest still don’t feel quite right. I explained to my doctor how there are times where it feels irritated or as if the rhythm isn’t quite right.  Occasionally I feel slight pressure which obviously freaks me out, but he wasn’t overly concerned. He attributed it to the residual effects of pericarditis which my heart and chest are still recovering from. In a few weeks I will follow up with my cardiologist for another EKG followed by a stress test and more bloodwork.

His working diagnosis is viral pericarditis and he is hopeful it will eventually resolve itself. He explained that his hesitancy to diagnose lupus is due to some markers being absent. However, he did acknowledge that viruses can trigger lupus as well as reactions that mimic lupus-like symptoms so confirming a diagnosis isn’t as easy or as straightforward as we’d all like. There is no definitive test that will prove if it’s viral; we just have to connect all the dots, and when we do that I’m pretty confident in the viral pericarditis diagnosis.

Doctor’s orders are to slowly decrease the prednisone, continue taking colchicine, be patient and take it slowly. To be perfectly honest I hate that. I’m impatient and just want to get back to normal already. I need to get off the steroids as soon as possible because the side effects really suck lately. I gained weight, my face looks swollen, I have trouble sleeping, I often feel wired and my memory and ability to think clearly are shot. 

Consistently getting outside and walking/jogging has been instrumental in maintaining a positive mindset. The fresh air and being out in nature while moving my body for an extended period of time definitely helps to keep the irritability and negative thoughts in check. Not being able to run as many miles as I’d like — and certainly not as fast as I’d like — is frustrating, but I’ve come to terms with the fact that it’s going to be a slow process. Simply being out there moving at all is something I shouldn’t take for granted so that has been my focus this week. 

I’m extremely grateful for the progress I’ve made these past few weeks which meant I was able to be home for Christmas with my family. I’m more appreciative of the seemingly small things that I often take for granted, such as the ability and privilege to host family and friends at my house while enjoying their company. I’m grateful for all the messages from friends checking in on me and asking how they can help, especially during this busy time of year. I’m also grateful that I have the ability to research ways that I can improve my health because being able to apply that knowledge and incorporate what I’m learning into my daily life is very empowering. That’s been crucial in defeating the victim mentality that often creeps in when things aren’t going exactly as I hoped.

So for the next three weeks I will embrace where I am, take it one moment at a time and celebrate the small stuff. My hope for all of us is that we can make time to reflect on all we have to be grateful for and to focus on the positives instead of the negativity that seems to dominate the world right now. Let’s invest our energy in spreading light, knowing that light will always overcome the darkness. All we need is a tiny spark. Just think of what we could overcome if we all chose to fuel the sparks that would help shed light on what’s really important while suffocating the dark things that steal our joy and ability to love each other. I wish you all a very Merry Christmas and Happy New Year.

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Ecclesiastes 2:13 –  I saw that wisdom is better than folly, just as light is better than darkness.

John 1:5 – The light shines in the darkness, and the darkness has not overcome it.