I was supposed to be knee-deep in a different project by this time tonight, perhaps even finished with it and looking on to the next big accomplishment. Instead, here I am on Steem, writing a post with profanity in the title because it's the only way I know to adequately express the frustration I feel right now.
Lupus is incurable. I know this. I know I'll never be free of this ball and chain that drags me down time and again. But this time the respite was so long and so liberating that I dared to hope I might actually have a handle on the beast. Tonight, I'm reminded again how very little control I have over anything.
If you've followed my blog recently, you surely saw this post, a happy chronicle of my achievement with lifestyle change and renewed perspective. I'd been symptom-free since Steemfest, and it showed.
A few days ago, I went walking again. Same lake, same time of day, same great attitude. I noticed right away that I was short of breath. By the top of the first hill, my heart rate had exceeded 120 and I had black spots in my vision. Uh-oh. I know these signs all too well. I slowed down and took it easy on myself, tried to not feel terribly depressed, and pushed on until pain started shooting up my left leg straight to my spine. I glanced down, and my fingertips were turning black.
Raynaud's is a syndrome that medical science doesn't fully understand. It's a circulatory issue, brought on by neurological dysfunction. In me, it's the same neurological dysfunction that causes erratic heartbeat, stroke-level blood pressure spikes, and central apnea at night while I sleep. I've been in and out of the hospital with these issues, as they can be quite serious.
Below is a Wiki Commons photo of what Raynaud's can look like. I can have either manifestation--sometimes bloodlessness in one hand and purple skin in the other, depending on elevation. Before being prescribed both beta blockers, calcium channel blockers, and a dopamine reuptake inhibitor, I could hold one hand above my head and the other at my side for a couple minutes, and the elevated one would be cadaver white, while the lowered one would be beet red. The medicines help. But the cold temperatures on the day of my last lake walk were more than my body could handle. By the time I got home I had black fingers. I would have taken a photo, but I own an iPhone with the touch I.D. system, and it didn't recognize my fingerprint signature.
Tcal at English Wikipedia [CC BY-SA 3.0 (https://creativecommons.org/licenses/by-sa/3.0) or GFDL (http://www.gnu.org/copyleft/fdl.html)]
UPDATE: I took this photo of my own hand tonight, 1/17/19, because my phone happened to be unlocked. I'd already held my hand under warm water for a few seconds before I thought to take a pic. This happened when I walked outside to get a bag of dog food out of the car. Exposure time: less than five minutes.
I went to bed and slept two days of my life into history. Work on the Steemhouse novel went undone, kennel chores went undone, and I prayed for a miracle. Please, oh please, just let rest be all I needed.
This morning I resumed the Kundalini yoga kriyas I've doing since a good friend suggested this might be good therapy for me. I knew right away I couldn't sit cross-legged today because my left knee popped audibly as soon as I bent it further than ninety degrees. So I modified the pose and worked with my legs in front of me. Then came another loud pop from my hamstring...and guess what? I'm now limping. This is from simple, gentle stretching movements, nothing rigorous or difficult.
Damn it. Damn it.
I took some ibuprofen and soldiered on with my day. Sure enough, my ankles and feet began to pool blood and swell. This pitting edema is characteristic of congestive heart failure, which my physician ran a battery of tests to make sure I do not have. My heart is fine. This is just one more sign of a lupus flare-up, and it means things are starting to get serious.
By 19:30 tonight, I knew I was in trouble. Big trouble. As in--now I remember the invisible disease that ravages every cell in my body, steals my dreams, and leaves me incapable of living the life I truly want. I looked in the mirror, and my cheeks were dappled with inflammation. I snapped the top photo just a short while ago. That isn't a rosy flush, or even rosacea. It's a malar rash, or butterfly rash, which I first started dealing with in 2010 just before my first positive ANA test.
Over the past decade, I've nearly killed myself to gain remission from this disease. Three different cycles of chemotherapy drugs. Prednisone--a substance that's worse than the disease in many ways. Years of hydroxychloroquine, an anti-malarial drug that just so happens to treat lupus symptoms, the pounds I gained due to steroid therapy--the pounds I've lost in an act of total rebellion--the brittle hair, broken dreams, and dependency on a cane to walk without falling...I could just sit here and weep at the uselessness of it all.
I could do that, yes. But I won't.
I'll work as long as I can before the fatigue sets in. I'll sleep as long as I can tonight. I won't get up early or push myself hard tomorrow. I'll try some new things that have been suggested to me for a healthier life. One step at a time, one day at a time. And then I'll see what the next day brings. Lupus won't kill me. I won't allow it to make me want to kill myself. It's just another form of "dark passenger," a demon I can't shake. I'll never accept it. Never give in to it. I won't concede this fight.
The rest of my life? I'm just getting to the good part. Watch me roar.