Is this an anniversary?

May the Fourth. Star Wars day. And also the day we found the little bugger circulating my body and causing havoc amongst my joints. It’s been a year of medication, hospitalisations, and multiple tests. My body’s been pushed to the limits, physically, mentally, and emotionally. Medications were given from the get go: a malaria drug, then steroids, then chemo, then more steroids, then an immunosuppression usually used after organ transplants. New types of tests were run: lung functions every few months, bone density scans, dexa nuclear brain scan, blood tests every month to monitor liver function and inflammation levels. It’s been a year, and so much has changed, and yet so little hasn’t.

I’m still sick. That fact will most likely never change. There were times in this past year where I had to use a wheelchair to get out of the house, and an almost purchase of one because I had gotten so bad. That was certainly a shock to the system. There was a buy of a cane that I do use for when my joints need that extra support and I know I’m going to be walking a lot. The stares on those days are always fun to deal with. That’s another thing I have had to deal with; stares from the public. When your face swells up and the rest of your body stays the same (or goes down because you can’t keep on weight) your proportions go a bit out of whack and you do notice the double takes and longer glances. Then when I’m out with a cane or the times I’ve been in a chair you can always see the gears churning in peoples head. They try to look away but you can see them wondering what’s going on, and I’ve tried to put the doubt out of my head about what they’re thinking, but it’s always there. Maybe that’s what being sick has taught me: not to worry what other people think.

I had to learn how to not worry if someone heard me throwing up in a public bathroom because the nausea had gone beyond the point of bearable. Or how to handle getting nose bleeds in public. That’s been rather recent and I’m still learning the finer details in managing that situation but I’m proud to say I’ve never gotten blood on any of my favourite shirts. The harsh glares from the elderly when I claim a chair because standing becomes too tiring is always off putting, but when you feel like you’re going to pass out sometimes you just have to take that seat. Downing half a lemonade in almost one gulp because my blood sugar has dropped and my hands have started to shake and I’ve gone pale certainly warrants a few stares, but the feeling of not being in control of your body is something I hate. These are all things, all situations, I’ve been in on more than one occasion in this past year, and will probably be in again because being sick goes beyond the doctors room and hospital walls.

In five days, May 9^th, I have another immunologist appointment. It’s a follow up from my hospital admission and the course of IV steroids that I underwent. I’ve also been on this new medication, mycophenolate, for two months and that’s usually when it’s suspected to take effect. So how do I feel? My knees still hurt but they seem to have built up endurance, whether this is from the medication or having been on the farm I don’t know, but what I do know is that while they do hurt like hell I can seem to go on a bit longer. My fatigue is still there in crazy amounts and I do still need naps, a draw back to coming off steroids. My brain fog has cleared little bit. For those that don’t understand this; brain fog is essentially what it sounds like, a foggy feeling to the brain where I struggle to think, forget words and what I’m saying in the middle of sentences and forming coherent thoughts. Some days are worse than others, and when my fatigue is bad my brain fog is usually bad, but then there are days where my mind is active and I want to get out and do things but I just physically feel unable to, which is the most frustrating thing in the world because I feel like my body is betraying me! So I take it day by day, because that’s how my body is currently letting me live. It’s not how I pictured things, but since discovering this anti-ku antibody, the rare and seemingly unknown pest who likes to wreck chaos within me, that’s just how I’ve had to approach life.