Not to be dramatic (but to be completely dramatic) sometimes being chronically ill makes me so fucking angry. And the things that I usually shrug off just start to fester. Instead of denying it -or lashing out at someone about something they said years ago- I’ve decided to use this pent up energy to educate.
TL;DR version of #lupus: instead of attacking germs, the immune system attacks healthy cells in the body.
Which healthy cells? Whichever ones it wants. It manifests differently in every patient- which is why it’s so hard to diagnose. Coupled with the fact that there’s no 100% accurate test for it, it tends to become a we’ve-tested-for-everything-else diagnosis. Cue Hugh Laurie.
Just because someone doesn’t have the “telltale signs of lupus,” doesn’t mean they don’t have it. I almost never have a butterfly rash on my face. What I do have is #RA, Raynaud's syndrome, #chronicfatigue syndrome, migraines, decreased kidney function, weight gain, brain fog, depression.
How do you treat it? Literally shutting down my immune system. Treatment is immunosuppressants like Plaquenil (only drug made for lupus since 1948) and chemo. Plus the drugs to treat the satellite diseases and problems it caused. And the drugs to treat the side effects of those drugs.
Is there a cure? No. Like cancer, it can go into remission, but it’s never truly gone. I will be suppressing my immune system in one way or another the rest of my life.
If you don’t have an immune system, how do you keep from getting sick? Exactly. Now you understand my yearly flu shot rants. Your germs could kill me.
You can die from lupus? Lupus doesn’t kill you technically. The havoc it wrecks in your body does. Most people with lupus will die from some kind of complication from the disease - even if it’s much later on in life. We can live long lives, but there are so many factors that can swing that timeline one way or another. Hence my extreme hatred toward anti-vaxxers.
And that’s your lupus lesson for today. Stayed tuned for the next time I have roid rage and use long-winded social posts as a way to keep myself from screaming at people who never seem to understand the seriousness of my situation.