Discouraged, sad

I spotted him in church this morning. I know he has Dup because his wife had told me a few weeks ago. He’s older than me and has been in the Dup trenches for at least 10 years. He told me that he had Xiaflex in years past. The pain was unbearable and, despite deadening meds to numb his hand, it sent him out of his chair. Two fingers on one hand are bent to his palm. I think his other hand is equally affected. Yes, they hurt him. Sometimes at night the pain wakes him up. Seeing his crippled hands brought tears to my eyes. For him.

For me. 

For my hands’ unknown future. The likely possibilities scare me.

I can barely look at my hands. In the past few months, my right hand has been trying to catch up with my left. Yes, they are worsening. They burn and ache (thankfully low key) constantly now. They’re tighter. Yes, I can still fully open and extend my hands. A blessing. I know. And I thank God for that. 

Next month, I’ll see oncologist Dr. Shalin Shah in person (not virtually like I did at the start of this journey) in Sugarland. Can I have additional radiation on my left hand? Should I even have it on my right if it didn’t help my left? 

Even now, sitting in my chair, typing on my iPad, Dup’s reminding me that he’s there. Some slight burning in the webbing between my left thumb and forefinger. A little ache like a bruise in the top left corner of my right palm. 

Sometimes I just want to whine. I just need to whine. I try to keep my fears to myself. But when I need to let some out, my husband always patiently listens. I know he wishes he could help. He wishes he could take it away from me. 

And then I berate myself for wanting to whine. So many others have far worse diseases and conditions. C’mon, Sheryl, quit complaining! Stop being a baby, I tell myself. After all, I can still function next to normally. My hands still look physically okay. People can’t tell about my Dup unless I tell them. 

I’ll keep praying and asking God to slow the progression of the Dup in my hands. And when I do, I always ask that He also slow the progression of other conditions that friends and family have, including most especially my hurting friend at church.