Hypopituitarism

Sorry…Again…

Sorry... ...Again

Hello fellow bloggers/blog readers,

I wonder…will I be able to stick at my blog?…

Sorry…again for not writing many blog posts, some may say they are late but I say ‘A Queen is never late, everyone one else is simply early.’ – The Princess Diaries.

I have been very busy during April, I went on a school trip to a PGL camp in Shropshire over the course of four days, including the weekend. This then meant that I had to get as much homework done before the trip and then I had to catch up on more homework afterwards. As well as this I was absolutely knackered and by the time it turned to May I had only just about recovered.

There was one useful piece of information I thought I should mention from the trip (you might be thinking ‘What?’ but stick with me here). My medicine has a big effect on my blood sugars, about an hour before I am due to take my medication (5:30-6:00) I get sleepy, weak and hungry (my blood sugars drop). I had to wait until we got home to take my medicine, we were due to get back to school around 6:00, that wouldn’t have affected me too badly, unfortunately the coaches were 2 hours late and we didn’t get back to school until 8:40. We weren’t allowed to eat or drink on the coach but I was given special permission and I had to keep eating and sipping an energy drink as I was not staying awake..etc..etc. By the time I had taken my medicine it had gone 9:00.

This had been the first time where I was caught in a situation like this and it really took its toll for the rest of the week. On Tuesday I came home from school, Wednesday I nearly fell asleep during my science test (on which I then got a bad mark), Thursday my teachers kept asking if I was alright, Friday I had a headache, Weekend I slept…a lot.

I also have seemed to be getting headaches when I turn my head in certain positions. Luckily I am going to see my consultant (and a special London doctor) on Thursday this week and we will ask them about this.

I would like to add in that my blog posts will probably be very inconsistent as being a 13 year old school girl I do not have much time for things like writing blog posts. (I want some me time too- you know, for things like, calculating how much money I saved in my birchboxes, brushing my hair, watching YouTube, having personal debates with myself, emptying my busy email inbox- 3 emails 😉

Never stop wondering…

Amelia Xx

P.S have you spotted the change in my blog? 😉

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Little update…

The Best things

Hello fellow bloggers/blog readers,

I wonder…How are Amelia’s ‘transjections’ going…

I am so sorry for missing last Sunday’s post but due to recent events I didn’t have much time on my hands to write one (I was also not very well).

But now I am making a MASSIVE COMEBACK TO BLOGGING BY…writing a blog post…Okay it’s not that miraculous but I hope you enjoy…

So as you may or may not already know, I have been having trouble with my ‘transjections’.  I have already switched to the different style head. We have now had to change site, I used to do it on my thighs and now I have to do it on my stomach. I have been experiencing bad bruising and leakage on the skin. My thighs were just too muscly meaning that the medicine was A, not going in and B, bruising. If you think of muscle as a trampoline then, basically what was happening was that the medicine was bouncing straight off it and back through my skin.

My stomach was not to pleased about this and decided to bruise. We have been trying different techniques each day and today we hope that we have found the right one because this is pretty much the only one that has not bruised (yet).

I have noticed some things about taking growth hormone and they are,

  • About 30 minutes before I have to take my next dose, my blood sugar levels drop and I turn into jelly.
  • About 30 minutes after I have taken it am VERY lively and find it hard to sleep.
  • In general I have more energy.

Anyway I think that concludes this little update and I hope you keep with me along my growth hormone journey!

Never stop wondering…

Amelia Xx

 

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My First Transjection…

shakespeare quotes

Hello fellow bloggers/blog readers,

I wonder…What is a transjection?…

Eek! I have started my medication! A lovely lady called Rachael came to my house the other day and taught me and my parents how to use the Zomajet Vision X (My needle-free medication device). She told us how to look after it, how to make the medicine and how to actually perform the transjection…etc..etc.

A transjection is an injection done without needles but with air pressure. We were shown how to do everything 2-3 times before we properly got the hang of everything.

When loading the Jetpen with the medication we had to make sure that there were no air bubbles, every single time I did this there were no air bubbles but every time my parents did it there were. So, I am officially the air bubble queen! Rachael said that she had never seen someone do it first time without air bubbles- impressed!?

When it came to ‘transjecting’ myself I was terrified as I didn’t know what it would feel like, but then we did it and I was fine, I hardly felt anything. there was a-lot of residue left over on my skin and we were curious so we were told to call Rachael the next day and tell her how that one went and if it was the same scenario then we would have to look into it. The same thing happened, so we were told to change the head to a fresh one for the next day. We did this but still had the same problem.

We have been told to wait for the ‘B’ heads (there are two different types of heads for the Jetpen, most people need the ‘A’ head but some need the ‘B’) hopefully they will work out, fingers crossed! They should be delivered on Tuesday but until then I will have to continue using the ‘A’ head.

So that’s my first transjection story, and the start to my first year of growing.

Never stop wondering…

Amelia Xx

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My Growing Challenge

Amelia O'Toole, Empty Sella Syndrome, Hypopituitarism.

Hello fellow bloggers/blog readers,

For a long time I wondered…what’s up with me?

I was always a regular height, and I always grew the right amount each year, until around 2 years ago. All of a sudden I just kind of stopped growing, gradually my growth rate had slowed down meaning that I was growing less and less each year. It was very apparent because we knew that at that point in time I should have been growing like there was no tomorrow! But I just wasn’t, after about a year of not growing I became very self conscious and extremely anxious about my body. I had started to get a bit larger, and I had always been relatively slim. (My body was saving the energy for growing as fat- to put it simply) I could tell that something was wrong but I didn’t know what, I felt like I was weird and abnormal, everyone else had shot up, including my younger sister.

It wasn’t just me that had noticed that I wasn’t growing, my parents did too and they were a bit worried. After about a year my mum decided to take me to the doctor as well it was getting a bit peculiar as to why I hadn’t grown much. Our local doctor did blood tests then told us to see a paediatric doctor (a doctor who specialises in children). So we did that and I was issued for more tests and an MRI scan on my brain and a bone scan (to see how old my bones were).

We got the results back from the bone scan and the MRI. The bone scan showed that my bones were 11 years old and not 13. The MRI scan result wasn’t too good either, my Pituitary Gland (a gland in your head that controls lots of different hormones which make your body work in different ways) was unusually small and had given up producing hormones that my body needs, meaning that I would have remained the same height and not have grown or developed more at all. I then had to go back to the hospital for more tests. My Pituitary gland was not great. This is what a Pituitary Gland should look like, and here is what mine looks like:

Empty sella syndrome, hypopituitarism

So I have Empty Sella Syndrome and Hypopituitarism. Apparently I was born with it, which is quite rare, and I’ve done well to get as tall as I have! It was confirmed that my Pituitary Gland was not producing 2 important hormones. My blood tests should have been scoring around 7-10 for these hormones, but they were scoring a pathetic 0.1, meaning I’ve run out of what I need. One of these is the growth hormone, so I now have Growth Hormone Deficiency. For the other hormone (I don’t know it’s name) I will have to take tablets everyday for the rest of my life, and I need to keep having tests on different hormones that make sure other things in my body work too.

The growth hormone has to be put into the body- through the skin every day, first to make me grow and then to keep my bones strong. Now the way it has to be done is by injection and I have to do this every day. Being needle phobic I was terrified and felt quite worried when I found this out. (When a needle is put into my body I faint and sometimes throw up) But there was 1 option that didn’t involve needles, it was a special new technology all to do with air pressure. I was relieved, usually the doctor would give you some DVDs to take home and decide what way you want the hormone injected into your body, but knowing how bad I cope with needles, we straight away went for the needless one and I feel very privileged to have been offered this option.

So there you have it, that is my growing challenge that I am going to have to face. I will be updating you every month or so about my growth and how everything is going. So that you know that I am being looked after I want you to know that I will be seeing my consultant every 6 months, my specialist doctor every year and I will have a nurse that can come round my house at any time if I am having problem with the medication or if anything happens she will be someone I can talk to.

It is very hard to explain how it feels to have this condition as it is quite complicated and overwhelming. I don’t think it’s easy to fully understand it unless you have it, and if you do I’d love to talk to you. I have been very self conscious and it is quite hard to open up about but I think talking about it here will help me. But please don’t worry about me as I am sure you have better things to think about. I wanted to write this blog to show that there is a good side to everything and if I share my experiences I can help other people like me to look on the bright side and everything will feel much better.

Oh and just so you know, this isn’t what my blog is all about. I adore make up, fashion, art, photography and drama and will be sharing lots of ideas and experiences that you might enjoy too!

If you are going through anything similar to this, don’t worry, everything will be fine and just let the medicine do its job. Sign up to follow my blog, I am here for you! Xx

Never stop wondering…

Amelia Xx

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