The last thing I wanted to do today was talk about being sick.
I just was not in the mood.
But as it turns out, today was one of those days I couldn’t get out of it.
It has turned into a job, as of late…the whole ‘talking about being sick’ thing. And that can be wonderful. People are being helped. Eyes are being opened. Money raised. Research done. Patients feeling less alone. I’m proud of all of this. I really am. I will continue to do it. I really will. But life has been kicking my ass as of late and it was one of those Sundays where I had zero desire to allow someone intimate access into my life, my home, my everything so it could be documented for the cause.
I wanted to sleep in and drink tea and read a book and knit. I wanted to go see a movie with my husband. I wanted to finish a monopoly game with the kids.
I wanted to NOT think about how grotesque I currently feel. How even my PJs hate my steroid body and how the heat has given me rashes in places I didn’t know you could get rashes, or that I had places.
I’ve been cranky for days waiting for medication to kick in and steroids to taper off. More swollen than usual. I bet if you threw me in the Pacific I’d bob up and down like a buoy.
So of course a photographer was going to follow me around all day. And take as many photos as humanly possible. Because it wasn’t enough that sitting over my laundry that morning I couldn’t even find a bra that was comfortable and it was reducing me to tears, I had to try and look presentable for the world.
The last time I looked presentable for the world my own grandfather pretended he didn’t know me and basically disowned me in front of his nursing home staff.
That’s not my granddaughter.
It’s ok grandpa. Really. I get it. I don’t know her either. I’m getting to know her though. She’s still pretty cool. But I get it. You’re not the only one, so don’t feel bad.
I am just so tired. The roller coaster. I feel like I am doing so well and fighting so hard and I have come so, so far. HELLO… DO YOU SEE HOW FAR I HAVE COME??!!!! HELLO!!! MEE!!!!! OVER HERE??!!!!
…and then someone sees and I stop flapping my arms because I realize they aren’t my arms and I cover them all embarrassed like and slink away back into my new found place of quiet where I just play the role of Mom. I don’t really tweet or facebook or talk to anyone or text or call anyone. I just go see my doctor, and take care of the kids.
Rinse, lather, repeat.
It’s safer that way.
I don’t get accused of doing too much or too little. I don’t talk to anyone about my illness or how it makes me feel. I don’t talk, period. I just wait.
Wait for the weight to come off. Wait for the steroids to be gone. Wait to be taken up on my constant offer of celebrating life. Because I’m here and I just want to enjoy the ones I love most.
Which put me in this ridiculous position of trying to help so many others ‘like’ me. As if we all have some sort of magic ‘sameness’ that we all KNOW we do not. As anyone with a chronic illness well knows, the ‘chronic’ part of that description of our lives sucks way worse than the ‘illness’ part.
But maybe that is why I got dressed anyway. I didn’t cancel. I didn’t call and stop the whole thing. Because I am hoping that by some miracle, chronicling this entire portion of my life…horrible bits and all, vulnerable parts and all, will mean something when this portion is over. Will help someone.
Even if it’s just myself.
So yes, today I was followed by a lovely photographer. For the second time. My family seems to keep tolerating these intrusions although we’ll see for how much longer.
And tomorrow, after I get the kids off to school, I plan on having tea and knitting.
Yes, I’m gearing up for Tuesday. Yes, I care more than I can possibly explain. Maybe that is why all of this is also so hard. The idea that on top of everything else, the fight, the struggle, the absolute essence of all we’ve worked for could be gone as the nation votes is not helping my mood. I can not believe half of the country is willing to play with my life, my family, my health in this manner…
…you can read my final blog post for the President’s re-election campaign at BarackObama.com right now, and please feel free to share it with as many people as possible before they head to the polls.
In the meantime, I’ll be over here. Hunkered down in my corner with my tea and my knitting (doctor approved in 15 minute increments before a joint stretch…but I can’t even go that long yet so don’t worry) and working on my diet.
Eventually my grandfather will see me again. As will others.
And, eventually, I will want them to.
We are not the same but the struggles are so familiar – to be present with both the joy and the despair, sometimes in the same moment. It does help, to have you and others share the trials that we rarely talk about, because to talk about the pain, the depression, and the daily struggles, as often as they happen is impossible for most others to hear. Thank you for sharing the once and future, as well as the current, you.
You are amazing, as always, and what you are doing is brave and important and generous. Hang in there xo
Sorry to hear it’s been rough lately, that really sucks. My hubby (has Lupus, too) has struggled, too, in the last month. He blamed the seasonal changes. Now he’s had a horrid cold. Yuck. Wish I could do more to help you, but please know you’re efforts are appreciated and your hopeful spirit is admired.
I crochet all the time, I get especially fanatical about it when stressed. It does help, so I understand your yearning to knit. Or if I am in a woe is me moment and don’t want to cry for myself, I’ll read a book that will give me a good cry. Helps just to get the release. Whatever works!
I would love to blame seasonal changes. It’s really just my Rituxan wearing off too soon and me trying to tough it out until this round kicks in. We’re now going to go 4 months between Rituxan instead of 6 so I don’t dip again. We hope. And we’re getting me off these damn steroids.
Oh fuck.
I’m coming over asap.
Hi, just found your blog. I have Wegener’s Granulomatosis and Lupus, and a host of other related auto immune issues. I found your blog today, because I am in bed, unable to get up fot the fifth day in a row. If I didn’t know better, I would swear I had written your post. Five years ago, as my grandmother was close to passing, I flew to see her one last time. She was my most favorite person on earth and I loved being with her every day as a child. As I approached her bed, my aunt told her I was there. I expected to see happiness. Instead, my grandmother looked at me with disgust and said ” You are sooo fat.” and looked away. Last words she said to me. I guess four years of steroids took more than my body.