It's hard to write this without feeling whiny. I hate feeling whiny. It reminds me of someone else in my life, who shall remain nameless. But I suppose everyone needs to whine occasionally, so here is my best effort...
I've had it up to here (*hand held high over my head*) with feeling tired and achy all the time. Lupus sucks. And I have a pretty mild case. I can't imagine how life is affected for someone who has heart/kidney/lung/other organ issues.
I wake up to aching joints and muscles, and the pain makes it hard to get out of bed, walk to the bathroom, put on clothes. It hurts to talk in the mornings - Michael now understands my different noises and grunts that replace words...did I mention how wonderful he is? I take an extra long, extra hot shower. (So much for being an environmentalist!) I'm always late to work, but getting there before 9 is difficult...if I wake up earlier, I hurt more and it takes me longer to get ready. (Does that even make sense to someone who doesn't suffer from chronic pain??) I need tons of sleep.
I'm in pain all the time. All. The. Time. But at this point, after 8 years, I've almost become immune to it. I heard someone once describe it as having the radio on for a long time. When you first turn on the radio, you hear it loudly, it's in the foreground...but as you become used to having it play, you don't hear it as much, it becomes part of the background. That's how I feel - my pain has become background noise.
I take immunosuppressants to, well, suppress my immune system. Side effects - my hair is thinning, I have horrible bruising on my legs, higher rate of infections (for me, this seems to manifest itself in bladder infections), I get regular blood tests to monitor the function of my kidneys. Or is it my liver? I can't remember.
I take corticosteroids (no, not the bulking up kind!). Side effect after taking them for an extended period - I have low bone density in my hips and spine, and I'll develop osteoporosis if I take them longer. The catch 22 is that at this point, after taking the steroids for so long, it's hard to ween off of them. I've tried many many many times, but it always throws me into a flare up, and I end up back on the original dose. Another side effect - water retention...my left foot is swollen up to the size of an elephant's foot, which is not only super grody, it's also painful and sometimes hard to get a shoe on.
I've tried taking Boniva to reverse the bone loss, but it makes me throw up so I stopped taking it. Women in the restroom at work kept asking me if I'm pregnant. "Um, no, not so much, but could you get me some water?"
Not to mention...do you know how much all of this costs me?? This might be what pisses me off the most! I could be putting $100 to savings every month, for the past 8 years, plus interest...eek.
I'm thankful for my 2 sisters - one has Crohn's and the other is diabetic. We laugh about our illnesses. I call mine "my funk." Katie keeps me laughing with her poop stories, and comparing stories of people assuming vomiting = knocked up. (I just looked at my texts from Katie, and literally, 99% of them are about poo. God I hope no one ever steals my phone and reads my texts!) Jenny laughs about her "beep-o-meter" (AKA her continuous blood glucose monitor). Renaming stuff is so fun!
That's how you have to deal with it. Laughing. All 3 of us have challenges, but they're not stopping us from living our life, and I'm SO PROUD of us for that. We could pity ourselves, but we're too busy for that - we work full time, have social lives, are in serious relationships. Basically, we rock.