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 http://www.gopetition.com/petitions/label-all-topical-steroid-cremes-of-potential-severe-ad.html 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 future...us 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
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8 comments:

  1. G-ManJune 14, 2012 at 4:09 AM

    Loren, relish the time that Kline is able to play outside and in the tub. Kline's skin looks a thousand times better than when we were there just a few short weeks ago. I am glad Q & RK were able to visit and are waiting for the day when you report that they had a GREAT time playing together without the itchy monster. We are so glad to hear that Kline is getting some good sleep time, his body is healing and he needs the rest, SO DO YOU! Nothing is more depressing than getting no sleep, waiting for Kline to wake up with the itchy monster.

    Please don't be so hard on yourself. You ARE doing such a good job taking care of our little guy. It is heartbreaking not to be able to be there everyday for you.

    We love you very much and pray for Kline's quick healing.

    Love you!

    Marilyn and Dad

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  2. Peace with LessJune 14, 2012 at 8:15 PM

    I don't even have appropriate words for what you must be going through. I am encouraged though to hear of his improvements - sleeping through night is a miracle we've received only a handful of times in the last 2.5 yrs - course I'm up with the new babe, that doesn't count ;)

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  3. SøskenmammaJune 15, 2012 at 1:25 AM

    Have you seen this book :) "Rachel has eczema" even thougt Kline have red skin syndrome this might be a nice book for him. Have a look at my blogg were there is a pic and what the books is about in english :) Wish you a nice weekend.

    http://sosken.blogspot.no/2009/12/rachel-has-eczema-leigh-jenny-and-fox.html

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  4. kelouJune 15, 2012 at 8:39 AM

    Hello hon, seems like we are at the same place at the moment, argh this sucks! x

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    1. UnknownJune 15, 2012 at 2:06 PM

      Kel, you have every reason to be depressed! Xoxoxoxoox

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  5. Megan AlbaJune 15, 2012 at 1:40 PM

    I was going to message you this weekend re: alternative therapies for relief. I've been using some and it has helped! The trick is finding the right combo, which I think I finally found this week. My skin went from red & nasty to the healthy "flaking" stage very quickly. One of the therapies I'm using, I saw improvement overnight.

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    1. UnknownJune 15, 2012 at 2:05 PM

      Message me! We maybe trying some thing very alternative in a week or so! Thank you, what week r u in? Heal fast! Xoxoxo

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  6. Megan AlbaJune 15, 2012 at 2:20 PM

    I'm going on A YEAR. So... yea.... it's time for something besides red, itchy skin. :-)

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