Test results and a change.

Hi I did plan to post a video and blog post this past week but I didn't. Sorry about that. I went on holiday with my family and had a really nice time. Nicer than I thought I would! LOL!
*update it is the 18th September so my holiday was a few weeks ago now and it finally looks like we may be entering autumn/winter weather which I am thrilled about. I don't deal very well in heat. I mean I remember very clearly this time in primary school that I went to school and I had a headache and then I suddenly felt very sick and I couldn't get out of lesson to go to the bathroom quick enough so I was sick over my slope board and desk. All in front of the rest of my class. Although ironically my teacher told me that although I didn't feel well my work was really good. That memory sticks with me. I mean I got to go home early! Also it means that my dr has started up again and we are preparing to put on a panto. I know a christmas panto. We have scripts to learn and dances. I have a song. But its not just any old panto, its a disney all sorts panto so we all are stars there are no background parts. Its going to be really good so I'm hoping to update on here about the panto every so often.

Also I was invited to a whizz kids child in a chair day, which is were you are invited to come to a venue and they talk to you about your needs and things like that and how the piece of the equipment, in my case an electric wheelchair, will help me. Then you take the wheelchair home. Which was an experience because our local train station you can never quite guarantee someone will be there with the ramp to help us off the train which always gets me quite nervous but it was alright as someone was there with the ramp. Also did you know that st pancras station across the road from kings cross has a mac. It was a revelation to me, still waiting for the urban decay in kings cross to open, and I had a bit of a spending spree! Well I didn't get into this am dram group so I had some money to spare! I just wanted to thank everybody at whizz kids because I didn't expect for whizz kids to help me since I'm 18 but because I applied for it before I was 18 thats the loop hole in how I got my chair. But also I never expected the chair I got, its so much more than I expected and its just going to help me so much. I know I would never be able to afford a chair like that on my own, well at least not in the near future. Its amazing what they do and they don't just provide equipment, they help with work placements which I am hopefully going to enquire about. I just want to thank them so much. Here is a link to their web page to learn more about what they do and if they can help you! -
Also I can't remember if I mentioned this but I am speaking at the CVI convention in November so I've also been working on my speech. I'm really looking forward to it and to hear from people who are experts in CVI. But also people who know people and have CVI. But its also another thing to prepare for.
I know I haven't posted anything in awhile. Thats because I have been quite busy in terms of revising for my GCSE's, going to the whizz kids child in a chair in a day, then rehearsing for the panto. Rehearsing for the panto seems to be taking up a lot of my time because as you know I have memory difficulties and so memorising things like this is always going to be difficult so to help myself I rehearse my lines everynight with my brother George who is in the panto as well. I also have page markers to show me where my lines are and how far apart they are. Just added organisation. I also have my *much awaited* hospital appointment to discuss my treatment for growth hormone treatment and I know its not simple and they have to take time to find the right dosage for me so it could mean I have frequent hospital trips for the next year possibly. Writing and preparing my speech for the CVI convention. But I am going to try and be on top of all this and at least post once a month. Fingers crossed*

But as the title suggests I have had my test results. A few weeks ago I had test called a Glugacon test to see if I was growth hormone deficient and well when I got back from my holiday I had a letter that seemed to suggest my test results were in. So I rung the nurses who did the test. They rung back right in the middle of when I was volunteering in my local library for the summer reading challenge. I told my mum that would happen! So I managed to take a break to answer the call. Thanks to the lovely staff at the library. I am officially growth hormone deficient. I have an appointment to go back to see the doctor and to meet the Endocrinologist nurses to discuss treatment and the types of treatment. As the treatment is a daily injection of growth hormone, almost like diabetes because you use a epi pen type device. So its just to talk about things like that. But also it means I have to be careful in what I eat now. Being growth hormone deficit can affect your bodies fat deposits. It can give you high cholesterol. Which when you have a clotting disorder is probably not good. I watched this program this evening called 1 hour to save your life, its an amazing program to see people who should have died come back and survive. But there was this one person who had a heart attack and heart disease. It made me think, that could be me if I am not careful. It sucks to suddenly have to think about that but that is the situation we are in. Thankfully my family are also going to go on this lifestyle change with me. Also taking growth hormone can make it extremely difficult to lose weight, which when I take amytryptillian which makes me gain some weight anyway is difficult, is not easy when life seems to tell you you have to be a certain weight and size. So risk of high cholesterol and difficulty to lost weight. Whoopee! Not! lol

It kind of makes me angry to think my gp was the one to find this. Not any of my specialist doctors, who especially the oncologists knowing the damage brain cancer and its treatment can have on the brain did not discover this. It took my gp referring me for chronic fatigue to another doctor who then did a blood test that signalled that my growth hormone was not right. A simple blood test was all it took. It frustrates me that this could have been dealt with years ago and that it could be second nature to me. It damages your heart, your bones, your mental well being. To think my last few years of school could have been so different.

Apparently one of the symptoms is a sense of doom. Now I may give off the impression of a happy person with no worries. I am exactly the opposite, my psychologist described it as catastrypising. I worry over weird, stupid and uncontrollable things. Irrational things which even though I know they're silly thoughts I can't get rid of them. So to know it could be down to this growth hormone deficiency is eye opening to me and the fact that depression and anxiety are also symptoms also ring true with me. My whole life I have probably almost all the symptoms of the deficieny. My life could be so different.

Theres no guarantee that once I start the treatment that it will change my life completely. Obviously i'm hoping for some improvement but I am not expecting miracles.

Its going to be a complete change, I mean I got all this news one day after we came back from our holiday which was a bit of a feeling of deflation but at the same time relief. Sometimes the feeling of not knowing whats wrong is worse than knowing something is wrong and what it is. Knowing you were right that something wasn't as it should be.

Another symptom that has plagued my life and is part of being growth hormone deficient is fatigue. Fatigue has plagued my life. When I come back from identity I usually go to sleep because I'm knackered. I'm always tired and I have little to no energy. Its probably one of the symptoms that really affects my life. Its actually how I got to this point. My gp, who is probably one the best doctors I've ever had. Like I cannot credit him enough, referred me to the local endocrinologist that specialised in chronic fatigue, which is what they thought I had. The doctor we saw then did blood tests which revealed a low growth hormone and then my gp referred us to my main hospital for the right testing to definitively say I'm growth hormone deficient and so we started on this journey.

So thats where we are at and I won't really know more until I have my next appointment in the next week. I'm kind of looking forward to it but at the same time not because then it will be official.

But yeah.

In other news there may finally be a orphan black uk convention and I cannot contain my excitement. Also by monday Tatiana should, if all is right in the world, be an emmy winner! I mean she should win because her acting is amazing. I don't have many inspirations but she is one them. Especially as I want to be an actress and I would love to be as good an actress as she is. The layers to her characters are just unrivalled. But imagine if the convention goes ahead and Tatiana goes. I cannot cope with that idea. I think I'd be a bumbling mess. I mean I'd be a bumbling mess whoever goes!

Thank you for reading,
hopefully the next video/blogpost shouldn't be a long wait for,
until next time
Sophie