The First Time I… Write a post about the first time you did something. What was it? What was it like? What did you learn from it?
Along with this blog, I keep two diaries. One is my social diary – it has my work schedule and my Humira injection dates, deliveries, nights out, lunch dates, coffee dates, plans I make each week – and the other tracks my medical symptoms and emotional ‘range’. I keep notes on alot of things, is what I should really say.
I started Humira (the Big H) on December 7th. But it was in late September – weeks after my official diagnosis that my IBD nurse and GI discussed ‘biological treatment’ with me. They came round to see me again after the morning round to discuss my options. I was bloody scared. I thought it was the some what inevitable conversation about surgery and when it would necessary to cut me open. Alas, I was wrong; they wanted to discuss further treatment options. I got the ‘speech’ about a bottom up approach to Crohn’s – to treat the symptoms as they come and when they worsen use stronger (and more risky) treatment to get me better. I was at that time on only Pred and Pentasa. Pretty basic start up medication for Crohn’s. But they decided applying for Humira funding was necessary. This was September 27th. Two days later, it was approved.
It seems crazy to think that my allocated money for a years supply of Humira was approved almost two months before I actually began it. I had several talks with the IBD nurse about Humira over the coming days, weeks and next admission, about what was different about it, how it worked, what I would expected to feel on it, how long it would work for. By the time they decided that Humira was next option was when I was admitted with complicated from my Aza days.
For some thing that is so ‘normal’ to me now, I was terrified about the needle. About injecting myself. About the cost of my medication. About the implications of taking it. About the lack of immune system I would have. I finally realised during that final admission how sick I was and how sick I could get, in pretty much an instant. I was scared, so scared about Humira. I still am, in a small way, because it does reduce my system to almost nothing. It make me vulnerable to things I never used to get. I finally understood how bad my guts were. Are. Will always be. They are under control today as I sit here and type to you, but who’s to say they won’t be? Humira is part of my routine now, but it never used to be. I’m not on any tablets these days, but if I was, the actual physicality of them would remind me of my condition. Humira is every 14 days. It is over and done with in a minute and then I go back to whatever I was doing. But. That injection is specially made for severe Crohn’s. Severe Crohn’s Disease. And I take it. There is it in a nutshell. The link. The facts.
So, every time I see those boxes of H in the fridge on the third shelf, I think back to September 2011 and remind myself of exactly why they are sitting there. Because a department in Good Hope recommended them. They know they kept me healthy. End of. But that first discussion… it still haunts me. But for the better, I think.