I saw the sign… Mar 19, 2019
“Lupus can be a stubborn disease to treat”
No shit. Isn’t that the understatement of the millennium.
More on that in a bit.
So what do you think of my facelift? John and The 215 Guys did a bad-ass job with this, right? Every time I look at my new site, I get all giddy with excitement. They were recommended to me by a friend, and I couldn’t be more thrilled with the end results. John and the gang, THANK YOU for putting up with my total lack of organization, never remembering which password goes with what login (I swear, I will change ALL the passwords!), and my not knowing the domain and host server are two different things. You boys rocked my socks!
Take a peek around, sign up for my newsletter (!!!!), and leave me some lupus love. I’m curious to know what y’all think.
Since my father died, I’m always looking for signs that he’s ok. I’m not even sure I truly believe in that, but when I’m having an awful day and the grief is heavy, I look around for something- anything. When the Eagles won the Super Bowl, I knew, wherever he is, that he was doing fine, celebrating and doing his Eagles Shuffle. When the TV was inundated with commercials for CAR-T cell therapy, it took everything I had not to hurl my wine glass (or coffee mug) at the screen. But, in some strange way, I knew he was finding a way to reach out.
One of the reasons I had my blog redesigned is because it was hacked. I mean, really, who the fuck felt the need to hack a site in which the author shared photos of herself with tampons up her nostrils to stop a massive nosebleed? I lost A LOT of content due to the hack (yes, lesson learned, back up ALL THE THINGS!), and it devastated me. When I met up with John last week to go over details before we went live, he showed me a website that allowed me to recover some of my content. Thanks John! I clicked on a post…
While I was writing this my dad called to check in. I can tell my mom a lot, but I am a Daddy’s Girl. You know, my voice goes up 3 octaves when we talk… “Hi Daddy!”
He said he read my blog, and wished he could take the pain and go for my infusions if he could. As I held back tears, I reminded him he’s been through enough.
MarlaJan: Daddy, I think you’ve endured plenty. We’re Wexler’s, we got this!
Daddy: You know when I tell people what I’ve been through, they don’t believe me. Heart attack, debilitating asthma, prostate cancer, Chronic lymphocytic leukemia…”
MarlaJan: What the fuck is wrong with our gene pool?!?!?!
We laugh and talk about everything our family has survived, and try to figure out who exactly fucked up our gene pool.
So, as I begrudgingly take my increased dose of steroids for the next two weeks, I just have to remember that I’m a Wexler. Being a warrior is in my genes.
By that point, John had left, I was sharing a table with a bunch of hipster chicks who were bitching about student loans and boys with beards, and the Claire Danes Ugly-Cry-Face came on strong. Full on lips quivering, tears dripping on my laptop.
All the feels. It never gets easier.
I took the tears as my cue to leave and head back to the conference I was attending down the street; I had enough feelings for the day.
Back at the conference listening to a presenter and simultaneously scrolling through my Facebook feed, I came upon an article that caught my eye.
“Genetically engineered immune cells wipe out lupus in mice.”
I knew before I clicked that the article was on CAR-T cell therapy, the treatment my father underwent for his leukemia that, in the end, killed him.
HADNT I HAD ENOUGH FUCKING FEELINGS FOR THE DAY???
I could feel my little shoulders begin to tremble once more, I bit my lip til it nearly bled, and I held back tears. I read the article. Some of my anger dissolved, and it gave me hope for the future with this shitastic disease.
I had been going back and forth with what type of post I wanted to write when I “announced” the facelift I got over here on my little space on the interwebs. And once again, Papa Wexler came through and gave me the sign I needed.
He’s OK. And so am I.
Here’s the link to the article- it’s truly fascinating! Genetically engineered immune cells wipe out lupus in mice
Love you all,
MJ
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