Hello and good evening (Sunday evening to be exact 6.50 pm!)
Well hats off to you Mr Buckley, your web awareness site is looking mighty fine. I did want to add to the site but I did not know which part to add "My Story" to so I thought i would send it by reply. I have also spoken to my daughter and for personal reasons she does not want anything I write to be connected to her so it will be in story form if that is ok.
This will be the first time I have ever written about it, and it seems so long ago it all started, but I supose you have to start somewhere...... so I will.....mmmmmm.....ok....here goes.
"You just cant take fairy wings on a school camp holiday love".... " they just do not go with green wellies!"
Needless to say when tears well up in those eyes and the bottom lip trembles, dads heart melts and lil princess gets to take them. Haha :)
She says goodbye to us all and off she goes, we worry, brothers miss her and we cannot wait to pick her up from "Camp" which ironically is only in the next county. We get there and straight away we all know that she is not well, she is wrapped up in a blanket and states she has tummy ache, and the teachers advises us that she felt unwell last night and get her to bed when we get home, which we do, then after a couple of days shes back up and running again, back at school and ready to dance her way through life!
At this time our youngest child was still at the getting up in the night stage so i was up and about a lot. I noticed that she was going to the bathroom a bit too often, then going to the bathroom too much, then going to the bathroom all the time. we worried, we thought she was being sick, we tried talking to her and she just kept saying that she just didnt feel well and had tummy ache.
Dad advises a trip to the doctor which we do and doctor looks at her says probably got as virus give medicine and thats that .
Over the next 6 months we had been to the doctor on about 10 occassions. She was 11 at the time, I cannot recall how many times we had to sit and listen to them ask if she was worried about her weight, bearing in mind she was like a little doll she was so tiny, was she taking laxatives? Did she have allergies? Lets do lots of tests....... So for the next two years our lil princess had every allergy test known to man, every change in diet, every vitamin supplement, which is fine....... but that did not stop the average 50 trips to the bathroom daily and not to pass water I might add! It did not help us as a family take it in turns to be up 24 hours at a time to care for her through the night, and do a full time job, and look after the rest of the family. And it did not stop her pain, the cramp, the muscle aches, the weight loss, the tears, the frustration, the desperation, and the fear that no one was able to help her.
IBS the doctor said. I am no fool i knew this was not irratable bowel syndrome, so I took matters into my own hands one night when she was passing blood at 3.00 in the morning, and took her to A&E. I refused to leave until she was assigned a specialist, and it was then that I either broke down, or went mad I cant remember which but I DEMANDED that someone had better look at my daughter now as she was going to die if someone did not do anything.... She was grey in her face, her lips where blue, you could see her hip bones and ribs and spine, she had blisters that would not heal, her hair was falling out............ and I made an excuse to leave the ward , I leant against the wall and i sobbed my heart out. This is where I add is where it all STARTED..........
My daughter is 20 now, the most beautiful girl in the world, and I am not joking, this girl turns heads where ever she goes, to look at her you would never know she has Pan Colitis, ( we finally got a diagnosis of this 2 years ago!!!!- but in fairness the specialists did say she had an ITIS of some sort!!!) Pathetic and ridiculous are two words I think of when i hear what some of them have said over the years. 99% of them did not believe her, which is strange seeing as they read it in a text book, that she visited the bathroom up to 70 times in 24 hours at its worst, and still 40 times at its best. It is not them who have to sit up all night rubbing her legs and arms because oxygen does not get to her muscles because it is trying to keep her heart beating and her brain functioning. They have not been on steriods for the last 7 years, and they have not been told that its highly unlikely that they will never have children. They dont have to plan every route they take to make sure there are facilities nearby . They have not missed out on their social lives, missed opportunities in life because they could not even get up out of bed. They have not cried because they cannot see a future for themselves, and thought it better they were dead than carry on in life like this.
AND may I add they probably have not had the courage and the inner strength to be awake all night but still go to school every day that they were well enough............... and still go to work as she does now.... yes she works..... because she has no choice. Let me explain.
There is soo much more to this story that I would have liked to have told, but i though just a snippet would be best, an OVER VIEW if you like . As a family we put away money for a rainy day, that rainy day happened when our lil girl was unwell. We got no help, we could and still cannot get any form of benefit or allowance, we paid for private care, specialists second opinions, dental treatment, we assigned carers, helpers, all from our own funding. Bills rocketed because of the amount of washing, showering etc, heating as she is very cold all of the time. Food, she has to eat 24-7 in the hope that she can get some nourishment from it before it leave her system, medication......... yes medication has been paid for - steroids, iron injections as she is severly anaemic, she is malnurished, her kidneys, liver and heart are under immense pressure to function. She could not get her current treatment in our area so we have and still do pay for her to live away from our care in an arear where she gets her treatment on the nhs, which is wonderful, but we have to pay for her rent, bills, food, clothing etc care etc, because we do not have an option. it has nearly broken our family, and there have been times when we have wanted to give up.
But we dont give up, because she does not give up........I would glady have her condition for her so that she could live a life designed for her age group, so that she could have goals, future plans etc , and I am sure anyone else who is in similar situations would do that for their children too. This story is real and there is soo much more to it, and believe me is no where near the hard hitting, unbearable parts, its just the tip of a very big, emotional ice berg. God help all who suffer from these awful diseases and conditions, and I do pray for you all who ever you may be, we just need to let the rest of the world know more about the suffering that goes on every day. We do not ask for sympathy understanding would be a god send , but more needs to be done here, its just knowing where to start, or should I say the strength to carry on when you are soo tired just getting by every day of your life.
Thanks for reading.................