Don’t Let TSW Keep You Down!

Brian is still in the “little” flare (increased at-rest itching, some shedding) that began at the end of July/beginning of August, but he’s not letting it keep him down.

This little 6th grader ran in his first cross country meet on Wednesday 9/25/14!  Actually, it was his very first real race EVER. After 2.2 miles running/racing alongside a good friend, Brian expressed a little disappointment in his finishing time. I had to remind him that he didn’t do too badly, considering he had just started running (for sport) 2 months ago–voluntarily, at that. He just shrugged it off, mumbled something to the effect of, “That’s no excuse,” and ran off to goof off with his teammates.

Heck, I’m just so thankful he can run at all—and sweat without having an incapacitating itchfest– and laugh and play and be a moody 6th grader who can attend school and learn and have fun….and did I mention be a moody 6th grader?

No matter what stage of  Topical Steroid Withdrawal  (TSW) you are in, hang in there. TSW takes a long time, but it doesn’t last forever. You CAN get through this!

Keep the FAITH.
Stay STRONG.
Be PATIENT.
PERSEVERE.

Go the distance, and you will not be disappointed.

“I can do all things through Christ who strengthens me.” Philippians 4:13

“I have set the LORD always before me. Because he is at my right hand, I will not be shaken. Therefore, my heart is glad and my tongue rejoices; my body will rest secure.”  Psalm 16:8-9

11-Month Flare But Still Back in Action

On the ITSAN forum, veterans of Topical Steroid Withdrawal or Red Skin Syndrome speak of the “11-month flare.”  Well, Brian’s skin has been flaring slightly  since the end of July, early August. The flare for him started as a slight increase in itching, and now it has grown to include more red, raised rashy areas on his neck and trunk, along with increased flaking of the neck area and more itching  (ss 3/5) during inactive times. Thankfully, the itching is still not as continuous and intensely incapacitating as it was several months ago.

Despite this seeming setback, Brian continues to improve in strength, endurance, and function. He is attending school full time, being able to get up by 7am and catch the bus to school. He has also taken up cross country running, continues with travel baseball, and plans to do basketball in the winter.

After coming in second in last weekend’s tournament, Brian’s team won the “Back 2 School Bash” this weekend. They are off to a good start of Fall baseball. Beyond the skin and itch, Brian is having a good Fall start, too.

Virginia Breeze Elite 11U Division 1

Virginia Breeze Elite 11u Division 1 “Back 2 School Bash” Tournament Champions September 13-14, 2014                                (Brian is the last one on the right in the front row.)

IMG_1184

Boys will be boys….

Back to School and Day 332 of Topical Steroid Withdrawal

Today is Brian’s 332nd day–11 months–free of topical steroids for eczema and also the first day of 6th grade!

“Back to School 2014” has a whole other meaning in our household. Not only is today Brian’s first day of Middle School, but it is also his official first day back IN school. Because of the debilitating effects of topical steroids and topical steroid withdrawal, he spent the last 8 months of 5th grade getting homeschooling, homebound instruction, and eventually doing partial days. Getting up at 6:45am and boarding the bus with his friends was, for this middle schooler, a moment of joy and triumph.

Have an AWESOME day, Brian! Mom and Dad love you!
IMG_1130

IMG_1131

IMG_1132

“This is the day the LORD has made; let us rejoice and be glad in it!” Psalm 118:24