" This has been the lost summer!"
And he is completely right!
Although it really has been the lost winter, spring, summer,and now fall!
But, I guess because there is so much fun to be had in summer, summer was the biggest blow.
We watched our friends, take trip, camp, hike, bike, go to the pool, beach and lake. Go on vacations, have picnics, play at the park. Have parties, wedding, reunions, baby showers and births. All the while, we have been itching Kline, rubbing Kline, sitting in the tubs all hours of the day, and not sleeping at night. Watching our baby in the most terrible pain, itch and burn ever and not being able to do anything to help him. We haven't really left the house since April and when we do it is so nerve racking waiting for the itchy bastard to attack it is almost not worth it.
My husband and I go to work and come home to switch off care for Kline. I grocery shop after work which is normally between 11:30pm and 2:30am. Thank god for amazon! We are tag team parents, 2 ships passing in the wind.
I hope that this fall will be our last lost season that the steroids will take! I hope to never lose another season of our lives again!
Kline is 30 weeks now, almost 7 months off topical steroids! And we have a lot more healing to go through! He skin looks amazing in the morning and then the capillaries freak out and knock him right back into the tub.
I would say his skin is 80% healed...but the flares still hit him hard. The hot springs and dead sea salt in his baths seem to be helping the look and healing of his skin. He loves the way the hot springs feel, wish we lived closer to them!
May none of you lose a summer like we have by the itchy bastard! Be careful with your steroid use, please! Learn from our mistake!
Xoxo Loren
Loren,
ReplyDeleteWe can so relate to your 'lost' summer - lost year. Heck think of all the years we lost of life because of steroids (I even joke with Andrew about how many years it took off our life because of stress) - even before going through withdrawals, Keira was miserable. But I promise it will get better and next summer you will be out there camping, hanging out with friends, going to birthday parties, etc. We watched the world around us as we sat at home and scratched and itched and rubbed Keira ALL day and ALL night. I couldn't even relate to the outside world anymore. Sometimes, I would get really angry, sometimes I would get really sad, and sometimes I just didn't care because I was too tired to even feel. Andrew and I were like two ships passing in the night as well - it was awful. We were just going through the motions, truly on survival mode. It really is like drowning and just trying to keep your head above water - treading and treading and treading... Things like grocery shopping, cleaning, even taking a shower - were all HUGE challenges, not just something you do.
But this year, this summer was a celebration for Keira's healing and next summer will be yours for Kline. We will be right there celebrating with you guys. Love you lots!! Can't wait to see you! xo
I second what Kristina so eloquently said! We have all lost too much time to steroids. Not just this summer, but all the years of not going to certain places for fear of reaction, not going certain places because the skin was so broken and covered in eczema, not going to places because your child looked so horrible that complete strangers would stare and say, "What's wrong with him?" with disgust in their voice. No one truly understands how debilitating eczema, steroid induced eczema and steroid withdrawals truly are. It is all consuming. You two are wonderful parents to do this for your child. Thank God you found out sooner rather than later..... although you and the Denny will never forget this lost summer, Kline will. The cost of losing this summer, this fall, this year will be worth it when he only has to lose this one year and not 12+ because of these damn steroids!!!!
ReplyDeleteThink how far you have come. 80% is a big acheivement! Hopefully things will get better and better from here.
ReplyDeleteKline looks like he is enjoying the hot springs. He is such a cutie and reminds me of my little boy.
Here's hoping next summer will be more fun for you all. x
Thanks ladies!! It is amazing how great his skin looks and feels and how itchy he still is....we are on our way!! But it could always hurry up!
ReplyDeleteOh honey, been there and done that and it was sheer bloody hell watching people have fun while being stuck indoors, it does get better.....
ReplyDeleteAnd agree with everyone else, at least he is young enough that he will not waste any more years on this.
Keep on keeping on chick x
Even though you're still dealing with the itchy monster look how far you've come! Kline looks great and you've got 7 months behind you -- 7 months closer to healed. It's not over yet but hopefully the worst of it is behind you.
ReplyDeleteMy husband will have been off the prednisone for a year come Thanksgiving. He gets chiropractic care once a week to help his body detoxify from that and the other drugs he was on for Crohn's Disease (one of them for over 20 years!) plus he sees the naturopath regularly to manage the detox and his Crohn's. He went recently and switched remedies -- the flaking has almost stopped. Most of his skin issues center on his calves now since the detox travels downward but we're seeing dramatic improvements. I even got to go THREE WHOLE DAYS without changing the sheets or vacuuming the bed/floor. What a treat.
And to think as he weaned off the last prednisone pill it all started with a red eye and red itchy ears ... what a year.
Wishing you all well.