Systemic Lupus Erythematosis (or SLE) is an autoimmune disease where my immune cells attack my own cells. I'm lucky in that I have the "mild" version with crippling arthritis, horrible fatigue and sometimes massive hair loss. The bad versions all pretty much involve failures of every organ in your body. My knees sometimes swell so badly I can't walk much less work. The fatigue is really sucky- on bad days it literally feels like I'm underwater and walking through mud. I have to slather on sunscreen because it can trigger a flare (an arthritic attack and a really dandy body rash!) and I was hospitalized twice. I had a patient not much older than me who had kidney failure, heart problems, was completely bald, and swelling so severe she couldn't wear clothing because it wouldn't fit! (Please God don't ever let that be me!) I've been taking multiple medications since I was diagnosed about 9 years ago, with little to no sucess. But it's not a matter of taking meds to get rid of the pain. . . its how much pain I can take on a daily basis.
For the last year and a half I've been on chemotherapy consisting of IV infusions once a month and they've definately helped! Yesterday was my first infusion of a brand new drug called Benlysta which is the first IV infusion specifically for Lupus. Even though my rheumatologist warned me I wouldn't feel better until at least a month, I'm hoping I'll feel some improvement soon. I have my good days and my bad days, ranging from feeling almost normal to feeling like I was 87 years old. Good days means I can play with my kids at the park. Bad days have me crying in bed at night hoping Hubby doesn't hear.
One of the hardest things about Lupus is its deceptiveness- I don't LOOK sick. I don't have a gross things growing out of my skin (cancer), I don't turn another color (liver disease) or lose a finger (diabetes). I look perfectly fine but on a pain scale I could be off the charts. I tell people at work I have to go home early and I can tell in their gazes that some wonder if I'm really faking it. Having a disease is hard enough without having people judge you for it! That's why I've only told a few friends and family in the past . . . it was a burden but it was my burden to share. Poor hubby has the short end of it. . . he's the type to attack a problem until he fixes it but there's no fixing me. Sometimes I think he feels quite helpless but he deals with it by bullying me into taking care of myself. Alot. There are times when I've told him that his bids to decrease my flares are so stressful it might trigger a new flare! But that's love, I guess. :D
I was in denial for a while when I was first diagnosed (boy howdy was I!) but its hard to deny a fact when its beating the living crap out of you! Now I take better care of myself, eat better and exercise regularly with yoga. Stress is one of my flare triggers so I try to surround myself with calmness and family and friends (which doesn't always go hand in hand!), and attempt to live my life the way I want to live it: with happiness and joy. I am not going to let Lupus define my entire life and hopefully this new therapy will allow me to have it be a very small, inconsequential part of my life.
Lupus can kiss my ass!
Amen sistah!
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