Monday, June 3, 2013

Skin Deep

I apologise up front.  This is a post for me.  It's not going to be funny or entertaining.  My aim is to offload by writing this and putting my feelings out there, and in so doing, hopefully release the unbelievable hatred that I have in my heart, that has built up over the last 3 ½ years.  After I have published this post I will hopefully not give this issue any more power and will attempt not to discuss it again as it has begun to consume me.  I cannot promise not to cry when the daily ordeals get the better of me but I will attempt to  leave it up to God and the Universe to sort out as I am unable to deal with it on my own anymore.

Eckardt Tolle told a story in his book entitled A New Earth about a monk who, while walking with another monk through the mud, saw a young lady in a beautiful new kimono needing to cross the channel of mud in which they were walking.  She was obviously distressed about dirtying her new clothes. A monk may not touch a woman, but the monk took pity on the young lady and picked her up, carried her to the other side and carried on walking with his friend.  The monks walked together for many hours and at last the other monk could take it no longer and told his friend that he was horrified that he had touched a woman and how could he do that etc etc.  The first monk turned to him and said "I put that woman down hours ago, have you been carrying her all this time?"  This is not a direct quote but how I remember reading it 5 years ago.  This has stuck with me and I think about all the things we carry in life that no longer serve any purpose.  I hope to "put the woman down" after this post.

As a mother of 3 young children, there are very few things that I can't handle.  There are a lot of things I don't LIKE to handle like cleaning up after sick children, vomit, diarrhoea, snot, nebulizing a chesty toddler and the whole "bed wetting" phase, but there are very few situations in which I feel totally helpless.  When Tomato reached 3½ years old, that changed.  That was when our family was first introduced to our arch enemy.  This enemy was so devious and seemingly non-threatening that I didn't even see it coming!  I saw it as a small issue that could be dealt with, as with any other minor childhood issue.  Little did I know that this was the start of the roller-coaster ride that would shatter our family's peace and bring me to tears more than any other issue in my life ever (including my emotional teenage years where I burst into tears regularly, either due to a boy, or punishment or not being allowed to go to a party - serious issues for a teenager!)

It began with a few small patches of red skin which Tomato scratched.  This carried on for a few weeks and I put various lotions and potions on her to alleviate the rash.  Soon I realised that it was not going away and when I discussed it with her teacher she told me not to worry as it was "just childhood eczema."  Hmmmm well I knew what eczema was, my sister had had it and it wasn't a big issue but I knew that it could last for years, so in order to tackle the problem as naturally as possible, I took Tomato to a Homeopath who specialises in children with eczema.  She told me that the biggest causes were wheat, dairy and sugar.  She said we should eliminate all of these from her diet, give her some homeopathic medication, give her 16 capsules of omega oils per day and keep a strict food diary. Now when I am told by a healthcare professional to do something, I follow it to the letter.  I informed the school and all friends and family members and we instituted the new diet.  After a few weeks the school contacted me and asked whether we could please make an exception to the diet on Friday as it was bakerman and Tomato was devastated that she could not join in when the other children received a cupcake. Already she was eating rice cakes with Marmite instead of sandwiches with cheese or jam like her friends and was not allowed Oros or pudding or birthday cake with her friends.  I agreed and honestly I didn't see any change in her skin on Fridays.  When I took her to the GP for a chest infection I was told in no uncertain terms that the volume of omegas was ridiculous and medically her liver would have a problem dealing with that much oil.  I reduced her consumption to 2 capsules (still double the dose as specified on the packaging).

When we returned to the Homeopath 3 months later with a food diary that was the size of a book due to be published, we were told to continue on the diet for another 6 months as there had been no change.  We did this.  Eventually Tomato was on the diet for a year and there were not changes to her skin but definitely to our wallet and lifestyle as I was preparing 2 meals - wheat free, dairy free and sugar free for her and "normal" food for her sister Bacon.  It broke my heart to see her at parties only able to eat chips made of maize.  Friends were so kind and many assisted with separate eats especially for her.  Unfortunately this singled her out and she became painfully shy about being different.

I had lost confidence in that Homeopath and I was referred to another "guru" who put her on a skio machine and told me that she was not allergic to wheat, sugar or dairy but avocado (which Tomato never ate) and she pretty much blamed me for the eczema as I only breastfed her for 3 months.  I left with a plethora of Homeopathic remedies which again I administered as instructed with no results.  After that I took her to her paediatrician who prescribed cortisone cream - one for large areas, one for small areas and told me to bath her only in Epimax.  I did this and then phoned the GP for another script for the cream and was told that I shouldn't need to get more so soon, I'm using too much!  I then couldn't find Epimax at Dischem so I phoned the company who makes it and asked if I could use Epimax Junior and the lady was shocked that I wasn't using the Junior one to start with as the adult one even has a warning on it that is should not be used by children.  I was starting to get annoyed.  Everyone I went to told me that the previous advice was wrong.   Surely this was just a simple skin rash?  How come nobody knew how to sort it out?

We then bumbled along trying anything and everything that was suggested.  We have tried every lotion and potion that says it cures eczema.  We have gone from using Rooibos creams, to soaking rooibos tea bags in water and bandaging them onto her skin overnight, doing wet-wrapping (creaming her then wrapping her in wet bandages to enhance absorption of the cream), coal tar, Camomile lotion, you name it, we've tried it.  At the end of 2011 we attended the orientation at Tomato's new school where she would be starting Grade 0.  The children were all encouraged to play with each other on the playground to get to know each other.  After 5 minutes Tomato was screaming and she came running to me with her legs inflamed and itching, she was going wild and there was nothing I could do to calm her down.  Eventually Grandpa grabbed some cucumber off the eats table and rubbed it on her legs and she calmed down enough to get her into the car.  She was beyond embarrassed and was petrified of starting at the new school.  After telling a friend of mine about the incident she referred me to a Dermatologist who had helped her son but I could only get an appointment in a few weeks time.  I needed to take Tomato to the GP for a bladder infection and she took one look at her skin and phoned the Dermatologist and got me an appointment the next day (she agreed that she was the best for childhood eczema).

The Dermatologist was abrupt to say the least.  I told her everything I had tried up to that point including the fact that I thought I should take her for allergy testing.  She hardly looked at Tomato and told me that the eczema is genetic, definitely not diet related and I shouldn't waste any more money on allergy tests and dietary changes.  The only thing I could do was to control the outbreaks (that made sense).  She said it requires huge amounts of effort from the parents but if I followed the routine it would be controllable.  Her prescription was to cream 4 times a day with a cortisone / Epimax Junior mix.  I was prescribed 7 different cortisone creams for different areas of the body for breakouts and 5 cortisone tablets for really bad breakouts and an anti-histamine.  Sounded promising.  (Oh and of course the cortisone ointment prescribed by the GP was "totally wrong as it dries out the skin even more" grrrrr).  So I got home and started the new routine.....

Tomato was now 5 years old. The more I tried to apply cream to her skin the more she screamed.  The days became a blur of fighting, crying and negotiating.  It got to the point where if I reached for the cream, any cream she started to scream and scratch even more out of nervousness.  Bath-time became a nightmare.  She would hide and I would have to drag her out of her hiding places, literally kicking and screaming to put her in the bath.  The entire time she was in the water she would emit blood-curdling screams which made me very angry as I thought she was misbehaving and just didn't want to bath.  The more I tried to reason with her, the more wild she became.  It became the norm to bath her (in the special oils) which stressed her out so she would rip her skin until it bled.  I would try to put on cream, which would burn because the skin was open, so I would then put on special "open skin" cream which the Dermatologist had prescribed, which healed the skin but did nothing for the eczema.  Every night she would get into bed and her mind would wander.  She would start to worry and scratch her skin until it bled again.  She would take all her clothes off because they made her itchy and she would bleed all over her blankets, duvet and sheets.  She would wake up scratching, bleeding and screaming. I became desperate.

One night she didn't want me to put the cream on and I forced her to and she ran around in the nude screaming that she wished she was dead, she was begging God to just let her die now.  I was heartbroken and mentioned it on Facebook.  A friend suggested I contact a relative of hers who could solve my problem as he believed Tomato had a zinc deficiency.  I tried an extensive course of zinc, which tasted great but had no impact.  Every night I would ply her with some new medicine, concoction or remedy that I had found or been told about.  I had Googled it to death and was still coming out with nothing.  One night Tomato woke up screaming like she was being attacked.  She was screaming so loudly that she woke up the whole house.  She kept screaming "take my skin off, take it off!!"  No matter what I did or said she would not calm down.  She begged me to take her to a doctor to make her better, over and over again.  Eventually she fell asleep on my chest sobbing uncontrollably.  I sobbed with her.  The next day I went to see a new GP to try again.  A new Dermatologist was recommended and I was squeezed in as the GP was horrified to see Tomato's condition.  I was not convinced but I was hopeful.  The new Dermatologist was more abrupt than the first one, telling me exactly the same thing. It was as if eczema was just a waste of time and they wanted to see real issues.  I asked if there was any way we could reduce the creaming as she was traumatised by it and he told  me quote "hold her down and cream her, she's only 5, you're the adult here."  Tomato promptly burst into tears and started shaking.  He looked at her and said "You need to stop scratching and put the cream on or you'll always be sore, do you understand?"  I then told him that she is petrified of the creams because they burn on open skin and it was making her more nervous, so he told me quote "well then she needs to see a child psychiatrist because then it is a mental issue and I don't deal with mental issues."  It took everything in me not to slap him!!  Again I got cortisone creams and ointments and tablets.  Again I filled the prescription knowing that the creams would never be used unless by force.  Tomato was silent on the way home.  That night after the usual bath-time screaming match I cuddled her and told her that we need to listen to what the doctor said and her eyes filled with tears and she said "Mommy, nobody understands how sore I am.  Why did God do this to me?  Please don't hold me down, please Mommy please, please don't do it."  It was only  then that I truly realised what I had done to my child by dragging her to all of these so-called experts.  I had eroded her self-confidence, crushed her self-esteem and made her into a nervous wreck. My heart broke for the 100th time.

Later that year Tomato needed to have a tooth filled.  I went to the hospital armed with all the creams and asked the dentist and the anaesthetist if I could cream her while she was "under" they agreed and I got a really good "creaming" in.  The anaesthetist came to see me afterwards and said that I needed to take her to someone who would take hold of her entire health and work with her until all her issues were addressed.  The suggested doctors weren't interested as eczema was not serious enough for them.  Unfortunately the eczema also reduces her immune system.

I then took her to a spiritual healer who came highly recommended.  She suggested numerous remedies which included opening capsules and decanting powders as well as oil capsules and probiotics 30 minutes before breakfast.  Again I followed this to the letter, but after 4 sessions even she told me that she couldn't help Tomato but she did suggest I ask the evil spirits to leave her alone!  She suggested that Tomato and I both do that every night before bed, yes that would definitely help her with her nervousness!  I was so down about this a few months ago that my long-time friend suggested yet another Homeopath  who is "The eczema guru" to which I said "no."  But then I started to feel judged.  Like, don't complain if you don't want help, so I relented and against my better judgement I made an appointment to see him.  Well, it's been a month and again no improvement.  I didn't have any confidence in this man, but a small part of me really hoped that I was wrong.

The worst part of this, is the well-meaning people who stop us and try to give advice, have you tried?.........  As adults we can handle it, but as a child, Tomato wants the ground to open up and swallow her!  Most children think she has chicken pox or some disease and say so very loudly.  Some people have actually given me creams from their bags.  Nothing has worked and to be honest she won't let me near her to put any new creams on.  She is petrified of me and every night she is in agony.  She is so nervous that when I told her that it was her birthday and she's going to be 7, she said "Mommy I'm scared to be 7."  Most children are excited to get older.

Today we went out to play and I saw some Autumn leaves on the ground and I picked them up and threw them over her as a joke.  We all had a ball playing in the leaves....... until we got back into the car and she started to itch......  Her favourite thing in the whole world is to ice cakes and cupcakes.  It is her birthday ring at school tomorrow and she was so sore tonight that she didn't even want to ice her cupcakes.  Again my heart just breaks for her.  I keep wondering if she is just being a drama queen and then this happens and I realise how bad it must hurt for her not to want to make cupcakes.

I have helped a lot of people in my life and am considered somewhat of a self-appointed Life Coach.  I'm a doer, I make things happen and I don't stop until the problem is solved.  If a friend has a problem I tackle it with enthusiasm and leave no stone unturned until they are strong enough to cope without me.  I am there physically and emotionally and am always just a phone call or text away.  I help everyone and anyone but for my little girl, I have failed miserably.  I am not proud, but I have shouted at her, I have screamed and ranted.  I've told her to stop scratching so many times that I've lost count. I have tickled her back night after night to try to distract her from the itching, to allow her to go to sleep, I've begged her to let me cream her, I've walked off in a temper because she won't let me help her.  She is petrified of EVERYTHING and at school she is teased and the kids call her "Blood Girl."  She is now in Grade 1 and I was told by a friend's daughter that she sometimes hides in the bushes alone to get away from the children who are teasing her.  In the past month the swimming teacher has asked us to rather not bring her to swimming as she is traumatised getting into the water.  She said that she thought that "it was behavioural" and that she was "acting up" for me but then she did the same thing when her dad took her, so she probably is just very sore (not sure if I should be offended by that or not!!)  I encouraged Tomato to play netball as she seemed keen and I thought that she may flourish in a team.  I went to her first match because she was so nervous, Grade 1C vs Grade 1A, how cute!  I was so proud.  Then she started getting hot and itchy and she scratched herself raw and was kindly asked to leave the game.  I sobbed on the sidelines for her.


If any of you have read this far, I'm making it public, I am letting this go.  I will NEVER stop looking for ways to improve Tomato's life and skin, but I am letting go of the hatred towards this "disease" that holds my little girl hostage and is slowly stripping away the innocence of her childhood.  I refuse to feel judged by anyone, any more. Those who judge need to walk a mile in my shoes before they comment.  I will NOT give any more time to this imposter that makes me feel helpless and inadequate as a parent, that saddens me and shatters the gentle home environment for little Bacon and Lettuce.  They did not ask for this and I will be strong for them.  I will no longer take horrific photos of her skin to show interested parties.  I will give this subject no more air-time.

Still when I say the word eczema it seems so silly.  How could a little itch create such misery to a child and those around them?  How could that little word change a beautiful, friendly, loving, caring, carefree little girl's personality so drastically?  Every day I think of children who have been burnt and wonder how their mothers are coping.  I think of cancer victims who need to have chemo and how their children are feeling and acting when they know they are going for the next excruciating treatment.  These thoughts are what get me through.  This disease is debilitating but not life-threatening.  I am blessed.

I have decided that this is the year that Tomato is going to grow out of this disease.  I'm going to think that every day, I'm going to say it out loud and I'm going to focus on it every single day.  Please spare a thought and a prayer for Tomato and picture her in your mind with beautiful clear skin.

"Mommy do you have a coin for the wishing well?  I'd really like to ask for nice skin like yours and Bacon"s" - Tomato age 6

Bacon and Tomato

Post Script
Our journey continued. If you'd like an update click on The Eczema Chronicles to see how far we've come.

Other Eczema Blogs
The day I found Dr Richard Aron and our healing journey began