Since his birthday on 6/1, Brian has made tremendous gains in overall strength, endurance, function, sleep, itch management, and tolerance to sweating and heat. Going into Brian’s 9th month off topical steroids, the light at the end of the tunnel is getting brighter. So what has he been doing since his skin, sleep, and itching have been more manageable and not incapacitating?
BOWLING with friends (Brian’s the kid wearing the red shirt on the left);
PLAYING corn hole, bocci ball, ladderball, wiffle ball, and x-box with friends in the neighborhood;
BIKING in hot, humid weather with mom & waiting for mom to catch up and catch her breath;
PLAYING BASEBALL in all sorts of hot and humid weather;
and a wee, tiny bit of ‘reading, riting, and ‘rithmatic–AWWWW, MOM!
It’s easy to say, “I’m getting better” when you are 9 months into topical steroid withdrawal and feeling good and functioning almost back to normal, but how do you keep your spirits up when you are just beginning this recovery process or are in day 50, 75, 100 and the redness, burning, itching, stinging, oozing, and shedding are relentless or you are finally falling asleep at 3am, 5am, or 6am and waking up at dinner time? How can you know you are healing when progress is miniscule or seemingly nonexistent? Perhaps by looking at the bigger picture.
Keeping a daily log of symptoms, function, sleep/wake times, etc. may give you some perspective, something to look back on and see your progress. Don’t rely just on your memories of “what it was like” because I don’t think we truly remember what it was really like unless we have it written down with all the gory details to remind us. I literally had forgotten how bad the nights really were until I re-read my journal and Log entries from the early days. Then I think, “Holy Cow! How did we live through that?” With patience, prayers, and the grace of God.
I’ve mentioned before that I am a bit anal about documentation–and everything else, for that matter. Well, what started out as a food journal in May 2013–to make sure Brian avoided eggs, fruit-sugar combos, and dairy–became a monster journal that attempted to correlate his symptoms with just about everything: diet (sugar, eggs, wheat, dairy, etc.), temperature, humidity, activity, shower/tub/none, moisturizers/no moisturizers, vitamins/supplements, and stress, just to name a few.
When times are not so good or Brian’s skin is acting crappy or when it feels like Brian’s never going to get better, I look back at one of the early days like day 25 or 50 or one of the previous months like January or April or the daily Log on this blog and compare it to what’s going on now. Then I see that what’s going on now is so much better than what happened in the past, and it reassures me that Brian continues to heal. Reading old entries also makes me thankful for what he is now able to do. I feel joy in the simplest of his accomplishments.
If you are dealing with the physical manifestations of TSW and are miserable, think back at your lowest functioning point. Are you better off now than then, if even just a little? Have you spent a bit more quality time with family or learned to appreciate the simple things in life, like watching your child with TSW sleeping peacefully, even if it’s just for 10 minutes? The low times in our lives are not for nothing; there is value in simplicity, silence, and solitude.
Challenge yourself to find something each day to be thankful for, to focus on what you can do, and to focus on your blessings. It’s not easy, but as you continue to focus on the positives and always do the best you can with what you have, you’ll soon find yourself several months farther down this TSW road and that much closer to recovery.
And remember, there is always one positive constant that you can focus on: you are off topical steroids and doing your body good. Stay strong!
Here are some excerpts of the food/activity logs I’ve kept. Crazy, huh? Well, TSW can drive you crazy if, like me, you aren’t a bit off your nut already. 🙂
CLICK ON PHOTO TO ENLARGE.
HAPPY NEW YEAR! nearing 100 days….
FEBRUARY 2014 STARTED BLOGGING AND LOGGING online and stopped excel journaling
BELOW ARE SOME RECENT LOG (in this blog) entries to compare to early TSW entries. Biggest improvements are noted in Brian’s move back to his own bed upstairs, increased ability to get sound sleep, improved sweating and heat tolerance, fewer incapacitating itch fests, and return to normal 10/11-year-old boy activities. (The most recent date is at the top of each page.)
It seems that as the TSW is running its course, Brian’s underlying eczema is returning. However, the itch of eczema is now a piece of cake compared to what he has experienced with topical steroid withdrawal. All praise, honor, and glory to God for Brian’s improved health and continued healing!
No matter what your circumstances, may He bless you with peace, comfort, and healing, too. 🙂
“O LORD my God, I called to you for help and you healed me.” Psalm 30:2