Insomnia Ramblings

Again...

I've been doing better, overall, with sleep lately. But tonight I woke up a little after 2, hives got stirred up again (been battling deep, raw, oozy, nasty ones for about 3 weeks, initially triggered by my PICC line dressing), took more Benadryl. Here I am, more than an hour later, desperately wanting to be back to sleep, but finally giving up and climbing out of bed for a few minutes to see if staring at a computer screen might induce the sleep-bringing numbing of my mind. My legs are alternatively numb and prickling with pain.

Today's infusion day again. They are pretty much blurring together now, but I think I have just six left now, either including today or at least after today. Not going to bother checking the calendar at the moment. We seem to have a pretty good system going - pretreat with Benadryl 50, half a bag of normal saline to make sure I'm well hydrated, the one actual bed in the infusion center so I don't fatigue myself from the effort of having to stay semi-upright in a recliner, turn on the oxygen tank, start the IVIG at an agonizingly slow rate of 5, then monitor for the next 4-6 hours to see how I do. When my chest starts getting tight or my throat starts to burn, the second dose of Benadryl is called for and the oxygen gets turned up a bit higher.

We coax the IG drip up 2-3 points at a time, hoping to get to an infusion rate of somewhere between 12-18 before the day is over. The higher we can go, the sooner I can go home - but it's a delicate ballance, because if we go to fast, I face harder reactions as the benadryl wears off, like the day we nearly called 911 when I got home and couldn't breath. Somewhere along the line, we change my dressing and pray that the domino effect of fresh hive break outs won't drive me too far over the edge. Once the beeper tells us that I'm finished for another week, the second half of my saline bag pumps on, bringing refreshment and the ability to walk out of the infusion room on my own power. (OK, let's be honest here and admit I can never do anything on my "own power," only through God's life-breathing strength, but I think you get the point - I'm thankful to be able to make it to the elevator without a wheelchair by this point.) I come home tired and clawing at my PICC line hives (and other random outbreaks), glug more benadryl, attempt some semblance of dinner with my family, then crawl in bed for the night.

I'm thankful that before all this awaits me for yet another day, that first I will be able to sit at Jesus' feet this morning, be refreshed and challenged by the insights into His Word shared by our pastor, and lay all the burden down through praise and worship. I'm not doing such a great job at daily digging into my Bible on my own through this season, so I'm utterly hungry for "spoon-feeding" from others while I'm too overwhlemed to do much "meat cutting" on my own. Thank you, Lord, for my family including an amazing husbnad, kids, parents and extended family, a lovingly supportive church, and especially for Your Spirit to walk with me each step, through places and experiences I otherwise would go alone.