Chapter 5 Skylar #2
I put my phone down while she types and dim the lights.
My photophobia is off the charts tonight.
This is why it’s so much easier to hang out online.
When someone’s with me physically, I can’t control my environment as much.
I get fatigued easily and end up flared because it takes a lot of effort to vocalize my thoughts and maintain eye contact.
Online, no one’s offended if I need a break from conversation. No one cares if I sit in the dark or haven’t taken a shower.
i’m at a point where i’m ready to self-diagnose myself, Emy says. all signs point to hEDS, except the lack of hypermobility in my wrists. i’m not an obvious case.
Self-dx is valid! Analia says.
Definitely, I add. From what I’ve learned in the group, it’s easy for doctors to miss Ehlers-Danlos syndrome. I’m convinced you have it, for what it’s worth.
getting a dx would give me mental peace, Emy says. it’s like, why am i exhausted today? pain? family? dehydration? acute illness? all of the above?
It’s so hard to know, I say, sending a hug. The doctors should be the ones figuring that out, but they only want to know what your weight and mental state is.
trying to explain my symptoms to a doctor is like nervously asking a guy, “what are we?” Emy sends a crying GIF. it’s kind of humiliating, i end up sounding desperate, and they always hit me with, “i don’t know, i’m not really looking for anything serious.”
Omg so true, I say. Even if you pour your heart out, they still look bored and dismiss you by saying, “Let’s just see where this goes.” Like, sure, I’ll just sit around in pain for the next three months until you bother to pencil me in again.
This makes me even happier I’m not dating, Analia says, but she sends a bunch of hugs too.
sorry i’m such a wet mop lately, Emy says.
Are you kidding me? I say. Vent as much as you like.
We’re here for you, Analia says. It’s been a long time since I was undiagnosed, but we’ve all been there. We’ve all had crappy doctors.
Just look at mine, I say.
When my IIH came back in November, I requested a CT venogram to see whether I’d qualify for a less invasive type of brain surgery, stenting, that helps some IIH patients.
My neuro-ophthalmologist, Dr. Wharton, point-blank refused.
He claims stenting is “still experimental” and I should focus on weight loss.
I want a second opinion, so I requested my records to speed up the process.
I go back to organizing them. My eyes land on a note from Dr. Wharton in my chart, and my heart rate skyrockets. I attempt deep breaths, but that’s near impossible with my meds.
I type, I think I just found out why I’m not able to get a new neurologist, then post in the group.
Skylar King: Help! My neuro-ophthalmologist blames everything on BMI, so I’m trying to get a new one.
Problem is, I have a rare disease, so the specialized clinics require all my records.
He put a note in my chart that since I haven’t lost weight, I’m not “complying with his treatment plan” and have “self-victimization mentality.” How can I report this when I still need him to continue prescribing my medication until I get a new doctor?
I cross-post in my IIH group since it’s illness specific and my situation isn’t an outlier.
Most of us have dealt with a toxic doctor.
Or ten. The egotistical ones, who feel threatened if you know more about your body, are some of the worst. But getting blacklisted this way?
That’s new even for me. A note like this in my chart can keep me from getting future help.
Three people write, :sending hugs: and one person writes, Doctors always fat-shame us!
I refresh the page. Come on, IIHers.
The only post with any traction today is labeled NSFW.
Paola: I asked my neuro about sex and if it was okay to engage in breath play. Y’all should have seen his face!! He didn’t know, so I’m asking those of you who are kinky like me.
I expand the thread, which already has seventy-six comments in the last hour.
Claribel: I get lightheaded after, but I’m never giving it up!
Mel: If you have a shunt, don’t squeeze on the side where your tubing is.
Priya: It can be really dangerous, so you need to have proper discussions about safe words and limits first.
Tia: What is this sex that you speak of?
I snort so hard it shoots a bolt of pain to the back of my head.
A new message from Analia brings me back to our chat. I have to go, sorry. Kalle just got back from Sweden and stopped over to say hi.
Emy sends a magnifying glass. this late? is he sleeping over?
He might, Analia says. He’s drowsy (and adorable when jetlagged ).
I send a dozen exclamation points to Emy in a private chat. She replies with an eggplant and a wink.
Kalle and Analia have been best friends since childhood.
They aren’t going to do anything but sleep, but we can dream.
That dream involves their marriage and Kalle taking Analia to Sweden with him someday, but we’d settle for just a trip.
Kalle’s in Sweden at least twice a year to visit his relatives, and Analia’s never even made it to the Canadian side of Niagara Falls.
So just relaxing, then? I ask.
Catching up and maybe a movie. My fibro’s flaring, so I don’t have the spoons for much else, despite a full day of getting nothing accomplished.
u don’t need to be productive when ur in pain, Emy says.
I know, but I got locked out of my apartment earlier because I forgot my keys and ended up waiting outside for my landlord. Messed up my whole day, and now I’m sunburned on top of it.
sunburned? Emy asks. it’s february.
I know! I’m very annoyed at my Irish skin. Why couldn’t I have inherited my grandmother’s Mediterranean sun tolerance? But no, the only thing I got from my Catalan side is my hair and a lack of cute freckles.
I start telling her she’s cute either way, but I pause halfway through. My post has a new notification. From Pike.
Oh no. Is he going through all my posts after what I shared? He could find the most intimate and embarrassing things about me if he bothered searching my name.
Pike: What an asshole. Hope you can get him reported. Also? You looked gorgeous today. Followed by the blowing-kisses emoji.
I stare at that little yellow face for a solid minute. Is he flirting with me?
Wait. Wait.
His mom is in the group. He has to flirt with me.
But then he sends me a message. It’s a picture of him, captioned, How’s this for dinner?
I fan myself. He’s wearing faded jeans and a black leather belt coupled with a navy shawl cardigan.
Dark stubble lines his strong jaw, adding a rough, masculine edge to his appearance.
He stands in front of a mirror, biting the side of his bottom lip, but there’s no smugness in his expression, no teasing glint in his eyes—just this unassuming stance, like he’s completely unaware of how hot he is.
He has to know.
Omg, I tell Emy as I send her the pic. He went home and tried on outfits! Broody hot poet is also a model.
She sends a sweating GIF. i feel personally attacked by how attractive he is.
She’s right. I’ll need to dress up to feel even remotely adequate next to him.
That works, I tell him, knowing I’m in way over my head.
Glad I’m approved, he says, but then he texts again a few minutes later. What are you going to wear?
Whatever I want, remember?
I don’t get a preview?
My eyes widen. You don’t have picture privileges.
Fair. I’m sure you’ll look nice no matter what.
So I can show up in sweatpants?
If that’s what you need to be comfortable.
I heart the reply. It’s a good answer. Pike is different than what I expected.
Maybe this ruse won’t be so terrible after all.