I do normally try with my titles – to think of something funny or interesting or relevant, but this morning having already been up for an hour (it’s now 7.45) and already at the station waiting to fight for a seat on the train; and I just can’t be bothered. I am so tired. And so fatigued. There is a difference between being tired and feeling like this, and I just wish I knew a way to make it go away
Anyway, this is an update about hospital on Friday, sorry for the slow blog been busy LIVING MY LIFE and having the most amazing weekend with my favourite person, who I still can’t believe is crazy enough to want to date me! so hospital was fine, overall. So no big change or not drama, but it was still important to me. we had to leave really early to get to Southampton, and it is such a pain going back, but I really like and trust my specialist so it is worth it!
The appt was standard, get weighed (depressingly fat right now) and have a chat about how I am feeling and hoe it is going etc. I was proud of how I spoke and handled this, because I wanted to be clear that I was both feeling better and not so good; and that j was both happy and unhappy ; and that isn’t always an easy thing, let alone when you are trying to say all this without sounding accusatory! So I said I am feeling a million times better than I was when I was ill, that I am so much more able in my everyday life and that I am getting used to the humira injections. But that I feel I have been thrown in at the deep end and left, that I am getting headaches and the fatigue is whooping my ass, that I am scared abou the side effects of hunira and the lack of monitoring. That I basically want to know if it’s working and then I can gauge if it’s worth continuing. It scares me to have to be only 21 (MY BIRTHDAY IN 5 DAYS) and be pumping a drug into my body which has unknown long term side effects, and not knowing what it could do to me, or when it would happen.
So I think he didn’t get me to start with, but he did get it at the end. He said he had found a department in London he would be happy to transfer me to, which is so amazing; but it just wasn’t something I wanted right now. I mean I do want it but I don’t want to be moved and fall through the cracks and never get the answer to those questions! So I asked to stay, he took a whole set of bloods, testing everything! And I also gave an extra vial to a DNA analysis test which can be linked to crohns and seeing how it works and if there is any link (FYI I think that’s so important, keep trying to help them understand because one day it may help you, but also- don’t you wish someone earlier had done th same to help you? So you should help others and the general understanding of this misunderstood disease)
He also has scheduled a colonoscopy for a month, so that we can see how actual crohns is doing. It makes me sad I am not that surprised and that I will be 22 and having yet another one when most of my friends don’t even know what it is. #lifeofacrohnie
So much going on in the life of just one little person