week 13 of topical steroid withdrawal
1. You get to wash your bath tub a lot!
Kline's
only relief these days are hours and hours of baths a day. I put in
apple cider vinegar or a handful of Epsom( to prevent infection) and a
cup or so of olive oil in case he refuses lubrication after wards. So,
there is a lot of greasy slipper tub time and a lot of cleaning my tub!
Actually,, who the hell am I kidding? I really don't clean it as much
as I should!
2. You get clean sheets everyday!
Kline's skin flakes off so much that we pretty much have to change his sheets everyday or it feels like we r sleeping in sand! It is just another reward of topical steroid addiction! He also, oozes a lot so his bed and he get pretty stinky!
Note, the oozing is NOT infection...when your skin is addicted to steroids your capillaries can not close on their own so your fluids just leak out through your open capillaries.
3. You can stop spending all of your money on topical steroids and other cures for "eczema"!
We were getting steroids refilled every month and have wasted probably close to $ 15,000 on treatments for his uncontrollable eczema in the past year. You name it, we tried it... Now all we need is time, ice packs and sunshine( when he can handle it ) and a great support system! No more wasted money!! Thousands saved to pay off all of our bills! ;-)
4. You get to spend a lot of time with your children!!!
With the sleepless nights, I have endless amount of time with Kline that other sleeping parents are totally missing out on! Sure, the kid may be screaming and itching and oozing uncontrol able but that is real quality bonding time!!
5. You will get to see how tough you are and how much you can handle and how you handle it.
It will make you a better person....you Will be able to get through anything, be more compassionate, more understanding, and most everything else in life will be a breeze compared to red skin. I am hoping Kline will not be a total dare devil because of this.
Nothing will seem painful to him and nothing will be scary....now, that scares me!!
6. You get to argue with a bunch of doctors and medical staff!
Since very few doctors and the medical community in general have no knowledge or don't believe in topical steroid addiction you will a chance to stand up to authority! What a rebel!!
7. You will get introduced to one amazing doctor, that questioned why his patients weren't getting better and were only getting worse on topical steroids!
Dr. Marvin Rapaport founder of topical steroid addiction and red skin syndrome, one of the kindest doctors I have ever met. We love Dr. Rap!!!
8. You will gain a new family!
You will meet the most amazingly people in the red skin community that care so much about you. They will be your new tribe because only they can really know what you are going through!
9.YOu may even get a nice week long vacation....too the looney bin!!!!!!!
When you are diagnosed clinically insane from lack of sleep and watching your child go through the most torture ever! Believe me I would not mind going for a few night, how do I sign up for that vacation? ;-)
10. There is plenty of time for cocktails with all the long nights!!! So, Drink up! ;-)
They say 2 bottles of red wine are good for you a day, or was that 2 glasses? Hmm, I may have that wrong! ;-)
11. Cure will happen!
Depending on how long you or your little one used, you will be cured from red skin......you will never have this full body, crazy itchy, oozing, scabbing rash again. You may get eczema after you are cured of red skin, but Kline's eczema was totally manageable before red skin attacked! But we will never use topical steroids again no matter what his skin does!
12. You will appreciate life so much more when topical steroid addition is over!
You will get a life where you are not obsessed with your Child's skin, what they eat, what they touch, what they breath in, who they hang around, what doctor's appointments they have that day, researching on the web day in and day out for a reason and a cure, ripping out your carpet, getting rid of your animals, trying an endless number of different creams and lubricants, talking to medicinal psychic, doing voodoo, and just about everything else you did to try and stop the itchy red oozing scabbing rash all over your babies body.
Omg, what will I do with all of my time? Oh yeah, I know....I will be a red skin syndrome activist to help others so that they get warned before it is too late for them and they have to suffer through red skin like my poor Kline.
So, watch out world , this mama's coming, and I may seem like an enthusiast , to put it mildly, but I will change the world of how topical steroids should be used!
Xxoo Loren
2. You get clean sheets everyday!
Kline's skin flakes off so much that we pretty much have to change his sheets everyday or it feels like we r sleeping in sand! It is just another reward of topical steroid addiction! He also, oozes a lot so his bed and he get pretty stinky!
Note, the oozing is NOT infection...when your skin is addicted to steroids your capillaries can not close on their own so your fluids just leak out through your open capillaries.
3. You can stop spending all of your money on topical steroids and other cures for "eczema"!
We were getting steroids refilled every month and have wasted probably close to $ 15,000 on treatments for his uncontrollable eczema in the past year. You name it, we tried it... Now all we need is time, ice packs and sunshine( when he can handle it ) and a great support system! No more wasted money!! Thousands saved to pay off all of our bills! ;-)
4. You get to spend a lot of time with your children!!!
With the sleepless nights, I have endless amount of time with Kline that other sleeping parents are totally missing out on! Sure, the kid may be screaming and itching and oozing uncontrol able but that is real quality bonding time!!
5. You will get to see how tough you are and how much you can handle and how you handle it.
It will make you a better person....you Will be able to get through anything, be more compassionate, more understanding, and most everything else in life will be a breeze compared to red skin. I am hoping Kline will not be a total dare devil because of this.
Nothing will seem painful to him and nothing will be scary....now, that scares me!!
6. You get to argue with a bunch of doctors and medical staff!
Since very few doctors and the medical community in general have no knowledge or don't believe in topical steroid addiction you will a chance to stand up to authority! What a rebel!!
7. You will get introduced to one amazing doctor, that questioned why his patients weren't getting better and were only getting worse on topical steroids!
Dr. Marvin Rapaport founder of topical steroid addiction and red skin syndrome, one of the kindest doctors I have ever met. We love Dr. Rap!!!
8. You will gain a new family!
You will meet the most amazingly people in the red skin community that care so much about you. They will be your new tribe because only they can really know what you are going through!
9.YOu may even get a nice week long vacation....too the looney bin!!!!!!!
When you are diagnosed clinically insane from lack of sleep and watching your child go through the most torture ever! Believe me I would not mind going for a few night, how do I sign up for that vacation? ;-)
10. There is plenty of time for cocktails with all the long nights!!! So, Drink up! ;-)
They say 2 bottles of red wine are good for you a day, or was that 2 glasses? Hmm, I may have that wrong! ;-)
11. Cure will happen!
Depending on how long you or your little one used, you will be cured from red skin......you will never have this full body, crazy itchy, oozing, scabbing rash again. You may get eczema after you are cured of red skin, but Kline's eczema was totally manageable before red skin attacked! But we will never use topical steroids again no matter what his skin does!
12. You will appreciate life so much more when topical steroid addition is over!
You will get a life where you are not obsessed with your Child's skin, what they eat, what they touch, what they breath in, who they hang around, what doctor's appointments they have that day, researching on the web day in and day out for a reason and a cure, ripping out your carpet, getting rid of your animals, trying an endless number of different creams and lubricants, talking to medicinal psychic, doing voodoo, and just about everything else you did to try and stop the itchy red oozing scabbing rash all over your babies body.
Omg, what will I do with all of my time? Oh yeah, I know....I will be a red skin syndrome activist to help others so that they get warned before it is too late for them and they have to suffer through red skin like my poor Kline.
So, watch out world , this mama's coming, and I may seem like an enthusiast , to put it mildly, but I will change the world of how topical steroids should be used!
Xxoo Loren
Loren, you are one hell of a Mama!! We are all truly unworthy.
ReplyDeleteThanks caroline! I look better in paper than in real life! ;-). I don't feel like a good mama when I am screaming at Kline at 4 am to please sleep!! Love you!! Xooxxoxoox
DeleteYou are very strong Loren and so is little Kline! I personally love #6, getting to be a rebel, 9, 10, and 12!! Love it! You're awesome, ttys! Praying you you and Kline every night! I love little Kline!! I can't stop saying it, he is just so darn cute and so sweet and innocent, so not fair a little baby like him has to go through this. I hope my baby looks just like him!! The cutest thing ever. I won't kidnap him I promise! ;)
ReplyDeleteWhat a fab post! I love the way you are using humour to get through this tough time.
ReplyDeleteWe are all your "red skin" family and love Kline very much.
I hope you get some sleep soon Loren. i'm crazy when i get no sleep!
Hugs to Kline, he's such a cutie. x
Loren- you are amazing. How you still have a sense of humor through this HELL, I don't know. And little Kline man is our hero!!!There are a number of kids in our group, but I think Kline is one of the youngest. He is so brave. He will be known around the world and will help so many others. We love you both!And agree with Rochelle, Kline is the cutest ever!Looking forward to our children hanging out one day soon itch free and you and me drinking our HUGE glasses of wine together and not having to worry about staying sober to chase off the Scratchy Monster at night because he will be long gone!Through all of this, I have learned that the human spirit is so much stronger than I ever gave it credit for.I love your top 12! 12 being my favorite because I can so relate to all those crazy precautions you listed. I look forward to the day Kline gets to enjoy life for the first time, itch FREE! and for you and Denny, worry free days with a new sense of freedom. Thanks to Dr. Rapaport, Kelly, Joey, Rochelle, UK Kelly, and the rest of the most fabulous ITSAN 'family' ever - (Louise UK - love you and all your encouraging words along the way!):) we have a new life, a better one, a life with much deeper meaning and appreciation. We don't take a single itch free day/night for granted and we are out there living again - a fuller more meaningful life! Kline will be too!!!And we will be there right by your side to help you celebrate that day. It is so painful to see Kline's pictures. I still cry when I read your blog posts.You are a special lady and strong warrior mama! Much admiration and love to you Loren and your little man (and Denny!).xo
ReplyDeleteNicely said Kristina. I sure do miss you! You're an awesome, awesome lady. I hope to be drinking a HUGE goblet of wine one of these days with you two, when I am healed and itch-free too! xoxo
ReplyDeleteI have only hugs xoxoxoxoxoxoxo
ReplyDeleteLoren, Have you considered contacting Oprah to do a show on TSW?
ReplyDeleteHi! It’s been almost 10 years since you posted this. How is Kline doing now?
ReplyDeleteHi! It’s been almost 10 years since you posted this and I wanted to know if Kline is all healed?
ReplyDelete