Excerpts from a book I'll never write

Anyone who’s been to the ER knows there’s always a wait. You sit in those plastic chairs wondering when your names going to be called so you can finally go through those double doors to been seen by a doctor and be treated. When you’re chronically ill before you even get to the hospital you have to make the decision of “is it worth it?” because when you finally get on the other side of those doors you’ll most likely be met with a blank stare. While my medical history is brief, it’s complex. Most doctors and nurses have no idea what a Chiari 1 malformation is despite the fact that it has an occurrence rate of 1 in 1000, and if I stumbled across an ER doctor who knew what an anti-ku antibody was or the fact that it effected the joints and then the lungs, I would fall out of the hospital bed. You see these are the considerations we have to take into play. I have to explain all of this to the doctors while I’m feeling like crap with whatever has decided to flare up. It might be my chiar...

Tonight’s one of those nights where I hate my limits. I’m feeling weak, and I feel like I’m not strong enough to continue this fight. I know these thoughts aren’t good, I know these thoughts are the ones that cause me to get stuck in my head and into the dark places where I can’t get out, but sometimes the light at the end of the tunnel isn’t quite bright enough for me to see hope and I’m allowed my moment of weakness. You see, every now and then when I over do it, when I try and keep up with the people around me and try and be normal, the pay back is too much for my body. I think I can do it, I think for the time being I can be the Old Jordan and that for once in this god damn life things will go my way and I won’t have to face the consequences of being sick, because that’s what I am: sick. Chronically ill or whatever you want to call it. And when the fatigue hits, when I physically can’t move my body out of bed because I’m riddled with pain and my head is going to explode and I want...

Last year I put out a post entitled “365 days” and it outlined what the previous year held and towards the end I stated that I hoped that I would have more healthy days. If you’ve been reading for a while you’ll know that that hasn’t been the case. I wasn’t lucky enough to be granted that wish. My New Years resolution of getting back to the Old Jordan wasn’t fulfilled. I’m not going to post about how this year has been one of doctor’s appointments and tests and hours spent in waiting rooms. If I spoke about that I think we would be here for another 365 days with the amount of time I spent in there this year. No, this year I want to say sorry, sorry and thank you. Firstly, I’m sorry to the people that don’t understand what I’m going through, I barely understand it myself, there are times where I’m faced with so much confusion as tests come back negative again and again, so I can’t imagine what it’s like from an outsiders point of view. I know that for those close to me having to wa...