The lost summer...30 weeks off topcail steroids

 kline at the sulfur hot springs!

My husband is not a big talker and rarely shows emotion. But this past weekend he broke down saying,

" 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

Please help Abigail!!

Please help!!! This little girls need to see Dr. Rapaport immediately! She is in the same stage of red skin or topical steroid withdrawn as Kline, 29 weeks off, but is only getting worse and she need to see Dr. Rapaport. 

 

Itsan (international topical steroid addiction network) non profit

 needs funds to help send her from Canada to LA. Please go to http://www.itsan.org/

And donate in Abigail's name to help her get better! Her doctors in Canada are no help and send her away not knowing what to do to help her. Anything will help so give what you can!! Thank you so much, Loren and Kline!!! Xoxoxoxoxo

klines visit to the hot springs!

Kline is 29 weeks off steroids and we ventured out big time. We went to the hot spring near our home, about 45 minutes away. It was hard to talk my hubby into going, as we are so worried about flares and not being able to get to the tubby!!!!  But I talked him into it and we went. He flared on the way there, not fun. But we got there! This is the farthest we have gone from the house since April 30th when we got back from LA when we went to see Dr. Rapaport.



We get to the spring and get to the pool, now I have to mention it is a clothing optional facilities, so lots of shlongs blowing in the wind and boobies bouncing! ;-) Kline gets to the pool with lots of nakie people and the first thing he says is......

" there are lots of funny noodles at this pool!"

Well, Denny and I just started laughing , there were some very funny noodles at the pool, one of which was pierced!! But our son was actually talking about the floatie pool noodles. Not the peenee's!  But it was great to laugh! Thanks Kline!


He is still having a pretty hard time and I think we will visit the hot spring more in the future to hopefully speed up the healing!!! A lot of his skin feels like sand paper!  His neck keeps oozing but he is having a few breaks here and there!  Fingers crossed for more healing!

So, keep you funny noodles floating!
Xoxoxo Loren

The up and downs of steroid induced Eczema!

(all of the pictures from this last week are not during a flare.  he is much redder while flaring! )

Aka red skin syndrome, aka topical steroid addiction withdrawal. Call it what you will, it sucks, and so do the ups and downs. The process of better days that are ripped away from you in seconds. Back to the all day flares of the itchy bastard! Getting your hopes up just to get them knocked down.  I am trying to learn to appreciate the no flare hours and try not to get my hopes up that they will stay.  Easier said than done!  I thought by 6 months we would see less itchy flaring days but maybe by a year???? Who knows...if a year comes and he is still being attacked by the itchy bastard can you please remind me not to set a date for healing to be done.  There is not an exact date of healing to happen and setting one just sets me up for disappointment and depression!

Week 28......Kline is itching all night long and really not sleeping!  Which mean I am not sleeping!  He is oozing at the neck still, which shouldn't surprise me as that it where we put most of the steroids, there and the back of the knees.  His spirit is good except when flaring.  He says I love you, to me through all of the flares, maybe he is trying to sooth my pain? He is brave and strong and amazes me every day.  But do not even talk about the " bad medicines".... He just doesn't want to hear about them anymore. 


The other day he said....
"mommy, don't tell me about the bad medicines! But, why am I itchy?"

Well, what the hell was I supposed to say???

That IS why you are itchy....so I said,

" I don't know, Kline!"

He cracks me up! Don't know what he wanted me to say, but steroids was not it! ;-)

Hoping for itch free days soon! Xoxox
Loren

Ugh, September you are here...I have been dreading you!!!!!!

Here we are in week 27....6 months and 1 week off steroids. Kline is still terrible. Last night he itched and oozed all night, didn't sleep at all.  Even with his low thc medical marijuana olive oil drops we give at night, that were working great for sleep, they have now stopped helping!  He is still in the tub the majority of the day.  I was so hoping to be much better by now, but he is not!  His neck is oozing so much and scabbing like it was in may! 

And here comes September! Yuck!  Our help, my sainted mother, has to go back to full time work.  She watches my brothers 3 kids 50 hours a week...so our source of help is gone.  That means I will have to work till 2:30 am every night but Friday.  No one will be here to help with laundry, dishes, vacuuming, cooking...and my mental support.  I will not get any naps no matter how little sleep we get at night.  My mom also did all of our shopping in Reno since we can not even drive that far in the car yet!  So no more trader joe's or whole foods, a staple in Kline's food allergy life!

I am so scared of what September will be like....I am losing my shit so badly WITH my mom's help, what will I do WITHOUT her?  I really don't know!?!?!?!? 


All I can do is hope that Kline will improve and fast!  Lack of Sleep is the worst thing, so even if we just got that to improve that would be a help.  A terrible challenge is in store for Denny and I......can we step up and handle it after being beaten down by the itchy bastard for over 6 months???? Only time will tell!!!

Please send some fast healing thoughts for Kline our way, we need them!! 

And send that itchy bastard back to the dungeons, where he belongs, never to be seen again! Sorry I've been watching "game of thrones"!! Love it!!!!

Here we go! Maybe I should double up on my Paxil and get an IV drip of chocolate and wine!!! Then maybe, just maybe, I can do it!?!?  Or we could win the lotto, quit work and get a cleaning lady, I'd be fine with that too! ;-)
Xoxox Loren