Tomorrow (and mish mash)

At 9 I have a dentist appointment for 2 fillings. The first 2 I have ever had...I am sooo scared!!
Then at 11:45 I have a doctors appointment with my GP because they have found a parasite in my stomach called Blastocystis. This parasite is very hard to eliminate as it hides in the intestinal mucus and sticks and holds on very hard to your intestinal membranes. Hopefully this will go away and relieve some of my pains but the doctors believe that this is not the main cause of my pain.


Today I spent the day with my Uncle and my 2 adorable cousins, A is 5 and N is 2. The oldest is a boy and he loves to wrestle with me!! He is in prep and his school is beside mine. The youngest a girl, she is loving and kisses everyone and is just so cute. She loves to dance and has just learnt my name. I love the pair of them and just can't spend enough time with them.


I love babies and children and I love spending time with young ones. When I am older I want to have 4 children, ideally 2 girls and 2 boys but I don't really mind as long as I have at least 1 girl. I love to look at all the cute baby clothes and I love love love looking at prams!! Weird I know but I love it. I have always dreamt of being a mother and often think about what type of mother I would be and how cute my children could be. 


I think the thought of my future including my future children has kept me going through this illness. I know I can't give up because I long so bad for my future children. I can't wait to be a mother and hopefully a great one at that. 


I hope every one has a great week!!


Charlotte;) 

Report Cards

Well I received my mid year end of semester report card yesterday.

I knew my report was getting posted on Thursday but I didn't know if I would receive it on Friday or on Monday. As we were getting closer to my house I saw a big yellow envelope sticking out of m letter box, I instantly knew it was my report card as my school always sends it in a yellow envelope, and my stomach dropped. I knew I couldn't change the marks written on it but I was sooo anxious. I know I know, it is only year 9 but my marks are very important to me.

I opened it up and store at it for a few seconds and then it hit me...it was not what I was hoping for. My school has a system that if you get 5 out of a possible 8 A's you receive a green academic award, if you get 6 then it's a red academic award and if you get 7 or 8 it's a blue and they count A- A or A+ all as A's. The past 2 semesters of year 8 I received 2 green awards. My semester 2 results were from my term 3 exams as I missed all of the exams in term 4.

I was aiming for  a Blue award but realistically I was hoping for a red award. I did NOT want another green (this may sound a bit snobby but I expect very highly of myself).

So I open up my report and here are my marks:
Religious Education A- (not really sure why as I have never received an A- all semester only A's but anyway)
Advanced Mathematics B+ (this is probably what I am most upset with as I was sitting on an A+ all of term 1 and then didn't do so well with my term 2 exam-it makes sense I'm just not very happy)
English B+
Enterprise Education A-
Home Economics A
Multimedia Studies A+
Science A-
Social Science B

So not to bad but not what I was hoping for!! So another green badge for me I guess.
To be honest I cried and cried and cried last night, I was so disappointed in myself. I tried my absolute hardest and I don't think I could have tried anymore or put in any more work in but I was still soooo upset.

I have been told by my doctors not to expect my marks to stay the same as they were and that I should be happy with anything above a C which is average but I don't want to let my illness hold me back and I don't want to use it as an excuse. I just wanted a red or blue award soooo bad.

I guess going from 1 day absent in semester 1 of last year to 15 days absent, 3 late arrivals and 7 early departures from school semester 1 this year and maintaining my marks is not to bad and I know I should be happy with what I have got and I know I can't change what has happened but I just never know if I can or will be happy with it.

I guess I would be a lot more upset if I got noting, so I think I am pleased with a green badge but just not happy with it. And I've got something to work towards next semester I guess.

Charlotte:)

Why

I have started this blog so I can keep a dairy of what has happened over the past months and so one day I can look back at this and remember all of the small moments in my life that I would have otherwise forgotten about.

I also started this so that other people can find this and maybe it will help them. Maybe they are going through something similar or maybe they know of someone who is going through something similar.

This whole journey I have never felt alone as I have had my mother there with me the WHOLE time, never has she left my side or never has she not supported me, I have had my father as well, getting me (decent) food while I was in hospital, looking after me when my mum needed a break and caring for my brothers so my mum could be with me. They have both been amazing!! So too have my extended family, friends and teachers. They have all done sooo much for me, more then I ever expected BUT I have always longed for a person to have been through this and someone who willing to share there experiences with me, listen to me cry and whinge (but I've got to give credit to my mum cause she is pretty good at this) and know what it feels like (she doesn't really now that but she does the best she can), tell me what has worked for them and what hasn't, tell me that there is hope that one day I will be my normal self and just have someone who I can share everything with and know that they know what it all feels like.

I have to admit that my mum ticks nearly all of those boxes and I tell her just about EVERYTHING but she hasn't been through this, she can't fully understand what it is like and she can't tell me what has worked or what hasn't worked, she can't tell me what she has gone through with an illness similar to mine, and she will never know what it really feels like to go through this.

I hope for my blog to do this for at least one person, I hope that one person who has or is suffering from something similar to me will gain something from my blog. Whether it be; a test to take, a doctor to see, an ear to cry to or to just feel like they are not alone. I hope to do this.

I want something positive to come from my illness for someone else. I want to get a message out that you are not alone.

If you know anyone or are suffering from something similar to me PLEASE let me know, I'd be more than happy to talk to you or them.

If you have been through something like this then please, please, please let me know anything that has helped. I would be so happy with any little piece of information.

Charlotte;)

No early mornings for me

Well so far the holidays have been great!! I really haven't done much but I'm loving staying up late and sleeping in til after 10 in the morning!! It's been pretty cold here and sleeping in with my electric blanket is pure bliss!! I think I could do it everyday if I was allowed to!!

Yesterday I went shopping with my mum but I didn't find anything I liked!! Today apart from a doctors appointment I'm not doing anything!! Tomorrow I'm hoping to make this cake
http://iammommy.typepad.com/i_am_baker/2010/02/heart-cake-tutorial.html
It is amazing!! My mother doesn't think I'll be able to do it but after a few practices I think I'll be fine. I want to make it for my friends birthday in about 3 weeks so I have plenty of time to practice. I'll post pictures as soon as I have done it!!

Then on Thursday night 3 of my friends are coming over for a sleep over and they are going to test the cake for me as well!! Don't worry its not the one who I'm actually making it for!! And then On Friday we are all going to a water park for the day!! Some may think were crazy but the weather man says its going to be sunny and they have hot tubs there as well as water slides and the like!!

So the holidays are treating me well and I never want them to end!!
How have your holidays been? What have you been doing??

Charlotte;)

Doctors

So after being sick for probably 1 month my mum decided to start counting the doctors I saw as kind of a joke. I thought that would be a great idea and kept up a good count until about March this year. I think I am now up to about 50 different doctors over the past 7 and a half months.

I remember seeing:
Multiple GP's
Paediatrician
Paediatric Surgeon
Many Paediatric Gastroenterologist
Paediatric Endocrinologist
General doctors at the hospital
Persistent Pain Doctor
That's all I can remember for now!!

Speaking of doctors I have an appointment at the hospital with the persistent pain doctors this afternoon. Hopefully they can help, I have seen them before and they put me on some new medication called Gapapentin which has made no major change to my pain but I'm always willing to try anything!!

I also had an appointment at the physio yesterday. I really like her and she is trying to get me back to water polo by the end of this year!! I can't wait to see what happens!! I have all of these exercises to do which is great cause I haven't done any thing since last October! Luckily I haven't lost all of my fitness and the exercises are not to hard.

Can anyone recommend any other doctors that could help!?!

Charlotte;)

Me

Just a little bit about me!!
Ok so far you know that I have something wrong with my stomach but there is a lot more to me!!

For starters I love to sew and craft, just like my mother and grandmother.
I love Grey's Anatomy, I have season 1 to 6 on DVD and have watched the whole series about 5 times.
After I finish school I want to be a neurologist and I have known this since I was 2.
I live with my brother who is 12, lets call him D, my mother and father. We also have 1 cat and 6 chickens.
I love love love to travel!! My family and I have been to America, Italy, New Zealand, Mexico, Vietnam, Fiji, Vanuatu, Singapore, Japan and we have also travelled all around Australia.
I love my friends and family more than anything in the world.
I love to play sport, unfortunately now that I am sick I haven't been able to play any sport since October last year. I used to play Hockey and Water polo and I was also a swimmer.

I can't think of anything else but please ask me any questions you like!!

Charlotte;)

Tests tests tests and more tests

So far I have had:
2 Endoscopy's
1 Colonoscopy
2 Ultrasounds
1 CT scan
What seems like 1657 blood tests
564 Urine and feaces tests

All tests have come back clear expect for one endoscopy showing villi damage, one feaces test showing pin worms and all of the blood tests have come back showing that the message from my brain to my thyroid in my neck is non existent but there is normal levels of thyroxine in my body. Oh and there is something wrong with my liver and I cannot digest proteins properly.

Is there anyone who has anything like this and has had a helpful test that maybe I should have had??
Is there anything anyone can recommend to me that may help??
Anything at all would be helpful!!

Charlotte;)

Bring on the holidays

YAY, finally exams are over, term 2 is over, semester 1 is over and it's holidays!! 3 lovely, amazing and relaxing weeks that I have been looking forward to for what seems like forever!!

No more cold, early mornings, no more homework or assignments and no more worrying if I'm sick and I can't go to school for THREE whole weeks!!

I could scream, dance and jump around like a five year old I'm so excited!!

I love school but I just really need a break. I can't wait to go shopping, to the movies and just to be able to chill with friends.

I just can't wait!!!

Where I left of..

Well I don't remember the exact details but I remember staying in hospital that night and until about 2am Friday morning I was sent home. Friday I was back at the hospital at 8am I remember getting admitted to hospital and then I remember having an ultrasound that day as the doctors again suspected that I had something wrong with my appendix or had ovarian cysts. Friday night was one of the worst nights I can ever remember and I ended up having fentanyl after having many doses of morphine.

The ultrasound showed nothing but I still had stomach pain so they kept me in over the weekend and said they would re-access me on Monday. By then I had had a blood, urine and feaces test. They all came back on Monday, I think the urine showed nothing, the blood showed elevated white blood cells (I think) and the feaces showed pin worms. The doctor believed that this is what was causing my pains and  gave me some medications to treat them and sent me home on Tuesday. I had no syptoms of worms but we had had enough of the hospital so we went home anyway.

I woke up the Wednesday morning vomiting, my mum rang the hospital and they said to bring me up there straight away as this was a new symptom. It was actually just a side effect of the worming tablet that they had forgot to mention and I was told to go home and rest.

The rest of that week I don't think anything major happened but the following Monday I still had the constant stomach pains so we went back to the GP to see what we should do next. He told us to see a paediatrician who sent me to a paediatric  gastric surgeon who sent me for a CT scan.

The CT scan showed nothing and so he sent me back into hospital for my first endoscopy. This as now November and I had had this pain for about 3 weeks. Never in that WHOLE 3 weeks did I ever not have stomach pain, it was CONSTANT. I was now under the care of a paediatric gastroenterologist, lets call her Dr. E she is still my doctor today.

The endoscopy showed villi damage but it was not correspondent with a celiac. I was put on a gluten and lactose free diet. By this stage I had not eaten for about 8 weeks and had lost 10kg. I never felt hungry and I never felt full and I still don't. After this diet change I could eat more but my appetite has never returned and I still do not eat very much.

So now we are at about January this year, the story is way more detailed but I really don't remember the exact details. They will probably come to me and I will share them once I remember them.

In January Dr. E decided it was time for another endoscopy and this time a colonoscopy as well. These two procedures were scheduled for late February and were definitely an experience to remember...more on that in another post.

These both showed that I was Lactose intolerant but that was about all I think. Dr E decided I had IBS and that was that. She said over time I would recover but I would have this for the rest of my life. We were not happy with this diagnosis so we went to another doctor but he also did not know what it was but didn't think it was IBS.

Since then I have been sent to the 'Chronic Pain Team' who have put me on a new medication and have sent me to a physiotherapist.

This is pretty much where I am up to now in a nutshell. I will try to add more details here and there as I go.

Have a great weekend:)

From the beginning

Well hello there!! My name is Charlotte, I'm 14 and I'm from Australia.

My story starts last October. To be precise the 27th. I woke up with stomach pains. I had never had these pains before nor had I ever had any type of stomach pain before and I had no idea what had caused them. My mum said to just have the day of school and rest and I would be well by the morning.
The next morning came and they were still there, just around my belly button. They hadn't moved and weren't getting any better. My mum decided it was time to see a doctor and so of we went to the GP.

The GP said she could not see anything that could be causing them and the only thing she could up with was something wrong with my appendix. She though this was unlikely as I was not guarding. I was told that if they were to get worse I would need to go to the hospital. Never in a million years did we think this would happen!! She also said I needed to start eating and drinking again as I hadn't eaten since Wednesday and it was now Thursday afternoon.

That evening I was screaming, shaking and crying in pain. Mum decided that it was time to go to hospital and so there we were waiting in the hospital at 11pm Thursday night.

This is were it all really begins...but more on that tomorrow!!