So, so what? I am a rockstar!
Right when it seemed my marriage to Steve was plummeting it coincided when Pink’s So What? became extremely popular on the radio. I love her music, and I loved how she was able to sing her (soon-to-be-ex) husband a song full of snark, yet full of emotion on how he let her down when the going got tough. And the fact she was clearly going through similar issues in her marriage the same time as me? Fate. One of my old roommates went to high school with Pink, so it was like we were somehow connected through song and 6 degrees of separation. Kindred spirits.
In my head it appeared so.
That song was my anthem, and when I moved out for awhile, I listened to it non-stop. I danced my little heart out with my hands in air when it played in the bars, it was on constant repeat on my iPod as I ambled through the city streets (I stayed with a friend and her husband who live in Philly), and one day when both Melissa and her husband were at work, I was blasting it singing at the top of my lungs, only to open the bedroom door to use the bathroom, and realize Chris was home.
At the time when I thought my marriage was about to meet its’ maker, this song empowered me. I wouldn’t have been quite so snarky had I written a song myself (yeah, I would), but I loved that no matter what happened, through all the hurt, the anger, failed marriage and all, even though you could tell it’s not what she truly wanted, she was going to be OK. And that was all I wanted and needed to realize for myself; that I was going to be OK.
It was a relief to come to the realization, that had it come to that point, I would be able to stand on my own two feet and get by alone. I had a successful career, a bit of savings, and plenty of framily to help when I stumbled.
As you all know, Steve and I realized that we wanted to stumble along through life together, rather than stumble apart. There was still so much good there, but it tends to get swept under the rug when the bad is staring you in the face.
We are three weeks shy of our 7th anniversary. We stumble. We fall. We let each other down. We get back up, sometimes needing the help of family to help put the pieces together. That’s life, really. He still does things that irritate the hell out of me, and I know he can say the same about me. I’m
loud and fight dirty outspoken, and he avoids confrontation at all costs. That’s never going to change, and all we can do is let it make us or break us. Or maybe he could stop doing the things that drive me insane.
Being the chronically ill and infertile wife to a man who deserves all the wonderful things life has to offer is agonizing. We had so many plans, big dreams, and I often feel that his life would be less burdensome if he were with a woman who is the picture of health. It’s a weird thing to feel guilty about. I can’t change the path my health has taken, and there’s no one to blame (but seriously Mom & Dad, what was in the Philly water you both grew up drinking?). I only wish Steve and I had more than a mere three weeks of “normal” newlywed bliss before I got sick.
Our “normal” has become waking up on Saturday wondering if it’s going to be a good or bad lupus day for me, leaving him to go out and about alone if we are faced with a bad day. There are a lot of bad days. It’s him watching me attempt to hold back tears as I open another baby shower invitation. It’s my pretending not to notice his aggravation that a day at the beach for us is not what it once was. Or his disbelief that I am STILL in bed at 6pm when he gets home from work. It’s being nervous to book vacations because we don’t know where I’ll be health wise that far in advance. It’s wondering what the weekly doctor appointments and blood work is going to tell us next. It’s knowing I’ll be on chemotherapy for the rest of my life. It’s the not knowing, but having it looming over our heads every. single. day.
Per usual, I’m going to say something that I should probably keep to myself, but I’d be selling myself short if I hit the proverbial mute button. Get judgey, be insulted, but this is me, and this is how I feel, and have felt since I realized almost 7 years ago that this lupus thing was never going to go away.
This sounds whiny, and you know how I feel about whiny. Hard is hard, every couple has their issues, and no one’s journey is any less difficult than the two people next to them. Steve and I make the most of this life, we’re grateful for the good days and the bad days where I slap on some makeup, suck up the pain and enjoy a night out with friends (or whatever we decide to do). I sometimes wish it could all be a little less… complicated
Over the past two weeks my lupus has started to significantly flare again. My body is doing things that it hasn’t done in years, having symptoms that I haven’t had since my initial flare after we returned from our honeymoon a little less than seven years ago.
It’s scary and frustrating. In October I was putting McDicky on a pedestal for being aggressive with my treatments, to getting me off high dose steroids and onto a medication regimen that finally worked. I lost the steroid weight, and I was feeling good. Yet somehow, without even knowing, I stepped on a land mine.