Stop topical steroid abuse!

Thursday, June 14, 2012

Depression is depressing!

Depression is depressing! 1st off if you haven't please sign this petition to help get proper labeling on topical steroids,so this does not happen to anyone else!!!!! Here is the link I have been really down in the dumps lately.....I thought kline was seeing improvements and blamb oh! that freaking itchy bastard strikes again!  Damn you itchy bastard!!!!  I curse you! I worry that when he is healed I will still be stuck in my depression...but this morning he had about 30 minutes of playing outside with out a flare and we actually enjoyed it!  I was of course hovering over him and super worried the sun would flare him. But I saw hope of the having fun together again! Lately, Our house feels much like a funeral home. People come to visit and I find it hard to smile.  I cry a lot and hate leaving Kline to go to work.  I am all consumed with his flares, pain and itch.  There is not a second of the day I do not think about him and how he is suffering.   We are starting to look into alternative medications that I am hoping will help! But only time will tell, if we can even get them.  I will blog more about this over the weekend when we know more. Stay tune it's going to be a hot topic! ;-/ My birthday is coming up on the 18th and there is only one thing I want.  My son's suffering to end!  So, if someone can wrap up Kline all healed and drop him off at my front door that would be the best present ever!   I know what I'll be wishing for when I blow out my candles! Klines update....almost 16 weeks, 4 months of pure hell! He is still flaring like crazy. He will be pale as a ghost then seconds later red as a lobster.  The itch, burn and pain are insane!!  He is sleeping better I think because we are giving him elderberry night time syrup!  He has slept 8-12 hours a night since starting it! He still is oozing very little and his skin looks pretty good, a few scabby spots but not bad.  Now, If we could get the flares to stop coming and ease the pain, that would be awesome! His friends and cousins came over and he can't even play with them he is flaring so badly. Today his cousins came over and he had to be in the bath, everyone got in and he flared the whole time. He kept asking his older cousin to pet him.  Very sweet! Although Quinn got sick of it pretty quickly and said, " why am I the only one working ,here?" lol He loves seeing people and misses everyone so much.  It is just hard because he is in so much pain all the time he can't enjoy his company! Well, that's enough depressing crap from me! Xoxox Loren