Waiting for it.

Hi today this is more a vent then a actual blog post. So I got the actual 'yes you are growth hormone deficient' talk. But what do you know i'm also a little low in Cortisol. Which is even more a blow because thats the one we didn't want for me to be deficient  on because the possible side effects of taking hydrocortisone are long and not good if you have a clotting disorder. It also meant having a emergency medication for cases of emergency. Although the  doctor was saying she would discuss with my doctor. Although when I then went to see my endocrinologist nurse, who is the same lady who run my glugacon test, was lovely and said that because I had gone without it so long without incident and it was only a little low there may not be a need for it or perhaps just to take it in moments of illness. Which then changed to just keeping an eye on it because taking growth hormone can make it go low so keep an eye on it and symptoms to make sure it doesn't go too low. But still the growth hormone replacement therapy is something that is defiantly happening as much as I would prefer it not. I mean it will hopefully make me feel better but still the thought of injecting myself everyday doesn't thrill me. So after our appointment with the doctor we went to talk to my endocrinologist nurse and we went through all the different devices. Which when we first walked in to the room I was secretly a little terrified.  It suddenly became real. Where as before we knew about it but we only really knew what we had researched. Which is not the same as being in the room and your nurse going through the injection procedure. Its a shock to the system.

Then you hear about how sometimes when you start taking growth hormone it gives other deficiencies time to show up. So for the next 9 months I'm going to be under close observation by my doctors and my endocrinologist nurse. Well at least The body shop and the stock shop will be getting lots of business from me. I actually said to my mum, we'll be able to buy the stock shops christmas range. The stock shop has all those kind of things that you know you don't really need but you buy anyway!

Then today I found out someone from my school recently died, which I suppose is part of why my school is different then others. We are faced sometimes with the prospect that some of our classmates aren't going to reach adult hood or grow older. But its still a wake up call and a shock because I know these people, I've seen or met a lot of their families. They don't deserve this. I'm not a fan of social media tributes because, I'm just not. Its an even bitter pill to take because they had hydrocephalus, I mean they also had other medical issues but you realise the knife edge of life you are standing on. I'm not saying because I have hydrocephalus its life threatening because its not when its treated but when its not and its left undetected it can cause serious damage and sometimes death. Not saying that's why they died. It's just something we both shared. If that makes sense. Its times like this that you remember how fragile life is. It reminds of a line in Me Before You where Will's mum is saying how she can see all that he was, all that he is and all that he will never be. She sees his life but knows that it won't happen. You see all that these people could become, the life they would lead and deserve but know that it won't happen. Its part and parcel of my school but it doesn't mean it gets any easier.
These lyrics from Hamilton "The world was enough" kind sum it up in a sense.

" Death doesn’t discriminate
Between the sinners and the saints
It takes and it takes and it takes
History obliterates
In every picture it paints"

Its the waiting that is doing my mind in. I know I am growth hormone deficient, I know about the treatment. But know I'm waiting for the supplies to come to start. It then gives you time to panic. Where as I know that once I start it, I should, hopefully feel so much better. I'm just waiting for that moment. I'm also sick of people telling me I'm brave. I mean I get most people would not stab themselves with a needle everyday. Well I'm sure they would if the situation pushed them to do it. I don't need pity, its not going to change anything. I'm already a charity case when people see me with my long cane or wheelchair. I want people to just understand. I had a minor meltdown the other day in a car park after a group I go to. Because everyone there was able to joke and laugh and their lives were not consumed by the thought of needles and self injecting and side effects and the possibility of other things being low and getting lower by taking growth hormone. It was all too much. I just want people to understand that yes it sucks, no I'm not really okay, I'm getting better. But I'm not scared or its not I don't want to have this treatment. Because I know ultimately that the benefits and how much better I should hopefully feel will out weigh the negative. It will hopefully give me a better quality of life. Its just the waiting for it to start.

But on brighter notes I read somewhere that Hamilton: the musical uk tickets are going on sale in November. Which I am so excited for. I know how in demand Hamilton tickets are so I'm crossing my fingers I get tickets. I've already made plans for it if I get tickets. My mum doesn't want to come to this one so I asked Chanel as I know she loves musicals and is interested in seeing Hamilton. Also I'm getting videos back up on my channel. My costume for the panto arrived, it fits and I even have a petticoat underneath to make the skirt fluffed up. Great description. But I just about fit through the door in it! I'm looking forward to the panto! Also as I plan to have this up Monday, I should have my Orphan Black Convention tickets. I am going with my mum and hopefully a family friend who also likes Orphan Black. I'm so excited for it. I dont want to tempt anything but people and the convention company themselves have said there is no point doing a convention if you don't get Tatiana Maslany, so they must have some hope they can get her! Another guest or two I hope they get is Kevin Hanchard, Maria Doyle Kennedy, Jordan Gavaris can you i
imagine that! Or Kristan Braun! Kathryn Alexandre would be pretty cool as she has pretty important role and I don't think she gets enough credit or recognition for it. Oh and Josh Vokey! Oh I'd love if Josh Vokey went because then I can ask about Denise! I know a lot of people want Tatiana Maslany and so would I, I mean can you imagine that?! I don't think I'd cope knowing she was going. I think I wouldn't be able to contain my excitement. But like I said I would love guests like Josh Vokey and Dylan Bruce and Ari Millen. Imagine if Evelyne Brochu was one of the guests? That would be incredible. I think I'd ask whats her secret to such amazing hair. Actually I'd ask Tatiana Maslany that as well because they both have curly hair and their hair always looks incredible. I need to know their hair secrets. I'm just happy to be going to a convention where everyone loves Orphan Black as much as I do!
Yeah I'll have to start a countdown to the convention.
But if you want to know more about adult growth hormone defieceny and what it affects, here is a pretty good guide that has a pretty good description of what being deficient in it feels like-

Thanks for reading,
hopefully it won't be long until my next post.
Until next time
Sophie