What do you wear when you are going through topical steroid withdrawal (TSW)? Anything you darn well please! Well, dark fabrics should be avoided. Lighter color shirts help make the tons of shedding flakes “less obvious” (yeah, right, who could miss the little blizzard on your shoulders?) and cotton fabrics, for us, did not hold onto the flakes as much as synthetic material during “shake-the-flakes-off” time. There must be some type of electromagnetic attraction between polyester and dead skin because even the Hoover couldn’t suck it off. Figuring out the right clothes to meet the needs of painful, sensitive skin and “scratched up” knees and elbows took a little more thought.
Even though we stopped using topical steroids on Brian in October 2013, he was still able to go to school in “fifth grade boy fashion”–shorts and long socks in sub-40 degree weather– because the full effects of topical steroid withdrawal had not yet started. The stinging started mid-November, and the worst combination of the visible symptoms–swelling, oozing, crusting, flaking, shedding, red sleeves, and burning redness head to toe–started on the eve of Thanksgiving Day. He was cold all the time because of his messed up temperature regulating mechanism (part of topical steroid withdrawal), and his skin hurt when pants and sleeves or other material rubbed up against it. Thankfully, it was the colder months and long johns were in season, so I bought 5 pairs of long john tops and pants for him. He wore them under his regular long sleeve clothes and used them as pajamas. The body-hugging fit was more comfortable to him and prevented the flaking, sensitive skin from snagging on moving material. Also, they were cotton, so the flakes shook off pretty easily. The two layers served him well for warmth and skin pain management through early April of this year.
As his temperature regulation improved and the days started getting warmer this year, we weaned him off of wearing the long johns shirts and gave him “sun sleeves” to wear with short sleeve shirts. Why use sun sleeves? His arms were still pretty sensitive, scratched up, and itchy, and at least this attire was cooler than 2 long sleeve shirts. The sun sleeves provided a comfortable snugness to his arms. Then, a few weeks ago, he gave up the long johns pants. Having thinner jogging pants material touching his skin did not send him into a frenzy! This was progress! However, despite the increasing temperatures this May, he continued to wear the jogging pants. He did not want to wear shorts because he was just not comfortable yet having his skin and scratchy knees exposed to the air.
Well, today was another milestone in his TSW clothing evolution. It was cool and drizzly outside, and what did Brian choose to wear to school? SHORTS! Oh happy day! 🙂
No, I did not pick out his color scheme, and yes, my Christmas decorations are STILL up!
“Praise the LORD, O my soul, and forget not all his benefits–who forgives all your sins and heals all your diseases.” Psalm 103:2-3