I hate roller coasters! I am very happy with my two feet on the ground and have no desire to feel my insides shoved up into my throat, my eyes bulge out of their sockets, and my cheeks flapping in the breeze, hanging upside down going 60+ MPH. I much prefer holding the bags and hanging out near the dipping dots.
Topical Steroid Withdrawal (TSW) is a rocky roller coaster ride through mostly hell with occasional loops into the sunshine. You are the rider, and you’re stuck holding the bags. With TSW, you have periods of flare–redness, burning, itching, oozing, crusting, insomnia– and, if you’re lucky, periods of calm–>less severe symptoms. These phases alternate back and forth without rhyme or reason with varying intensity and duration and no consistent patterns. A calm, great-skin period can lull you into thinking you are one of the rare few who has healed miraculously quickly, only to find yourself in a full blown flare a few days later. This goes on 24 hours a day for many months, and sometimes even years.
Your emotions, if tied to the appearance and itch of your skin, will be up and down and all around, too. When will the flare end? I’m healing faster than most…Oh, no, another flare! I’m finally healed! Not another flare….It’s over, yay! no more oozing….Will this misery ever end? As soon as I put those special potions on, I’ll be healed, yay….Will I ever get my life back? Can’t wait for this to be over so I can start living….and on and on and on.
After I posted those pictures (4/3/14) of nice, almost normal looking skin, Brian’s skin started having a little flare–not glaring full-blown redness, crusting, weeping, etc.–but some red patches here and there, tiny red spots dotting his skin in no specific pattern, increased number of abrasions and cuts compared to previous weeks. Then his itching got worse, and his sleep was still screwy, and all of a sudden that wonderful feeling of almost being done turned to despair as we realized he still had a long way to go to complete healing from TSW. BUMMER! BUMMER! BUMMER!!! Get me off this roller coaster! Now, Brian loves roller coasters, but he’d like this ride to end soon, too.
These pictures of Brian’s several-week mini-flare were taken yesterday.
Granted, his skin doesn’t look that bad, but it could be better. And we know it could be way worse, so I’m thankful for what we have now.
The nature of the withdrawal process is flares and calms that are reflected in the skin’s appearance. Instead of basing my happiness and his state of healing totally on what his skin looks like, I try to gauge “getting better” in other ways as well. I look at what Brian is able to do now compared to what he did at the start of TSW. We try to enable him to live in this moment as much as possible instead of wishing the time away in misery. After all, if he is going to be itchy, painful, and miserable anyway, he may as well do it while doing as much as he’s able to do with the people he likes and loves.
His skin and itch may not reflect it, but we know Brian is healing because:
1) He can now fall asleep before 11:30pm.
2) He can now get 2-3 hours straight sleep, more often.
3) He can wake up more often around 9am or 10am instead of 12pm and 1pm to get ready for the day.
4) He has been able to attend school at least 18 of 22 days in April for at least half days. (He’s been out of school since Thanksgiving 2013.)
5) He is able to do more and be awake longer with fewer incidents of itchfests and fatigue meltdowns.
6) Though he’s not yet 100% back in top form, he is able to play a high level of baseball.
7) After school, he is able to run to play with a friend across the street or ride his bike to another friend’s house a block away instead of crashing out on the couch in a scratching, sobbing heap.
The ride is not over yet, but, yes, Brian is healing. We just have to look beyond the skin and beyond the itch.
“Blessed is the man who trusts in the LORD, whose confidence is in him.” Jeremiah 17:7