At 14.5 months into topical steroid withdrawal (TSW,) my husband and I thought Brian’s itchfests and restless nights were over, but we were wrong. We are now beginning to dread, once again, when the sun goes down and night comes because with the night comes more scratching and tossing and turning and sleepless nights for all of us.
We’re back to using ice packs for itching, hot packs for warmth, and the new addition to our scratching arsenal: the therabrush for scratching “gently.” Theoretically all this works, but in the morning the results are in: abraded legs and red bumps; a few open cuts and scratches; dry, flaky skin; and at least 1 teaspoon of shed skin–yes, GROSS! and, yes, I did measure just to see. At least it’s not a tablespoonful like in the early days of TSW. My arms should be getting tone from the daily sheet shaking, and we almost wiped out another washing machine due to the numerous loads of daily laundry we’ve had to do in the past 14 months.
Nonetheless, the healing continues, and we just try to focus on the good stuff that’s going on, too, and be thankful for how far Brian’s come. From a year ago, homebound with fatigue; loss of hair; swelling; thin, oozing, macerated skin; burning, stinging skin; and “red sleeves” to….
being able to attend school full-time, run cross country for the first time, play baseball, basketball, and have fun and run around outdoors like a regular 6th grader. Though still itchy and flaky, his skin is stronger than last year, and the burning, stinging, and red sleeves are gone. Yes, beyond the itch, healing is happening, even though it’s like watching the grass grow!
Another good thing about TSW–and technology–is that we have met some truly wonderful people, from all over the US and the world, whom we never would have met, had it not been for this life-stopping journey we share. During his Christmas break from school, Brian has been playing X Box with another fellow named Oliver who is going through month 8 of topical steroid withdrawal. Oliver lives in the UK. They are about the same age and get along really well.
They sure do miss their other TSW buddy, Faiz. Peace, comfort, and healing to you and your family, my friend.
Don’t let TSW get you down! Play X-Box with a friend, and….
make banana splits!