I Hate Diabetes!!

Today I am broken!

Today Abbey asked me the question....'why me?'

It's one of those..'I've had enough days!'

most of the time, days are good, but when it's bad it feels like i just want the ground to open up and swallow me.  

I hate Diabetes because my child has to draw blood from her tiny fingers at least 6 times a day EVERYDAY.

I hate Diabetes because my child has to be attached to a machine to keep her alive, all day EVERYDAY.

I hate when I wake up and the first thing I feel is fear, wondering if my child has passed away overnight.

I hate site change days because it causes my child anxiety and pain.

I hate that we have to weigh and measure everything that she eats, all day EVERYDAY.

I hate that we can never be spontanious, I would love to be able to just pick up the keys and leave the house without having to pack the hypo kit, all day, EVERYDAY.

I hate  it when I see blue candles on my facebook, it means someones child has lost their battle with this disease.

I hate diabetes because it has robbed my child of her childhood.  

Truth is....I do not know why we have been given this awful disease, we just have to try to manage it the best way we can for now.   






   

**My Many Faces

This mornings bgl was 19.6 with 0.6 ketones!!!  I would usually give Abbey a shot and a correction but she had a bad shot yesterday that brought tears so I'm not going to put her through that again we will just go with the correction, anyway I let her lay in my bed and go back to sleep. Since I was wide awake in reflection, I felt a blog coming on!!

I'm not afraid to say that I'm in a pretty dark place at the moment, so If you are a newly diagnosed parent you may not want to read any further..some of you may relate to me and others may not, but this is my blog...

I wonder if 2 years should be long enough to know everything a parent should know about their childs chronic disease. I remember being 3 weeks out of hospital after diagnosis and having to call the emergency line for advice and the nurse asked if we were newly diagnosed! I said  'Oh no it's been nearly 4 weeks now' she gave a little chuckle, I couldn't understand what  that chuckle was for??

I still cannot understand why I can't get it right!

When you have a broken arm, you get it fixed!

When you are very ill you have medicine that comes with instructions!

Why can't I get this right??

Why can't I think like a pancreas!  Damn it ! I've even read the book!

Before our diagnosis, I had no idea whatsoever about Type 1 Diabetes. I actually thought the doctors would just fix Abbey up and things would be right again...
This was the face of denial. I remember thinking... 'things could be worse'.

I find it bothersome when people ask me why I can't get Abbey's bgls in control. We can never perfectly mimic the human pancreas all we can do is try to manage it the best we can.
When you see my blue candle it means another friend's child has lost their fight with this disease.
This is the face of anger.

How can this happen??

Loss is the hardest thing to live with!   when I lost my mother I thought I would die right along with her, the same happened when I lost my father....Now I live with a different sense of loss! the loss of having a perfectly healthy child one day to this new life of uncertainty .
This is the face of sadness.

  

A Sudden Realization....(22nd of May 2011)

>Shopping.....I used to love shopping, I could spend an hour in a chemist. One day I spent the whole day in Target..I was only going in there to get some socks for the girls and before I knew it, it was time to pick them up.
I don't shop that much any more!! 
I have thought about it a few times - as to why I don't go that much anymore but I could never find the answer.
Anyhow, a couple of days ago I saw a link that one my friends posted and I felt as though it had been written for me ..It was about parents of type 1 diabetes children.
The expert stated that on' looking into the parents, sleep deprived eye's , she could see the tears just behind the eye's.
It was after reading this. I realized that I started feeling this way. 
I think people can see the sadness and sleep deprevation in my eyes >> come to think of it- they even mention that I look tired'."I'm actually afraid that they might think I'm not coping well"...so it's best to just stay home and keep myself occupied.
Well!!! I'm not doing this any longer..I'm going back to the shops as the same whole person I was!  and yes I probably do have sleep deprived eyes with tears just behind them but I am not broken yet it's just hard some day's.....

August 2010...pump start day

9:30 AM ..Abbey was given her Medronic "Veo" pump..we had a pretty full induction day and 2 days later we were pumping.
We are definately loving the pump, but I feel the need to let people know that you must be prepared for the commitment that pumping requires.
for example we have to do Bgl readings every 2 to 3 hours and if things are changing  - like going through puberty, growth spurts, exercise, emotional times then you need to do Bgls at 12am and also at
3am . Because there is no long term insulin on board when pumping it is a case of the 'here and now' approach.
The reason for such tight monitoring  is because without long term insulin on board Abbey has a window of about 3 hours before things can take a bad turn...Ketones can start to develop quickly and untreated can lead to coma.
well my first experience with that was when we did a sight change at 8pm ...haha now I know better, it is not a good idea to do site changes at night......more to follow

July 2010....To pump or not to pump

At this stage, Abbey has been diagnosed  for 10 months and after full time research and also seeing her HbA1c was 8.4 ..I felt there was room for improvement so that was our conversations for about 2 months prior to July.
By May 2010 Abbey decided she wanted to pump because she loves to sleep in and she loves a variety of different foods which was hard to do with having shots.
I know pumping is not for everyone but for us it felt so right, and somehow I think you just know when the time is right.
SSoo I approached our endo and she said that the doctor, the social worker and the dietitian would have to approve first..
after waiting one month for some response I received "THE" letter saying They approve Abbeys application.
Yay!!! how happy do you think I was.
I was determined that even though my daughter was given this awful disease... I would work as hard as I have to make her life as normal as possible without complications.
Well what a road ahead...

Abbey stayed in hospital for one week and we all got to learn what we had to do to keep her alive....
Her pancreas had basically died - I thought all those sort of things only happen with old age, not to a healthy 9 year old.
On admittance she was very ill, she had ketoacidosis and they had to come and check her on the hour,every hour.
One thing I will always .... remember that made me realise what I really had to deal with was :- On the fourth day in hospital, I asked the nurse if I could take Abbey down to the cafe on the 4th floor, as I was about to go she say's...Havn't you forgotten something like Abbeys hypo kit...'well I was only going down to the next floor ' and the nurse say's "what if the elevator fails and Abbey has a low ...
WOW just got to learn that we can never go anywhere without her hypo kit.
I must admit by the 5th day I was thinking that there was no way I would feel safe enough to take Abbey home...what if something happened.
It's amazing though how a parent can suddenly gain inner strength  because on the 7th day I was well and truley ready to go home.
Our hospital stay was very pleasant considering the circumstances and all the doctors and nurses were so wonderful ...thanks Princess Margaret Hospital

Pre diagnose days of Abbey Ellis (8 yrs old)

When I look back on the things that lead up to Abbey's illness, I realised that she was unwell for quite a long period of time. She was diagnosed with 'exercise induced asthma", she didn't have any wheezing but she just couldn't breath properly.

Then she came down with a virus which was treated with antibiotics...she was well for a couple of weeks, then the virus came back, this persisted for over 3 months and took about 4 different lots of antibiotics. All the while she was not the same active little girl she used to be...she started sleeping a lot more and was always tired. I felt there was something really wrong . Abbey was always thirsty and would drink lots of water and go to the toilet all the time.

The few days before diagnosis she wet the bed, which she hadn't done since she was 2 years old.

The actual day of diagnosis I was taking her to school, she had rugged herself up saying that she was freezing. It was actually a pleasant temperature.
The next time I looked in the mirror, she was asleep, I knew she was sick again!
In the afternoon I took her back to the doctors and he was about  to give her more antibiotics,as we were about to leave, Abbey casually tells him, she wet the bed..so he sent us to the toilet for a urine sample.
When he returned he said to me "we have a big problem" I think it is diabetes.
"you need to take her straight to Princess Margaret Hospital, I will call and let them know you are coming.
I did not know anything about diabetes but I  knew it didn't sound good.
That evening the 16/09/2oo9... Abbey was diagnosed - Type 1 Diabetes.