Too Pretty

Big News from the Victoria Secret Fashion Show-

The Fantasy Bra this year cost a reported $3 million and was approximately 450 carats of diamonds.

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Crazy, right?

Oh and P.S. three of the top models walking in the show have confirmed chronic medical conditions.

Which brings us to my least favorite compliment/not-compliment, which has been uttered to many a Chronic lady, in the guise of making her feel better about herself while really just making her want to punch someone in the face:

You’re too pretty to be sick.

Um, well I am sick, so um thanks? I guess? Maybe? What?

Like really. I get that we all have an idea in our heads that Chronic people look like this:

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But that’s not really how it goes, and now we have Victoria Secret models who are showing the world that Chronic looks like this too:

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Let’s meet these Chronic ladies, shall we?

Bella Hadid

Yes—or should I say Yaaas—girl got to walk past her ex-boyfriend on stage while looking like this:

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But, hey, side note, Bella Hadid has Lyme disease. According to an interview she did with US Magazine, her worst symptoms are pain, brain fog, and extreme fatigue. This is a young woman who shows up to work (werk) and gets it done. Then she goes home and sleeps for 14 hours, gets up, takes a nap, gets up again, and then sleeps some more. Sound familiar, Chronic friends? We call that Tuesday here in Chronicville. Maybe with a little less werk, though, and a little more work…

GiGi Hadid

Mandatory Credit: Photo by Matt Baron/BEI/Shutterstock (7529865qx) Gigi Hadid on the catwalk Victoria's Secret Fashion Show, Runway, Grand Palais, Paris, France - 30 Nov 2016

Bella’s big sis has always been vocal in her support of her sister (and mom and brother) who have Lyme disease, though she herself does not have it. Right after the Victoria Secret Fashion show this year, though, many speculated that the “girl-next-door” model had lost too much weight in preparation, which led Hadid to make public her struggle with Hashimoto’s, a thyroid disease. Hashimoto’s caused her to have a sluggish thyroid (causing headaches, weight gain, and tiredness), and the medication that she was taking to normalize it wasn’t quite right and caused her thyroid function to sway to the other extreme. Her medically-induced fluctuating metabolism was the real cause for her change in appearance. Medication adjustments causing just as many problems as they solve? Stars, they are just like us!

Kendall Jenner

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Sleep paralysis is more of a phenomenon than a disease, but it is a condition that is chronic in nature and causes a person to not be able to move or speak while they transition in or out of a sleeping state. As chronicled in an episode of Keeping Up With the Kardashians, Kendall has had to figure out how to balance her frequent paralysis episodes and mounting anxiety over her condition with her desire to remain a top model. Work/life/Chronic balance got you down? Kendall knows what’s up. And it’s not her…or me (hemiplegic migraines cause temporary paralysis so I GET YOU, GIRL).

Here’s the thing, Chronic friends. The whole world agrees that these ladies are pretty. It is also documented by medical professionals that each one of them has a chronic condition that is seriously impacting her life. Ergo, “You’re too pretty to be sick,” is just about the dumbest sentence ever. Chronic don’t care what your face looks like, honey. But that central nervous/endocrine/neurological system? Damn girl. That’s what Chronic’s lookin’ at and it unfortunately likes what it sees.

Better compliment?

“I’m sorry you have to deal with such crummy Chronic circumstances…

…By the way, you look really pretty today.

Lather. Rinse. Repeat.

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Inside Out

Alternate post title: Going Off Your Chronic Meds, The Disney/Pixar Version.

You guys. I went to sleep at the end of August and now it is December.

I know I was awake for at least one day in October, because I dressed up in a pretty amazing Chewbacca footie-pajama-style costume to hand out candy on Halloween.

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But the rest of it?

Evaporated into Chronic air, as time tends to do for me.

Often.

The catalyst this time seemed to be my Chronic medications. I was taking something for pain/to help me sleep, but for no apparent reason I started only being able to sleep during the day and was wide awake at night. I tried tweaking that, but it only got worse, so okay, that means it has to go. Turns out that med was severely impacting my blood pressure in a negative way, and when I cut it out, my blood pressure sky-rocketed, egged on by meds taken to raise it anyway. So then I had to fix those…but again, there was no right fix. Which means they had to go.

Yep, you read that right.

Bye-bye artificially induced wellness.

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It’s time to see if there’s any real wellness built up under there.

In the 7 years that I have been a diagnosed and symptom-managed Chronic (as there is no cure for, well, anything), I have never been off medication. I have gone up, rarely gone down, but have never been able to get off altogether. When I did have to go off one medication in 2012, the reaction was so severe I had a hypoxic (lack-of-oxygen) induced seizure. So, you know, this is not on my list of things I’m excited to do.

But it had to be done.

Now, for your reading pleasure, a dramatic re-enactment of what it feels like to go off your medication (in a doctor supervised, very slow and safe way) for your Chronic illnesses, with the help of the Disney Pixar classic Inside Out:

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Ohmygoodness YES! THIS! This is what I have been waiting for! My body has given the signal- it does not want this crap in my bloodstream any more. This is a good sign! This means I’m better…right?

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Ohmygoodness NO! WHY? What does this meannnnnn? Am I better enough? Can I handle this? I turned blue last time. BLUE. I mean, I look great in blue, but not in my skin! Why do these things always have to happen to me…

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Yeah? WHY? Why do these things always have to happen to me? What did I ever do? Huh? This is CRAP. I mean SERIOUSLY. Who is in charge here? Why didn’t the doctors warn me when I went on this stuff that it would be so hard to come off? Why the flip did they figure I’d be on it forever so it wouldn’t matter? Jeez! I mean COME ON. This is so unfair…

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I mean, TOTALLY. Totally unfair. Like, is the universe just ignoring the fact that I am awesome and do everything right? I run, for Pete’s sake. I eat boring food that’s healthy and avoid sugar like the plague. Ugh. Really. Like, this is so not cool. Shouldn’t I get a break?

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I’d really like a break. This is really hard. It’s lonely. There’s no way to make it better. It just has to happen. You can’t help me. I can’t help me. I don’t know if this withdrawal is ever going to end…

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Now it’s December and I once again know what day it is. The transition is not over completely, but it’s better. I didn’t turn blue (save for that run-in with sadness). I’m okay(ish). I’m going to be okay. (I think. I hope.)

This is, of course, the abbreviated version. It’s been a roller coaster, and I hate roller coasters. I have a tendency to hide under the covers at their mere mention. And, like I said, it’s not over. You don’t get used to not having something in your system in a few weeks when it’s been in there for 7 years. This stuff worked because they each did something I really needed for a time: One depressed the pain signals to my brain and the other stimulated the nerves in my blood vessels. Blood vessels are everywhere in your body. Nothing’s telling them what to do anymore. Nothing’s telling my overactive pain firings to chill pickle or cut it out. Let’s take a moment to think about that for a second…

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Wait, no let’s not.

Most people experience a “new normal” every few years when a big life event happens. As a Chronic, I get a “new normal” multiple times a year. I’m practically a new normal pro now, but this feels like a much bigger new normal. It feels right though, and after having felt so wrong for so much of this year, I’m glad that maybe now some things will start to change for the better.

I’ve missed you, Chronic friends! Let me know what you’ve been up to in the Comments here or on my facebook page: http://www.facebook.com/iamchronicallywell