It is now coming up on nine years since I was diagnosed with this idiotic autoimmune disease called Lupus. Due to a lot of recent conversations and ruminations, I have decided to write this… whatever it will be. I know that a lot of people know I have some kind of illness going on, but are perhaps uncomfortable asking questions about it. Truthfully I don’t mind telling people about it, but I don’t bring it up often, because it can be a bit of an awkward and depressing topic. So here you are, all who wish to read on:
a little bit about my life.
Lupus, as I mentioned before, is an autoimmune disease. Basically, people with any kind of autoimmune thing are allergic to themselves, to varying degrees.
In my personal case, without hefty medication, I am deathly allergic to myself. My immune system thinks every organ, blood vessel, nerve, joint, and soft tissue in my body is some kind of invading force and tries to kill it off.
I started to get really odd, random symptoms in 2006. Digestive issues, chills, joint pains. Nothing went together, and nothing had any reason I could come up with, so I didn’t visit a doctor. On my 25th birthday in 2007, my right knee was so swollen and painful that I could barely walk. But I had no health insurance (I won’t get started on the US “healthcare system”) – so I dealt with it and I kept going to work.
Eventually, one day, I was in so much pain all over that I began to get really really scared. So I went to my doctor, and they thought I might have pancreatitis and a kidney infection. I was sent home with codeine pills and strong antibiotics. A weekend of this did nothing – and by my follow up appointment that Monday, my kidneys had stopped functioning and I had put on ten pounds of poisoned water weight. I was sent immediately to the renal ward at Providence Hospital in Portland, placed in critical condition, and poked full of holes. My veins were collapsed, and as someone who hates syringes, I don’t know how I stayed awake through all the attempts at insertion of an IV and hourly blood tests.
Without a ton of detail: I was tested for three days by an amazing team of doctors. I was subjected to a kidney biopsy during which I had to be awake AND an active participant (holding my breath for proper alignment of organs during multiple CAT scans). I was put on massive amounts of drugs which completely killed my immune system, made me shake uncontrollably, and caused me to sweat out all the liquids that my kidneys had stopped processing. They diagnosed me with Systemic Lupus Erythematosus with Nephritis, made sure I was starting to recover, gave me prescriptions for thousands of dollars in medications (one of which would eventually make me near suicidal), and sent me home.
Over the years, I have learned a lot about the disease and my particular version of it.
There is no cure for lupus, but it is treatable. Usually the treatments are less than ideal… but they work for the most part, and that’s what we have to remember.
And this is the main reason for what I’m typing out.
Nine years on, I have no life threatening symptoms, but I still struggle daily. I saw this inspiring image on Tumblr today, and it made me give a rueful little laugh – because, for me, this is just not true.
I have come to realise that this is my whole life. I’m not wholly complaining about it. I am lucky to be here still, to enjoy all the music I love, to see all the wonderful things in the world that I have seen, and most of all to meet so many amazing, kind, wonderful people. That includes those of you whom I have only “met” online.
However, back to that GIF… part of my recovery has been coming to terms with the fact that I will always be in some amount of pain. I will always have to take medication that screws with my digestion and sometimes makes me feel like I’m going to puke. My eyes will always look tired and sunken in. I will always be a little bit shaky, have weird fluctuations in body temperature, have random joint pains. My headaches will always return in varying degrees of horrible. There’s no way to stop my light sensitivity, and that also messes with my art making. So I pretty much live on a curve. I’m never what most people consider good. Sometimes I’m good – for me. Some days, I’m feeling terrible. And the more terrible I feel physically, and the longer it goes on, the more it affects my mood. This is why I occasionally post a vaguebook about needing my encouraging tattoos. I don’t hold the people who wrote on my arms personally responsible… the tattoed words are just happy reminders that I am more than this bullshit immune problem, more than my pain – and that I have very good things in my life. Especially the wonderful people that I am happy to call friends. (family counts in there too!)…also the tattoos are lyrics from really good songs. ;)
I’m running out of steam here, so I guess I have rambled enough. This gets across what I meant to say, anyway. Thanks for reading. Feel free to send me a message if you have any questions – I really don’t mind talking about it.
And, above all, thank you for being a friend.