Today marks Kline's 3 year anniversary of being off topical steroids. 3.5 years of pure hell. All consumed by itch, worry, and pain. Watching your child suffer for so long and so intensely is the worst thing I have ever experienced.
We have lost so much of our lives from his steroid addiction withdrawal ..... Not only the pain he has been in, but also, financially we have spent probably $20,000 in the last 3 years trying to speed this thing up. Which nothing has helped.
We have nearly separated from the stress this has put on our marriage, luckily we have fought through the urge to leave and have stuck it out because we do need each other.
We haven't had but maybe 5 good nights for sleep in 3 years and kline still needs the tub nearly every night.
But he is better than 3 yrs ago.....most of his skin is beautiful!!!! His itch is not constant, and he no longer stays all day and night in the tub. He can go to school most days and ski school. His sleep still sucks but even that is better than it used to be. He used to go 36 hours with out sleeping and now he only wakes a few times to have a short itch fest.
I hope with every inch of my body that next year at 4 yrs off I will be able to say that kline is living fully again. Even if he has eczema I hope that his itch does not fully consumer us as it has the last 3 years.
I have amazing support with our parents and my friends and www Itsan.org support is immeasurable!
I am so thankful to all of them for helping us "manage" the last 3 years.
I have an amazing husband that stayed even when I was at my worst.
And I have one of the bravest boys on the planet, that even when his feet as cut up like ground beef he'll still painfully put his ski boots on, ski, and sing the whole time he's going down the mountain. Kline amazes me...I don't think I would have ever been as brave as he has been.
I hope that klines story , blog and my work with ITSAN will prevent others from suffering like our family has and most importantly that no child will suffer again like my son has. Xoxoxoxxo Loren