Miss Migraine: Emergency room averse

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The Adventures of Miss Migraine is an ongoing column about my life with chronic migraine (and other crap).

Saturday I had to go to the emergency room. I’m fine now, but I experienced a sudden and extreme pain in my lower right abdomen that was anything but normal. In this situation you’d think my biggest concern would be OH GODDESS AM I GOING TO DIE THIS FUCKING HURTS, but no. My biggest fear was that they’d tell me there was nothing wrong and I was “exaggerating” my pain or something like that.

I knew something was wrong. The pain started out like a bad menstrual cramp but quickly escalated to “I cannot stand up straight my insides are on fire what is happening.” The pain was definitely in my right ovary, and I thought perhaps a cyst had burst (nope–endometriosis, but I was right about the ovary part). Probably something you should go see a doctor about, right?

But so many times I’ve seen a doctor, or gone to the ER with a severe migraine that’s lasted five days, and they’ve said “Oh, it’s just stress, here are some muscle relaxers/Vicodin.” (Muscle relaxers and narcotics, by the way, don’t help migraines. At all.).

Or I’ve gone and said, “Hey, you can look this up on your fancy computer because we live in the future and all my medical records are digital, but my migraine specialist said I should go to the ER if X happens, and X has happened, and she’d like me to get an MRI,” only to be told “Whatever, it’s just stress, but we’ll do a CT scan just to be sure!” Real helpful, doc.

Once, before I was diagnosed with chronic migraine, an ER doctor pressed so hard into the back of my neck I started crying. I went in because I’d had a headache for a month straight, and none of my regular doctors had any ideas. Urgent care wasn’t a thing yet. He was trying to “prove” I had a tension headache and just needed to “relax.” Nevermind that neck pain and soreness is often a symptom of migraine, AND ALSO he pressed so hard it would have hurt even if I didn’t have a migraine!

ER doctors, especially male ER doctors, have a history of dismissing my pain and not listening to what I say about my own body. So, you can understand why I was hesitant to go to the ER despite the awful stabby pain in my right ovary.

Thankfully, and to the credit of the staff at UPMC Shadyside, the doctors who treated me listened, were kind, and even *gasp* got me a diagnosis. So, bad news–I have endometriosis. But good news–my ER experience didn’t lead me to murder anyone! The next step is to follow up with my lady parts doctor. In the meantime, I’m still in some pain, but no where near the level I was on Saturday.

Onward, I guess?

Death planning for your dog

My dog Lexi is 13. She’ll be 14 in about 6 weeks. She has a progressive degenerative disease that will render her completely immobile sooner rather than later.

Lexi walking in the dog park with her harness.

Right now, she can still go for walks with the assistance of a sling. She’s still happy, though I fear she’s growing increasingly uncomfortable as the months wear on and she cannot readjust herself. The time I have left with her is limited. I’m guessing we’ll have to say goodbye sometime in the summer. I hate this. I wish it weren’t that way. But it is.

I’ve been thinking about and planning for this since she was diagnosed about two years ago. It’s not a morbid fascination or fatalism on my part. With this disease, her chances of dying peacefully in her sleep are slim. Her quality of life is going to deteriorate, and it’s almost guaranteed that I will need to make the decision to end her life when that quality dips too low. That sucks. But it’s part of the deal with owning a pet.

In many ways, this foreknowledge is a gift. Seven years ago, when I had to suddenly euthanize my dog Ruby, I wasn’t prepared. Her end of life experience wasn’t great, and we didn’t think about having her cremated so we could keep her ashes. I don’t even have a clay paw print, just her collar hanging on my mirror.

With Lexi, I’ve had time to think, and reflect, and decide what will make her the most comfortable. Because of her increased anxiety about going to the vet office, I plan to have one come to my house. I want her last memories to be at home, surrounded by her people and her little sister Jaina (who is actually three times as large as she is). I don’t want her to be stressed or upset. I want Jaina to be able to see and smell that Lexi is gone. And I want a clay paw print, and I want to keep her ashes in a nice urn. But above all, I want her to be peaceful. I want her to be comfortable.

Lexi with one of her (current) favorite toys (a worm with cat ears because it was a Halloween toy).

(Yes, I’m weeping as I write this. This reality sucks. This disease sucks. I can’t change it. I can only deal with it in the best way I know how.)

Because I know the time approaches, I can find a vet who’ll make a house call. I can figure out what I need to do to get Lexi cremated. I can pre-purchase an urn. I can make a clay paw print with her while she’s still here, still my girl. I can make an ink impression, too, in case I decide to get a tattoo (I’m sure I will).

And I can spend extra time with her each day, just petting her until she gets tired of it and shakes me off. I can take her for a short walk and let her smell the other dogs in our neighborhood, the cats and raccoons and groundhogs. I can take her with me to Home Depot and Wagsburgh or just out for a car trip so she can smell the air. These are things I’d do anyway–things I’ve done. But they take on extra poignancy now.

Still, none of this easy. But it’s easier now than at the very end, when I know the grief will settle in strong and fierce. Even if you don’t have this “gift” of foresight when your pet will die, you may want to take a few moments to think about how you will handle end of life care and what mementos you want of your pet. It’s not comfortable, or easy, but you’ll feel better when the time comes and the decisions have already been made.


Miss Migraine: Being a woman obsessed with Star Wars is kind of like having migraines

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The Adventures of Miss Migraine is an ongoing column about my life with chronic migraine. A version of this post appeared first on August 21, 2012, on my blog of the same name.

If you hadn’t guessed, I am obsessed with Star Wars. Obsessed to the point that I have it permanently inked on my body and spend inordinate amounts of money to dress up and go to conventions. My office is practically a shrine to it: Posters and action figures everywhere. Even my filing cabinet is covered in Star Wars magnets and hilariously bizarre phrases constructed from Star Wars magnetic poetry (“Have a slimy Skywalker scum?” and “Solo may do or do not this nerf herder.”). The cake topper at my wedding featured Luke Skywalker and Mara Jade (whom Luke marries in the expanded universe books and comics).

My mother knows the expanded universe well enough that on a visit to Toys R Us, she heard someone ask a sales clerk about action figures of “the twins” and knew immediately that this person must be talking about Jaina and Jacen Solo, Han and Leia’s twin children (and then she bought them for me, knowing they are two of my favorite characters). My mother also named her German shepherd Mara Jade, not because she had read any of the comics, but because she was familiar with the character (from my incessant ramblings) and liked the name.

To put it simply, Star Wars permeates every aspect of my life, and by extension, the lives of my family members.

Millenium Falcon replica, R2-D2

Me sitting in a replica of the Millenium Falcon at Star Wars Celebration Europe in London, in 2007.

And yet, many people have had difficulty believing I could be a Star Wars geek/nerd/fangirl/whatever they’re calling it these days. After all, you can find Star Wars t-shirts at Kohl’s and Target and Hot Topic, and it’s cool to wear a pseudo-nerdy old movie t-shirt. When I say, “I love Star Wars,” most people assume that I mean “Star Wars is an awesome movie.” If I say, “I’m obsessed with Star Wars,” most people still assume that I mean “Star Wars is awesome.” At least until I show them the giant X-Wing tattoo on my leg.

At conventions, when people would see me sitting with my dad in the food court, they’d come up and make a joke about how he’d dragged me to the con. My dad would always laugh and say it was the other way around, and the person — always a man — would look a little surprised, but pleasantly so. That has never made me feel better about the assumption.

Like my obsession with Star Wars, my migraines affect every facet of my life, and the lives of my family members. I have yet to get a migraine-related tattoo, but that’s only a matter of time, I’m sure. With 33 million migraine sufferers in the United States alone, I think it’s safe to say there are as many migraine sufferers as there are Star Wars fans.

I miss school and work because of the intense throbbing in my temple. My family has learned to identify when I’m in pain and they know what they can do to help me get through it, the same way they know how to make my month by picking up an action figure of my favorite Star Wars character as a surprise present.

And yet… People sometimes interpret, “I’m in excruciating pain, I’m sorry I have to cancel our plans,” as, “I don’t want to hang out with you.” Or, sometimes, “I have a migraine every single day,” as “That’s utterly impossible, she’s lying.”

X-Wing tattoo close up

A close up of my X-Wing tattoo. The colors are much brighter in person — this is the best I could do with my camera phone.

Professors have refused to give me extensions on papers, even when I have multiple doctors notes and discussed my condition with them at the beginning of the semester. Other professors have told me they will give me an extension on a workshop piece (which goes out to the entire class, not just the professor) only if I agree to letting the professor tell the class my piece is late because of an illness.

In these situations, my X-Wing tattoo equivalent is my paperwork from the Americans with Disabilities Act, which states that my professors must accommodate me. Once they realize I’m not faking or trying to get out of my homework, their entire attitudes toward me change drastically. I understand that many students do fake illnesses, just as some Star Wars fans wish to appear more into it than they are to impress someone. But that doesn’t make me feel any better about the assumption.

On the bright side, my many years of practice as a semi-marginalized Star Wars fan have prepared me beautifully for the challenges of navigating life with an invisible chronic illness. And I’m happy to say that as time has progressed, the disbelief at a hardcore lady Star Wars fan has pretty much vanished. So I have a feeling — call it a premonition from the Force, if you will — that things will only get better for migraine sufferers, too.

Do you have an “X-Wing tattoo equivalent?” Have you ever felt marginalized for something other than your migraines?