Through a mothers eyes...

So as the title suggests this post is through my mums eyes..what follows is a poem she wrote a few days after i was diagnosed so almost 25 years ago, she has kept this aging piece of paper in a folder locked away...untill now

My Prayer!

Oh god in heaven, what am i to do?

Please! dont take my baby, im begging of you

Save her the suffering and pain ahead

Leave her alone, take me instead

Kerry my darlin' whats happening to you

God name your price I'll bargain with you

If you really are out there, prove it to me

stop all this pain and misery

How can you allow her to suffer this way

Only to take her away some day

From me her mother, her next of kin

What did i do? did i sin?

If you feel i should suffer in some way

Then fair enough i will pay

But not like this, thats not right

To make me face the unbeatable fight

The daily treatment, the drugs the tests

The constant worry the lack of rest

Its all to hard for us to bear

prove to me you really care

Find  a treatment, make it alright

Tell me a cure is in sight

Im sorry if asking for help is wrong

but if your going to help, don't leave it to long 

time isn't something we cam spare

Please god in heaven hear my prayer!

Spoken from the heart of a young women diagnosed with a terminally sick child, a women who was younger than i am now when she was told this news, from a women who is my hero, my strength, my mentor, my friend...my mother! <3

 

Everest

I have picked up a cold which rapidly headed to my chest causing havoc! i decided to start IVS pronto as i knew if it was left for just a few days it would have got so much worse, ending with me in hospital Well 7 days in to my course my port decided to stop working, another spanner in the works! So off i trek to london to have it looked at. When i arrived i was feeling absolutely terrible i couldnt walk i felt very dizzy like i was going to pass out its was like my legs forgot how to function and i had such deep pain in my chest.
Dad drove me up there as i felt to groggy so he got a wheelchair and wheeled me to the ward where i met my nurse who's face told me how terrible i looked she very quickly checked my oxygen levels and my heart rate...my heart rate was 138, and my oxygen was 83% Awful!! my oxygen are usually ok sitting around the 94% mark but over the last few months they have been getting slightly lower but have never been that low! and as for my heart rate that was beating at a pace of someone who has just ran for miles, when i only walked up 7 steps to the hospital entrance....those 7 steps seem to be my Everest now!

The Dr's want me to go in hospital next weekfor oxygen monitoring to see if i need to use oxygen at home, but im hoping that wont be necessary and the low was just this infection.
I think i know deep down i should not be stopping IVS today, or going to bath at the weekend, and should be going in to hospital but i feel i spend so much time there and CF rules so many aspects of my life that i dont want it to ruin the one thing i have been looking forward to for months. I will feel just as ill in hospital as i would in bath, if not worse as ill be couped up feeling depressed, so in the grand scheme of things i dont think with-holding treatment for a few days will be to bad. I could be wrong but whats the worse that can happen??....How many things can i let CF ruin? How long should i stay stubborn and determined for?
The answer to that is simple...I will continue doing that until my body physically will not let me push.

I know my health is extremely poor at the moment and i am beginning to accept the fact its not going to get much better. My lung function is sitting stubborn in the 30's  and has done for almost a year now, The length of time between hospital admissions is less, i now use a wheelchair on long journeys and day to day jobs are nigh on an impossibility. I cant bend down to put the washing on, or stand up for to long without feeling weak so dont cook much anymore, even bathing myself is something that is getting increasingly difficult, leaving me feeling breathless and in pain. Housework takes twice as long as i have to constantly sit down to catch my breath. But im still trying to make the best of my life as it is and i feel i need this break away, its been a really crap 18 months and i have been in hospital more than i have been at home.
My CF Team are fantastic and understand that all of there patients still need to have some kind of life through ill health, so they did not push me to go in to hospital any sooner than next week, i think they know that mentally its draining so they encourage you to have fun when you can.
Another blip i have to overcome, another 7 steps to walk up, another mountain to climb, my very own Everest......

My Sisters Keeper

I read a book about 4 years ago called my sisters keeper, im sure many of you know about it as it was later turned in to a film, for those who haven't heres a brief summery....

A young child was diagnosed with with leukemia, the best chance of survival was to find an absolute perfect match to provide her with cord blood, bone marrow and eventually kidneys. The perfect match would have been for the parents to have a 'designed baby' a test tube baby who would provide their existing child with life.
The film mainly based on Anna, the girl who was designed for her sister. She explained that although her sister was primarily the sick one, she too suffered by having blood drawn, bone marrow and kidney transplants for the sake of her sister, she too lived a life of hospital visits because of her sister.

This really got me thinking about my sister and her life having to deal with CF. Although she does not 'suffer' with Cystic Fibrosis and true i do not rely on her in anyway physically to keep me alive, i did and still do require an awful lot of strength and understanding from her mentally, and  from a very young age too, before she even knew what was happening to her little sister.

Hospital rooms, corridors, nurses and doctors, for her too was 'normal' Ambulance men in the night, my mum and dads worried and stressed faces as they tried to nurse me. Her life was often as disrupted as mine. If my hospital bag was packed at 3am so was hers, accept hers was being being packed for another overnight stay at my nans house.
Long line, cannula, x-ray, lung function and psuedomonous was as clear in her vocabulary at the age of 5 as was the words toys, playschool and sweets.
She was there at times when my veins needed to accessed, she would try to hold me down with my mum and even come away with fat lips and bleeding noses as i kicked out in vain to avoid the doctors needles, she was a little adult at 7, old before her time having witnessed things to young. But as i say this was 'normal' for us, just another day in the Robinson household..

I will never know at what age she really knew what Cf was and why what was happening to me was actually happening. I do however remember her telling me off for breathing to loudly or coughing if she was listening to her Michael Jackson tapes :D

Im not sure if i will ever be forgiven for telling you what i am about to as it brings my mum to tears everytime it is spoken about, but she once told me and sara of a time i was extremely poorly laying on the living room floor with a temprature of 41 screaming in pain, coughing myself in to a frenzy of heaving and vomiting. She sat on the floor with me and preyed to god to help her, to help me. I was only young, just a few months old, sara still in nappies come up to my mums side in tears, she was told to be quiet and go and sit down, which she did.
 After my mum had settled me, how long it took i dont know, she turned to see sara had taken off her own wet nappy left it on the floor and curled up on the sofa and went to sleep. To this day my mum will say she has never got over what had happened and sobbed at the thought of sara being sent away, wet cold and tired. Did sara know at that age my mums attention was split? did she know i was ill? did she feel it was best to stay away?How did she feel being shipped off to my nans house? If i was in hospital my mum stayed with me, my dad worked full time so sara was always to stay with my nan. Did she feel abadonned? neglected? unloved? or did she truly in her soul know what was going on in her surroundings?

Sara is a beautiful soul, we call her a witch as she is very in tune with what is going on, she knows me, how i feel... what i feel! There have been times in recent years when she has been at work and been overwelmed with a panicing feeling to later find out at that exact time on that exact day i was having an attack and was rushed to hospital, There is such a thing as twin intuition, well can there be sister intuition? I truly believe with me and sara there is.

A few years ago i was wheeled out of theatre after having a metal plate inserted in to my chest..(a portacafe) still groggy from anesthetic, hadn't yet opened my eyes and high on pain killers, i managed to open my mouth and mutter the "tell sara to stop crying" I was later told that there is no way i could have seen her as she was behind me as my bed was being wheeled back to my room, i just knew she was crying without opening my eyes, or even being fully alert!

My mum is a strong believer in destiny, path lines, past lives and karma, she has often told her she is on this earth, in this life to care for me, it was her destiny..so if that being true was CF destined for me, was sara destined to be a well person who is caught up in illness...Her life is this way because of my destiny, have i kept her from living a normal life. Have i made her question our parents love and attention for her or does she know its just our destiny's

Was i destined to be my sisters keeper? 

 Anna was designed and destined to save her sister from cancer... was sara made to save me in a way no doctor can? by providing humor love and understanding. By being my rock and my inspiration, my sister and my best friend...

Is she to 'her sisters keeper'??? ...........

xxxxxxxxxxxxx

CF Week

First off blogger has a new layout so if this doesn't come out right i apolagise.....

So as the title suggests i am about to talk about 'CF week'
It is a week, every year that the CF trust and patients try to spread awareness of CF
Admittedly this week, this year i have done very little to spread awareness due to my own health problems so instead i thought i would write a short blog (and hopefully add some links if i can work this new layout) for you to have a read of yourselves.

First of all i would like to paste a status here that a fellow 'cf-er' wrote, i have nothing to add to her words, it speaks for itself...

So, today is the last day of the UK CF Week, and everyone has been posting quite a bit about it. I'm going to make this my last post for the week, people may ignore this, people may read it. It's a stark and shocking way of putting it, but that's life. Also if it isn't a trendy or media friendly disease like cancer people generally don't give a shit. Truth.

Cystic Fibrosis: I could give you the ......medical ...definition of what it is, but that surely doesn't do justice to the realities of it all. Cystic Fibrosis is a disease that slowly destroys your body one day at a time. It causes constant pain and fatigue. Hours worth of treatments and over 30 pills... not every week, but every single day. Your lungs ache and struggle to do, what seems to others, the "simple" process of breathing.
Toxic antibiotics that improve, but yet also destroy your body. Doctors, nurses, and respiratory therapists are considered family.
We reach 18 years old. We're not celebrating because we are now considered a legal adult, we are celebrating because we are alive. Our bodies are starved from proper nutrients and oxygen. Kidneys fail. Livers fail. Hearts fail. Lungs fail. Bodies fail. People die.
Kids who never got the chance to see high school, teenagers who were holding on to hopefully make it until graduation, and adults who waited endless hours, but never received that call.
Think this is too harsh? Welcome to the life of thousands of people, who despite all of this, keep an immense amount of laughter and positivity in their lives. Welcome to life of thousands of people who deserve a cure!

Secondly i would like to show you a video the CF trust has made. Kerry Thorpe is in the video, 'a friend' i have never met, only spoke online to for about a year, somebody who truly does have the signature strength that many CF patients have, and wonderful person who i hope and prey gets listed for her double lung transplant soon.....
http://www.youtube.com/watch?v=milvvnDBYfo&feature=share

Next i want to leave a link to purchase CF wristbands, by ordering a band for £2 you will be helping The CF Trust in vital research as all proceeds go straight to The Trust, If you could spare £2  please please order one :)
http://cf-breathe-easy.webs.com/

I will leave this blog here for now....
I just wanted to say, that once again, my reasoning behind this blog is to raise awareness of all aspects of CF, its problems, the facts, the truths, the laughs or embarrassment it can often bring....so please do share my blog to your own profiles for people to read and share.

Thankyou to all that do already read my blog, and i hope you will continue to do so...
And together lets make CF stand for 'Cure Found'
:)
xxx