THE LONG AND ROCKY ROAD

Oh gosh, its been so long since I wrote anything, so long since I felt like writing anything.  So much has happened in my life, I'm almost lost for words and where to begin.   I guess things changed in me when I took on two very nice Indian boarders in my house.

Their names David and Vinney.  I learnt so much from them,they helped me become what I call Free. With warm encouragement, support and with complete non-judgemental hearts they empowered me to take off my wigs and hats (except I need a hat when its cold lol), to be brave and go out in public with my bald head. They promised we would all walk down the street together, they would walk with me!  Anyways, it turned out, then I got sick in January this year and had emergency appendix surgery on my birthday..eeek.  David and Vinney came to visit me in hospital and we walked the hospital corridor together (instead of the main street) me with my bald head, and oh yes I have tattoos on my head...I decided, and its a typical Gaelene thing, that if people were going to stare at me I would give them something worthwhile to stare at lol.  As you can see, I have been brave enough to upload some photos for you all to see the new me.  Of course I still wear my wigs to work and it still feels good to dress up nicely and put some hair on, but I have the freedom of choice now, that's huge!
I just know that the right people come into our lives at the right times, I can never thank David and Vinney enough, thank you for walking with me.  I love them to pieces and now call them my sons, they are a part of my life forever.

Well, get ready for the Boom!  I feel like I only just got "Free" and Boom, the next challenge begins, and its a biggie!  I have now been diagnosed with a Corneal Disease in my eyes called Pellucid Marginal Degeneration.  It is rare (wow I don't do things in halves right?).  I have practically lost the sight in my right eye, I only see distortion.  My glasses aren't working for me anymore, they cant be strengthened anymore and to be honest I am fed up with the public health system and the waiting waiting waiting.  While I wait the disease progresses.  Deep down inside I fear going Blind, yep there you are I said it, I fear going blind.  Oh gosh, it is daunting to know that the life long suffering of Chronic Eczema is the precursor to my eye disease. Did you know that as your skin is so are the corneas of your eyes ?   It's a long and rocky road for my eyesight now, but I know I don't walk it alone, and I'm so full of love and gratefulness for my loved ones, the family and friends I have that walk, have walked and continue to walk this rocky road with me.  Big hugs everyone, I will keep you updated on the progress on eye treatments and surgerys etc I require when I know more. 
I sure can say that it makes hair feel so less important ! 
Big hugs everyone,   Gaelene xx

Carry on

Why is it I always feel like blogging when I feel sad.  I should be able to write when I'm overflowing with Joy as well.  But hah I seem to have lost my Joy at the moment.  Don't know where it has fucked off to quite honestly.   I seem to be faced with a new challenge each day, be it I have a broken heart, which doesn't help matters.  So I better cheer up and tell my Joy it can come back now cos I've had enough sulking.  It's time to move on  and get on with things i.e. my life !  Oh yes, that's right I do have one.

I don't know where I get it from, but when I get down and out I get very determined, so I got up the ladder with my moon boot on cos I have a fractured foot, with a bottle of wine, and I painted the hallway in my house.  One moment cursing, the next moment crying lol.  It's really just sheer grit and determination to not stay down, to get back up, to fight back, to carry on, to bounce back, and that's my way.  I injure myself a lot lol.

Does anyone else do that sort of shit ?

So due to all the emotional stress, THE Eczema (I'm not calling it MY Eczema anymore),  rares its ugly head, and I start scratching. Extra measures are required to clear it up.  First of all kick the anxiety away and calm down. Second of all, watch my diet !  Third of all, I NEED a ticket to Rarotonga where I don't know anyone and I am forced to relax with Pina Coladas on the beach with a book.

I am so happy to be a Healthcare Assistant to the Elderly, I love it.  They lift my spirits, put a smile on my face, help me to keep a sense of humour, and I stop thinking about me.  Don't we get so tired of thinking of ourselves sometimes ?  I do !  Ok for me to write this I must be getting my Joy back.  YAY!  Just get all the way back now.

Assumptions... What?

I recently got sick and landed in hospital, and it takes a lot to lay me out.  Anyway shall I tell you the story ?...ok then.  It has a funny side !  

I had the runs (diarrhea) for two days, and was vomiting, couldn't even keep water down.  On the 3rd day I started pooing blood. Oh dear, best I go to the Doctor, a dear friend took me. Two stool samples later some anti-nausea meds, pain relief and I went home, on the way delivering the stool samples to the hospital as my doctor instructed. At this point I will say thank you with all my heart to the extra special friends I am graced with in my life.  About 10pm  that night the pain, cramps in my stomach became too much to bear.  And I'm tough right...another dear friend took me to A&E for urgent attention, she had stuck around my place long enough for me to make the call, knowing how stubborn I am lol.  At this stage please note that I wore a scarf not a wig. The Doctor arrives looks at me and asks "Is there any other medical condition we should know about."  I replied very casually "No, just Eczema and Alopecia." In goes the IV needle, Morphine and wow the relief is beyond words. Five litres of IV fluids were pumped into me that night, I was completely dry!  I had no trouble sleeping that night, I was put in a single room way down the end of the ward, and was given a commode in my room in case I was infectious. I was Nil By Mouth, more Morphine I was feeling better. 

Touch wood I have not stayed overnight in a hospital for many many years, and I must say I found the standard of care rather poor.  Well, ok then, it sucked !  The next morning, well what the heck has happened to common sense.  The surgeon is on his rounds, I'm waiting for my turn.  I had been offered cups of tea which I had to decline I was Nil By Mouth ( no sign in my room to say so.)  Around 11am a nurse comes to my room, oh dear the surgeon had forgotten about me, and is now in surgery for the rest of the day "ok well when is he coming back I said and while you are here could you please empty my commode." Kindof reluctantly she emptied it.  A locum doctor came to see me, tells me they have lost my stool samples !  Oh my God, where are my shit samples !  Floating around the hospital somewhere ? The young doctor said he would get the surgeon to see me asap,I must remain Nil By Mouth in case the surgeon wants to stick a camera up my bum, and while looking at me he asked "Is there any other medical condition we should know about ?"  I said "No just Eczema and Alopecia."  

By this time I haven't eaten for 4 days and I'm really hungry, guess what, they brought me lunch!I had to say I'm not allowed to eat that.  "Oh well" the lady said "I will just leave it here for you for later."  and places it on the table right beside me.  No one has been to offer me a wash or shower.  You would think someone recently shitting blood might like a wash yeah ?  So, I rolled my IV over to the basin, had a lovely wash then thought "Fuck it" and I ate the mushroom soup !  The surgeon came, I said "You are too late I ate the mushroom soup."  He was going to keep me another night and instead said "If you can keep the mushroom soup down you can go home."   I said Yay! and with sheer grit and determination I kept that mushroom soup down. A nurse came and took the IV needle out of my arm, and asked me "When did you have your Chemo" I'm horrified at the assumption and replied "I HAVE ALOPECIA." she went very red in the face. Paper work done I couldn't wait to get out of the place, I'm put off work for a week cos I might be infectious,  The nurse comes in empties the commode and says I can use the real toilet now.  I'm thinking hold on a minute I might be infectious!, so much for infection control.  My friend picked me up, as we were walking out, knowing my stool samples were still lost, there were 4 nurses sitting behind the desk...What ! On the way home we picked up my prescription and chicken noodle soup, that's all I wanted Chicken noodle soup.  I had been home about 10 minutes and the phone rang, it is some other nurse asking me "Gaelene, did I take your IV needle out." Oh for goodness sake, I should of said " No you didn't".  Then it dawned on me that two Doctors had also assumed I had cancer when they asked if I had any other medical condition.  It turns out I had Gastroenteritis, after a week at home resting, soup, jelly, I'm all good now. 

I mean, really, is this the standard of care right across the country or is it only where I live ? What has become of Nurses,(and Doctors) are they nurses in it for the money, or is their heart in it.  It used to be a Nurse was a Nurse she had a passion to care for people, a certain sensitivity,  and we were proud of them.  I'm not so sure anymore. Is hospital a safe place to be ? I think the thing that pissed me off the most was not losing my stool samples, or being forgotten, but the assumption that I had cancer because I was wearing my scarf ! 

How Dare You !  and oh yeah they found my samples the next day.

    

Seeds of Wisdom

It's been too long since I wrote, my own fault can't blame anyone else but me !  I'm using a bigger font cos my eyesight is not so good these days.  I have good control over my skin most of the time, have moments when it rears it's ugly head. Anyway I have been painting the inside of my house.  I had quite a dilemma choosing colours for my kitchen cupboards.  I started with 3 test pots of quite dark colours, then one morning I realised I was choosing colours my mother would of liked.  I was aghast !  So back to the paint shop I went and said to the lady "My mother is dead and gone and I am still trying to piss her off, give me bright colours please,"  Hence my kitchen cupboards are now bright orange/red and I love it ! Makes me smile every day.  
But it also made me realise that 'Learned Behaviour' still lurks within me. I recall my mother always telling me I had no sense of colour coordination well guess what mother YES I DO !
I love her to pieces but hey Gaelene is on her journey to know who she is !  

She said "No man would ever love me the way I look" well guess what she was WRONG again.  Oh dear, poor mother.  I did inherit some good qualities from her though I must say. I think we inherit good qualities from all sorts of people like seeds being planted.
I had the occasion to call my Aunty Una (my Dad's only living sister), she is 87.  We talked about living a relaxed life, I asked "how does one live a relaxed life cos I suck at it", she replied "Gardening, it teaches you the cycle of life."  
Wow zap bang seed planted, don't you just love it when our elders come up with such wisdom.  Seeds of wisdom let's plant them, sprinkle them far and wide and watch them grow !

I say Love it is a Flower and You it's only Seed.  

Personal Care Plan

All of the Elderly at my work place have a Personal Care Plan.  This is a plan of how to care for you if you become unable to care for yourself.  It's a good idea to have one I think, especially if you happen to have some special needs going on.

My darling friend and self adopted sister made it her business to know my care plan.  I'm sad to say she is moving away to Auckland.to live.  So, I'm thinking it is a good idea to write my care plan down and also to show another darling friend how to do certain jobs.  These things have to include, what time to shower me, what soap to use (and there is only one, that's sunlight soap), what creme's to use on my skin (there are two), and what area's to put them and how often, how to wash, dry and maintain my wigs !  Wow I sound like hard work ! But, these are all important things that some-one needs to know in the case of anything happening to me and I can't do it myself.

I mean, I hope I am blessed with old age and can be a proud old lady with my dignity in tact, but it is also my observation and training that as we age tasks become increasingly difficult. It takes more time and patience just to do one's own personal care.  So, it is a good idea to learn some patience now if we haven't already, and another reason to have a care plan in place.

Working with the Elderly has taught me great patience, humbleness, gratefulness, oh I could write a list as long as my arm of the rewards.  I highly recommend the job.  I have always been one to try not to think too far ahead, but life is short and I realise the road is sometimes long. I am at an age where the future must be thought about...oh dear, here's a thought, my friends will be old with me. Oh I can see it now, walking sticks, walking frames, artificial aids.  What a crack up, we will be taking care of each other. Laughing out Loud now !

I remember well and old man whose land I had my housebus parked on at Mahia.  It was 1993, the year I lost all my hair.  I was broken, he was diabetic and had lost limbs.  One day he said to me "What are you worried about, each night I go to bed I must take off my left leg, my right foot, take my teeth out, my hearing aids out, my glasses off, and in the morning I must put them all back on."
That gave me food for thought.

Inevitable Changes

Life is such a big lesson to be learnt, but I honestly think Gaelene is very close to knowing who Gaelene is !  So much Learned Behaviour to sort through, a lifetime of it.  Yes, Learned Behaviour, this is what we learn from other people i.e our parents, siblings, friends, partners.   It is not us !  Well it is not Me anyway.  I have discovered that happiness is being happy with myself, my own choices and decisions, my own behaviour, and I must not expect anyone else to bend over backwards to make me happy.  I am fine, and all the rest follows.  Expectations, hah !

Change and I don't get along very well.  I dislike change !  But, there is no getting away from it when people around me make changes in their lives, it affects my life too. For instance, a dear friend moving away, another new manager at work means more change etc. Nothing seems to stay the same.
Just like learning the difference between behaviour I learned and Gaelene's behaviour !  It brings change.  This effort still has not contributed to me growing my hair back but I suppose it must be good for my own personal development.  I shall continue, it is interesting.

My skin is good, I still have moments but generally it is amazing.  After nine months of The Eczema Treatment Plan my skin has a new texture, softer, not as dry.  Lots of laughs I'm not drying up anymore !  But seriously, in Dr Jo's book meaning of Eczema is "To erupt, to boil over"  So, not so many eruptions in my life and the boil over temperature has decreased.

Wow, I have neglected to blog for quite some time, I have missed it.

HONEY BEES

A friend and work colleague told me "You get more bees with honey than you do with vinegar."

Well, let's just say I did that and I got more bees, but, then the honey has to be up to scratch yeah ?
I realise I have more work to do on myself.  I say more, because there is always something.
I appear to be really getting on top of the Eczema, I say "the" because I refuse to own it anymore it's not mine.  Yep 54 years and finally I have some joy where my skin is concerned !

Now the Hair, or lack of it, is of far greater concern to me than the skin, and it always has been. I have lost all my hair twice now...
for it to grow back a third time would seem impossible, I have not had any for 22 years, and who grows there hair back not twice but three times hah?  
It is by far a deeper problem to be fixed.
Oh, one gets tired of digging deep.  

Added Stress

Oh  Goodness me I haven't been here for 2 months how bad is that.  I can only say it has been a whirlwind couple of months.  Been to Hamilton to welcome my beautiful niece home from Scotland, been several times to Hawkes Bay, gardening lots, going to work, re-carpeting the 3 bedrooms in my house and so much more.  Such is life, it is busy !

I must confess during some of these times, I have gone off my diet and come to know what foods harm my skin.  Before I would not of known the difference so I suppose the cheating is not all bad.
So I know for sure Chocolate, Tomatoes, too much of the wrong milk, cakes and biscuits, pies, pizzas, omg they are shit ! When I eat this stuff, Oh how I itch, itch and itch, and scratch, scratch, scratch.  And to top it all off Stress adds it's ugly head to the issue.

Too much stress, too many thoughts, what to do with them all I say.  Thoughts, feelings, emotions, sometimes I wish I had none, the sifting is all too hard.  Oh dear I guess I have been nursing a broken heart, it's a long story maybe I will tell it in my next blog, I might be needing your opinion.

I don't know, what is the game of love ? If it's a game then I'm not very good at it.  All I want is to be myself.  I'm 54 years old, why should I play games, just say it like it is, that's how I am.  And when I want to say it and I can't well the consequences are ........
Gaelene (who doesn't drink) drinks three quarters of a bottle of wine, is awake till 4am in the morning with Led Zeppelin playing Dazed and Confused, Stairway to Heaven, and sorting out all my clothes, then crying my heart out before going to bed lol.  Oh my God !

On the plus side I have discovered that a glass of wine in the evening is very relaxing !

I am home to stay for a while I don't plan on going anywhere anytime soon so I am back on my Eczema Diet and Treatment Plan and my skin is behaving itself again.  Just gotta deal with the heart.

Talk soon , nite everyone

Seven Days .... What ?

Sorry I haven't blogged for a while, I have been on holiday.  Had a week in Australia to attend a very important wedding.  Adam Taylor got married, I was his nanny when he was little.  It was such an honour to be there at his wedding and I felt so proud.

Anyway, carrying on my story, I got home from Auckland with my 'Eczema Treatment Plan' and got started.  Part of the plan is food avoidance.  The biggies are Dairy food, Chocolate, Citrus fruits, Tomatoes, Soy, Peanuts and a few other simple things.  Oh my gosh, I am such a lazy eater, I hate cooking, but determined to stick to the plan, off I went to the Supermarket to shop for my new foods. Well, I spent four hours just reading the ingredients of everything.  And, did you know that most of all the packaged and processed foods have Soy in them, all the snack bars have peanuts or chocolate in them.  I could go on and on.

My shopping basket consisted of - Pita bread and Wraps (it's dairy free), Rice bubbles, Cornflakes, A2 Milk, Olivani, Bananas, Pears, Apples, Oaty Snack Bars, Chicken, Meat, Vegetables (but no pumpkin).  For something sweet I brought Golden Crumpets (dairy Free) and I put Golden syrup on them...Yum !  Not happy that I have to cook and prepare food, but I must do it!

The treatment began - Use Cetaphil or Aveeno Body Wash or Sunlight Bath Soap in the shower. Apply Aveeno Cream to skin first and then Dr Joe's Eczema cream on top two times per day. This all takes time when it is my whole body I must cover in two kinds of cream.  But, I am used to that. Stick to the food avoidance diet and take my anti-histamines twice daily. It's not hard and it's not rocket science, rather quite simple to do.

Seven days after I began the Plan, here I was sitting watching TV of an evening and suddenly I realised I'm not itchy !  What ?  I'm not itchy !  How can that be ?  54 years of my life, my parents and I tried everything there was to try and help me and suddenly after seven days I have no itch. Such a weird feeling.  A feeling of "What do I do now"  It was almost like I just lost a best friend.
I am amazed at the improvement in my skin in such a short period of time.  Incredible, who would of thought ?

I'm going to get real brave now and include some before and after pics, here we go -

Eyes Before Treatment Plan

Eye's after three weeks of Treatment

Before

After...only scars left

Hands Before

Hands After

No Coincidence

Have you ever felt Led, like guided through life, you know like when sometimes things happen that turn the page in our lives, and it feels like it's meant to be.  What is that, is it Coincidence ?  Well I figure I have proven to myself that it is not Coincidence.  Things just sometimes add up, make sense. My Dad called it common sense !

So recently on the Maori TV was Dr Joe Williams.  In the interview they showed before and after photos of babies, children, adults being helped.  Eczema disappearing after seven days treatment.
You can go to his page on facebook. https://www.facebook.com/pages/Eczema-Book-by-Dr-Joe-Williams/1384461888516661  Dr Joe has 50 years Eczema Research up his sleeve and has documented it all in this book.  I am gobsmacked to find there are about 13 different types of Eczema...NOT JUST ONE ! as a Dermatologist would believe.

So I purchased the book, I read it three times.  I knew , I knew that I knew, I had to go and see the Doctor. Then, I booked my flights to Auckland to see Dr Joe Williams. Got grab a seat deals so it was no biggy. My niece ran us around in her car, bless her.  He is at the Mt Wellington Integrative Health Clinic.  It is an open clinic, he is there Monday, Wednesday and Friday 9am - 5pm.  You go and wait your turn.  I had my darling sister Leanne, and my precious niece Karin with me.  We turn up there at 9am by 10am the clinic is full of people needing help.  Just before lunchtime they call my name. Holy crap it's my turn.

My sister came with me into his room.  He is so gentle and caring, I can tell he really cares.  I become a little more at ease.  So he takes a look at my skin and says "you poor dear."  He asked me "what tests have you had" I replied "None."  He was appalled at this and wanted to know why not.
I had to tell him that dermatologists have told me tests would be a waste of time it would be like looking for a needle in a haystack. So what did Dr Joe do ? ... he took the tests.  A skin scraping and a blood test.  He asked me if my mother ever told me I had cradle cap as a baby.  Well yes she did, she said it began around my scalp and then.covered my whole body.  He told me "Well my dear that is where your problem began."  OMG, 54 years to discover it started as cradle cap.  Well, like I said some things are meant to be, I will not question why it has taken 54 years, I shall just get on with things. He explained to me what type of Eczema I have. Personally signed my copy of his book for me.and THEN, he said " You will have no itch in seven days."  I burst into tears because I don't know life without itching.

He took me into another room to take photo's of my skin, most of my body.  My sister and my niece came in there with me.
So I'm trying to get my top off and my feckin hair is coming off as well
LOL so I just took my hair off threw it at my sister asking her to hold it for a while. The poor lady taking the photo's got a little fright, but carried on.  Hilarious I thought.  I got big hugs from all the staff and Dr Joe, I left there with his Eczema Care Treatment Plan (which is in the back of his book), and purchased the creams and body washes and soaps I need (with some help from my sister).

The last thing Dr Joe said was "We are going to call you Joylene."