Fashion and Topical Steroid Withdrawal

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!  🙂

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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

Patience and Topical Steroid Withdrawal

I have heard your prayer, I have seen your tears; surely I will heal you.” 2 KINGS 20:5

Dr. Rapaport and Dr. Fukaya say that everyone who undergoes topical steroid withdrawal (TSW) will heal–eventually. That’s the kicker: eventually. However, we all want healing NOW, or at least in a few days or weeks NOT the months and years that it takes the body to recover from the damage caused by the topical and other steroids! The TSW veterans say, “You will heal, but it takes time.”

A lot of TSW sufferers admirably try to find ways to end TSW sooner, only to find that the ultimate healer seems to be time. Through their efforts, though, some (T. Scarpulla, L. Chua) have been able to be “more comfortable” in the misery that is TSW or found ways–either physical or psychological–to facilitate their body’s healing or their acceptance of the situation so that they can function better and return to some semblance of their lives while weathering the ups and downs, calms and flares of TSW. Does this mean they have shortened the total withdrawal period? Not necessarily, but they have “sped up” the healing of certain parts and “sped up” their return to a level of comfort and function that has allowed them to live their lives more fully in the shadow of TSW instead of merely existing in the darkness of flares, pain, and itch, wishing away the time. Don’t despair.

The early weeks and months of TSW are incredibly hard, especially the night time. I don’t know about going through it personally as an adult, but I can say that watching my child go through the burning, itching, oozing, shedding, smelly hell of withdrawal is agonizing and heart wrenching. I want to wish the time away for him so that he doesn’t have to suffer so much, but wishing doesn’t make it so. So, we accept that this is our life right now; it is what it is, but we can still make the best of what topical steroid withdrawal dishes out. Complaining and resisting often make things worse and you more miserable. Acceptance of the situation can free you to be more creative in how you manage the unsavory symptoms of steroid withdrawal and allow you to live as much as you can rather than just exist. Acceptance may also help you act in ways or try new things or explore other options that may lead you to faster healing. And if you do find that miracle cure, please come back and share it with us! 🙂 No, acceptance is not “giving up.”

Have hope and courage. During this challenging season of your lives, cultivate patience, praise, thanksgiving; sharpen your senses to see and feel the good that is in your lives. Go beyond the itch and pain, and focus outside of yourselves if you can. Have hope; give hope. You will heal.

Memorial Day

On this Memorial Day, let us remember the many men and women in our country’s armed forces who made the ultimate sacrifice so that we can enjoy the freedoms we have today.

TRADITIONAL OBSERVANCE:

“On Memorial Day, the flag of the United States is raised briskly to the top of the staff and then solemnly lowered to the half-staff position, where it remains only until noon.[41] It is then raised to full-staff for the remainder of the day.[42]

The half-staff position remembers the more than one million men and women who gave their lives in service of their country. At noon, their memory is raised by the living, who resolve not to let their sacrifice be in vain, but to rise up in their stead and continue the fight for liberty and justice for all.”

 

“Greater love hath no man than this, that a man lay down his life for his friends.”            John 15:13

A Prescription to Sleep In

At the start of May, Brian had a few days where he was able to get to school by 9:45am without my waking him out of a sound sleep to get up. Yay! Progress! We thought he was just going to do better and better each day and meet his goal of getting to school on time and staying the full day without an itchfest meltdown.  Unfortunately, last week’s flu and the fever from the week before just set him back. Now, he is sleeping soundly until at least 9:00am or 9:30am again, and we are lucky to get him to school between 11am and 12pm.

Brian’s teacher/homebound instructor has been so wonderful, accommodating, and understanding, and I just hate burdening her with the unpredictability of it all! She has enough on her plate with 30 students.

Yesterday Brian started school at 11:30am. A few hours later, I was signing him out at 2:45 pm for a doctor’s appointment, and a staff member commented, “So, Brian’s coming in just whenever he wants to now?” She probably did not intend anything by it, and I was overly sensitive about the tone, but this kind of upset me since it’s not like we want to interrupt class at all hours of the morning! This is part of his physician-approved treatment plan; did she not get the memo?

I’m sorry he can’t get up early enough to ride the bus and get there before the bell rings. I’m sorry I can’t get him there at a consistent time every day yet. He’s still scratching through the night, breaking up his ability to sleep soundly. Then I had to wake him up from a sound sleep today to get him there “early” at 9:15am (school bell rings at 9:10 am) for an SOL test. He can do this for one or maybe two days in a row, but we have found that his body then crashes and needs the longer sleep in the mornings on the following days.

Though Brian is functioning better, his body clock is still a bit off, and his body is still healing, which happens mostly during sleep. Since he is not sleeping soundly at night, he needs to sleep as long as he is able whenever he does fall asleep, which, unfortunately, is during school hours.

Getting to bed earlier doesn’t work either–even when he wakes up early that day–because his body will generally not let him fall asleep before 10:30pm. However, this is a great improvement from the 3am and 6am sleep times from a few weeks and a few months ago!

It is a challenge to balance the needs of your child against societal expectations. I am going to do what my child needs for his body to heal, and right now it needs all the sleep it can get.  We will continue to get him to school as soon as he can get there and save the forced “shake awake” early rising for SOL testing days. After all, this, too, is just another step forward on his road to recovery.

“The LORD is my helper; I will not be afraid. What can man do to me?”   Hebrews 13:6

 

TSW Takes a Backseat to the Flu

After a spectacular Monday (5/12) from beginning to end in terms of itch and function, Brian came down with a 104.6 fever and was out of commission Tuesday and Wednesday. I’m thankful it came during a relatively “stagnant period” of his topical steroid withdrawal (TSW) because I can’t imagine what it would have been like to add flu misery on top of the misery of a full-blown TSW flare.

I don’t know if there is such a thing as a “stagnant period” with TSW, but I refer to it as “stagnant” because although Brian’s skin continues to shed, the red “patches,” dots, markings, etc. are about the same day after day. Sometimes they lighten and disappear (like when he had a fever,) and other times they come back–no worse, no better–and just  hang around.  It’s almost as if Brian’s underlying eczema is showing up now, as the TSW is  gradually resolving. The various raised bumps, patches, and scrapes or markings are not necessarily more itchy, but they are plenty annoying to me because now I’m wondering what to do with these.  Hmmmm, let it go, or rack my brain again to try to figure out what’s going on and what I should do about it?  This is Day 222 off topical steroids.

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Red, raised bumps 5/14/14

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Right arm/elbow 5/14/14

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Left arm/elbow

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Left neck/shoulder/shoulder blade 5/14/14

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Red, raised bumps on chest

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Could these darker red patches be “real eczema”?

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Skin of face and neck intact

Skin of face and neck intact

Things for which we are thankful:

1) the skin on his face and neck have remained intact for several weeks now;

2) the itching is still ever present but not 5/5 severity all the time;

3) he has had 2 occasions where he was hot and sweaty but did not have incapacitating stinging or itching that prevented him from continuing the activity.

“Be joyful in hope, patient in affliction, faithful in prayer.” Romans 12:12

Darkest Before the Dawn

Well, Brian’s fever did rise to about 102.5 by Thursday night and Friday morning, so he stayed home from school. He slept, did not scratch, and his skin cleared up head to toe, soft and smooth as a baby’s skin! Thank God for fevers! When he started scratching again and his skin started getting that light rashy look Friday evening, I said, “His fever must be breaking.” Sure enough, his temp was 98.6. The body is a curious thing. At least he got a 24-hour break from the maniacal itching.

Unfortunately, since he slept/rested all Thursday and most of the day Friday, he was wide awake and wired by Friday night. We saw all those weeks of finally getting his body to sleep by 12am, 11:30pm, and 11:00pm go down the drain. Noooo! Friday night was just as sleepless, scratchy, and screamy as a few months ago. He was still awake around 3:30am, slept late, and got out of the shower around 1pm Saturday afternoon. Back to the drawing board.

I was mad, resentful, frustrated, angry, pissed to the max! To top it all off, I caught the virus that Brian had–sore throat, congestion, malaise, non-productive cough–minus the fever. I spent all of Mother’s Day in bed but was happy that Brian and my husband were able to get out in the fresh air and sunshine to run and jump and move. I tried to think of various scenarios that would involve committing myself to the looney bin without impacting Brian’s and Kevin’s lives, but couldn’t come up with any, so I just stayed put and pleaded with God as to what he wanted me to do: “Thank You for this opportunity to rest, but what do You want me to do, LORD?”

Sleep and exercise deprivation aside, why was I angry and frustrated? After all, Brian is the one who is suffering, and he’s handling it as well as anyone could expect a 10-year-old to handle chronic pain, itch, lack of sleep, and missing pretty much most of his fifth grade year in school.

I guess it boils down to: if things aren’t going as (I) planned or if (my) expectations are not met, I get mad. The “plan” was to gradually get Brian back to school full time as the night itching gets better and his body clock gets back to normal. Well, it seemed that his clock got messed up again with this latest incident, which messed up my “plan.” What did God tell me? “Stop planning. Let go of expectations; let go of what other people think; let your son heal without pressure from you. I died to set you free, and that includes freedom from compulsive planning.” OUCH.

So, I let it go.

Last night, Brian slept an amazing 12am-6:58am with minimal disruptive scratching, and I dropped him off at school at 9:12am–bell rings at 9:10am. This is the earliest he has been able to get to school since last October. GOD is Good….I should give up planning altogether and just listen to Him more often. 🙂

“Many are the plans in a man’s heart, but it is the LORD’s purpose that prevails.” Proverbs 19:21

Please Pass the Barf Bag

Thanks for all the kind words and encouragement. I can really use them today. The TSW roller coaster we’re on just hit the loop-de-loop and is plunging into a dark tunnel….again. Baarrff!

Brian’s had a physically and emotionally challenging past few days and nights; or maybe I’m the one who is physically and emotionally challenged? His skin has been a little rashy, but not excessively worse than the last few weeks. After the morning ordeal of getting to school, I get a call 2 hours later that Brian’s been to the clinic twice and that now he’s complaining of a headache and a sore throat.

Brian’s home right now with a mild fever and is resting. I like fevers as long a they are below 102 and are not making Brian uncomfortable. They are the body’s way of fighting off  “bad stuff,” and every time Brian gets a fever, he stops scratching, and his skin clears up! Looking forward to a little break for him, even if it comes from a hot head.

Just a reminder to really enjoy the good moments because they are fleeting! But they will come again….

‘And He said to me, “My grace is sufficient for you, for My strength is made perfect in weakness.” Therefore most gladly I will rather boast in my infirmities, that the power of Christ may rest upon me.’

2 Corinthians 12:9 (NKJV)