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I am Marie Bernadette.
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Posts tagged "psoriasis"

can’t say i’m overly surprised - stress, life, winter, etc.

but dear GOODNESS i don’t need this right now. i really, really don’t.

finally did my lights. i’m back on the cocktail of steroids, things-to-keep-my-body-from-freaking-out-about-the-steroids, and light therapy.

and i’ve been back in town for a week now, and i just did my lights for the first time in several months.

there’s something incredibly psychological about it, but i can’t pin down what it is. all i know is….here we go again.

Last week I met with my dermatologist, who is in my top 5 favorite people ever (if I had such a list) because of two things: 1) He’s a realist, not an idealist. 2) He listens to me and actually takes what I say under advisement. What a novel idea! Here’s the thing… I’ve been on methotrexate for nine(ish) months now. Minimal improvement, and my last blood tests showed a noticeable spike in my liver enyzmes, which translates into “bad things were happening in my liver”. So… farewell, metho. It’s been fun, but the cons outweighed the pros, and you are done. [update: bloodwork yesterday revealed my levels are back down, meaning “my liver is functioning like it should be.” woo!]

So then it came down to: where do we go from here? I’ve tried all but one topical (note: you’d think I have a side-business selling skin medications if you saw my bathroom cabinets…) and Enbrel/Humira/etc. seem a little bit like overkill at the moment. So the current plan - try the one topical left I’ve yet to find a failure (Tazorac. It sounds like it plans to taser my skin right off, or something), back to steroids on the weekends, and 3x/week light therapy. Sounds like something I’ve tried before. Back to the derm in May (which means I’ll be back in Ohio in May) to reassess. Basically playing the waiting game of “how bad can it get?” while I play the mental game of “how much do I care?” Gotta love it. (and, because I respect my derm so much, I even read the Enbrel info he gave me. Still sounds like overkill.)

THAT said - today, I give a mega shoutout to Tim Hortons Cafe and Bake Shop. While patronizing their establishment in Steubenville today (cheddar cheese bagel, toasted, with a medium coffee, 2 splendas) I noticed the employee checking me out had relatively severe psoriasis. At this point, it’s something I automatically notice - like the color of someone’s eyes. I fought back the urge to say anything, because I know what it’s like when someone calls attention to something you’d rather not acknowledge, but what I really wanted to say was “I understand”.

Instead, what I’ll say is *props* to Tim Hortons for hiring workers with a visible skin disorder that so many misunderstand, judge, and shy away from. Psoriasis isn’t contagious (newsflash!) but awareness is. The more you know, the less you make a fool out of yourself by being afraid of something you can’t catch. May this one person’s witness - silent as it is - serve to grow the knowledge of the general public.

Just ‘cause we look a mess doesn’t mean you have to fear us. True story. And if you ever see me walking out and about, feel free to ask me. The acceptance stage was years ago - my goal is just to make you, the unsuspecting person on the street, more comfortable. And to get you to stop blatantly staring. That would be a nice bonus.

my liver enzymes are slightly elevated. again.

doc: “just wanted to make sure you’re not drinking while on methotrexate.”
me: “i have been depressingly sober for 9 months.”

looking forward to our conversation next week, to say the least.

psoriasis: probably flaring. feels like it, anyway. you’d think i’d know that feeling by now.

methotrexate day. lethargic.

bloodwork day. waiting for results is always fun.

icing my knee. still can’t go running.

Today, I remembered how thankful I am for family. We may all be a little…dramatic (it’s true), and… argumentative (also true), but…we’re also family. And that’s a bond bigger than any I’ve seen this far in life.

My brother Mark, sister Liz, and I (60% of the kids in the family) went to a 5K Turkey Trot this morning in Wheeling. My first race -ever-, Liz’s third, and Mark’s way-more-than-third (he’s completed 2 marathons). We each set a new personal record, went beyond our own expectations, and then celebrated like none other at the end. (For the record, Mark finished in 24:30, I in 29:07, and Liz in 30:30.) The crazy “hell YES Team E” feeling at the end just reminded me how much I love and need this family. Because we can be crazy…together. Shamrock On!

And then the following happened later today. I was playing blocks with my nephew, who is almost three.

"Aunt Rie, you have a boo-boo on your elbow!"
"I do?" *glances down, notices the psoriasis that has been there for seven+ years* “Oh, you’re right, I do.”
"But why? Where did it come from?"
"Well, J, they don’t really know…"
"I’ll kiss it and make it all better." … "Aunt Rie, that tickles!"

It took everything in me to not cry. That kid rocks my world. 

I am incredibly thankful, and blessed. May you notice the same in the occurrences of your own life.

Bloodwork day when you’re on methotrexate…

cue 24 hours of wondering and waiting to hear if your liver hates you yet.

#life.

Had bloodwork done yesterday. I’ve been on 15 mg of MTX for three weeks now (I think it’s three weeks? I just took a dose today).

The update: still golden. no freak-outs in my bloodwork. my liver is truckin’ on.

:)

If you have psoriasis, you’ve got to watch this. He talks straight, real, and still makes people laugh.

What has happened to humanity?

In England,some young people (and perhaps there are a few old ones mixed in) think they’re entitled to…well, whatever they can get their hands on by hook or by crook. Since when did that become acceptable behavior? People are being killed - and for what? Plasma televisions?

And here in America… oh, America. You’re the nation I’ve grown to love more and more as I’ve learned more and more. And love you, I do. I pray we’re able to continue our streak of greatness, because the truth is that we are an exceptional nation. There’s a reason so many of my ancestors came here - they were pursuing something greater than what was available to them in their native countries. And you know what? I’m not an Irish-American. I’m not a Welsh-American. I’m not a Swiss-American, nor a German-American, nor a British-American. I am all of those things, yes. I have some lovely Irish traits (hello, freckles) and some Welsh (hello, “dark Irish” coloring) and some Swiss (I love chocolate…?). But who am I? I am an American. Unhyphenated. I didn’t grow up in any of those countries. I may preserve a tiny bit of their culture through my family members, but I am straight-up American. And I love that, and my country.

But dear goodness, moving on, sometimes people make me scratch my head and glance appealingly skyward, as if to beg the Creator how this could happen. And yet, happen it does. Part of that whole free will thing - those of us with the ability to speak, do so, often relentlessly. Occasionally - perhaps more so, depending on the speaker - we are profound and even prophetic. And occasionally, we speak so harshly as to wound and permanently remain in the memory of our audience.

We all know I’m not the nicest person in the world, though I do subscribe to the theory of trying. I fully admit that I’ve grown nicer - or perhaps simply more censored - as I’ve aged/matured. Part of this has been in response to what I’ve heard, and what’s been directed at me. That whole “sticks and stones may break my bones, but words can never hurt me” stuff rhymes nicely but somewhat fails in practice.

10th grade of high school, in homeroom, a fellow classmate decided to announce to the class that “it looks like she has scabies, oh my Gawd!” Take a wild guess who the ‘she’ is in this statement. I’ve never forgotten those words, so apparently they have some power. And that’s just it: words have incredible power.

What is awareness? Awareness is using words in whatever medium you choose to educate, to inform, to edify, to enlighten those who otherwise would be in the dark. It’s standing up for what you feel strongly about - whatever the topic - and making a proclamation of sorts. Well, this is it.

Making fun of someone because of an illness, a disfigurement, a disability, or a physical anomaly is weak and petty. There, I said it. Deal. If you really think posting photos of Kim Kardashian with psoriasis on her legs so hundreds of similarly weak people can leave hateful comments is funny, you’re wrong.

Grow up. Superficiality is for those unable to face their own insecurities and failings.

Seriously.

I went in today for my 3 month follow up since starting methotrexate. I’ve been treating my psoriasis for seven years now - eep, 7 - and I *still* have yet to clear. Which sucks, and he knows that. So I started methotrexate, finally, after exhausting pretty much every less-risky option.

I’m combining mtx with NBUVB light therapy - I have a home unit. Sound like a lot? Yeah, well, a chronic skin condition doesn’t mess around. It’s not eczema, and it’s not acne, although I trivialize neither of those conditions. Psoriasis is a wench. It doesn’t mess around. I know the psychological effects that can come with it. And my kick-ass dermatologist gets that.

He’s proactive. He gets that I’m sick of just sitting around hoping things get better, when psoriasis is an incurable condition. He isn’t playing the old “you know, maybe you should just accept it and be glad it’s not worse” song and dance that I had to accept so many times before. And you know what? I’m sick of that game, and I have been for a while, and I like that he’s not playing it with me. He wants to see me well. How awesome is that? Answer: really freaking awesome.

Plus, he’s going to keep me as a patient even though I’m moving to NY. He’s going to consult with me via phone after every bloodwork I have done and submitted, and I already have an appointment for Christmas break to check on how things are. And we’ve already concluded that if there isn’t a serious difference by then - and I’m going to get up to 17.5 mg/mtx/week by then - we’ll move on. To something different with the potential to work.

I can’t help it: today’s appointment gave me so much hope. And I love hope.

for the first time in a few months…

I climbed out of bed after I had already gotten cozy in my blankets.

I grabbed the Scytera.

And I did my narrowband uvb light therapy. 40 seconds per side to start again, because I’m a type I skin type and I burn rather easily.

I spent the time - yes, all 160 long seconds - saying prayers for all those who suffer from a chronic illness. It can be so easy to fall into despair…but, my friends, do not leave the side of hope. Love bears all things, hopes all things… and I love. I love myself in spite of what psoriasis may have done, is doing, and will do to me, because my Creator knows what he’s doing. 

So… Go Me. :)