#MHAM Blog Challenge, Day 30: A Whole New World in the ER

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Today’s blog challenge for the last day of Migraine & Headache Awareness Month is to watch Aladdin’s “Whole New World” video and discuss the whole new world it would be for me if everyone understood the true pain of migraines and other headache disorders.

I don’t need to watch the video, since I’ve seen Aladdin a thousand times. And I’m only going to discuss one area where understanding of migraines would lead to a huge difference for all of us: the Emergency Room. The true place of terror, and where it matters most. Where we tend to be treated the worst.

I hobble into the ER, ice pressed to my forehead, clutching a basin to puke in. I can’t fully open my eyes to take in the number of patients in the waiting room or the look I’m getting from the triage nurse. But this time, it doesn’t matter.

“Oh no, do you have a migraine? Step right this way, into the dark room.” The WHAT?! “Oh yes didn’t you know we built this? It’s a whole new world, isn’t it?”

The door clicks shut and I am guided to a bed and pillow. The room is mercifully, amazingly dark, and besides that, free of odors and noise. “Sound proof,” she confirms, and takes my vitals gently while I’m lying down. “Let me get someone to start your IV to get you rehydrated,” the kind nurse says gently. Right away?! I think? Amazing. I hear J breathe a sigh of relief. We are always prepared for a fight in the ER, maybe this time will be different. “The doctor will be in as soon as she’s able and we’ll get you something for pain sweetheart, I know how you must be hurting.”

The IV with fluids is started, as promised. Still, I am rhythmically pounding my fist into my forehead. I won’t feel any freedom from fear, really, until I see the doctor. Before long she rushes in.

“Hi, so sorry to keep you waiting. No, no, don’t sit up, I won’t even turn the lights on. I know you have a migraine and I can see you’re in pain even without them. What cocktail usually works for you, dear?”

I almost do sit up, in shock. It takes me a moment to answer. What, no irritated questions? Penlights shining in my eyes? Asking how often I come here, when that information is available in my file? No not telling me what they are going to give me? No scorn, no doubt? “Um. Phenergan, Benadryl, Decadron, and Dilaudid,” I answer warily.

“All right then. Coming right up,” she says reassuringly, squeezing my arm. After the most quick, routine neurological check she bustles out.

I sob silently in relief, J holding my hand, preparing for the long wait for meds, sometimes an hour long. At least I have the sealed, dark room this time instead of an open-topped curtain, hallway fluorescents shining unforgivably into my eyes, the disruptive noises of the whole ER floating in.

But shockingly, the door opens again after only a few minutes. “Sorry,” the nurse whispers. I hear the vials clank onto the counter.

“Wow, that was fast!” J says in surprise.

“Yeah, we saw you guys coming in and checked Elizabeth’s file,” the nurse explained. “We ordered what she usually gets so there wouldn’t be a wait, and just needed Doc to confirm it. We try to not keep migraine emergencies waiting any longer than necessary since the new protocol.”

She is already inserting the syringes into my IV, boom boom boom. “Benadryl,” she breathes, and I already feel more relaxed. “Phenergan…”

“New protocol?”

“Yes, the American Headache Society released a new suggested protocol for emergency departments and we decided to adopt it.”

I can’t even breathe. I feel the tingling all over my body as the steroid, Decadron, enters my blood stream. “And the Dilaudid,” she says, and the strong pain killer slams into my shoulders, stopping my lungs for a moment, and I can feel my heart slamming as the pain is obliterated from my skull, shattered, scattered. Grateful tears slide down my cheeks.

I can’t speak, but J says, “Wow, that’s really incredible!” And I think I must be dreaming.

And of course, I am dreaming. But what an amazing, whole new world it would be if all emergency rooms treated us so well! To be fair, there are times in my local ER when I AM treated pretty well, and I know I’m lucky. But there are plenty of times I’m greeted with suspicion and derision, and I read stories in my support groups every day of the same. We have a long, long way to go.

Of course there are so many areas of my life which would be completely different if everyone understood my illness. I might still be working, for example. But really it’s the medical professionals whom I wish could really, truly get it.

Thanks to all my fellow advocates and bloggers who have made this Migraine & Headache Awareness Month so fantastic! Let’s keep it going all year long!

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Confusion & Worry.

What do you do when your chronic illness provider is world renowned, but doesn’t give you the kind of care you feel you deserve? What do you do when your pain diary doesn’t show the improvement you are supposed to be seeing? What do you do when you are told at two separate appointments that the goal is to get pain under control by the time your 5 and 9 year old daughters are teenagers (at which time they won’t need you nearly as much)? What do you do when control of your pain is taken out of your hands, and then you’re told your treatment is “up to you, and God”? And you’re an atheist?

Tomorrow, I am going against my neurologist’s wishes in seeking narcotic pain killers to deal with some of the headaches I’ve been getting daily for five years, almost daily for thirty. She was always fine with me having them before, until they were cut off by another doctor and she said I’d already done the “hard work” and that was it, done. Since then I have gone to the ER seven times, had forty days completely confined to bed, and experienced the worst headache I have ever had in my life. After that suicide headache I got an emergency appointment with my neurologist’s assistant, who again denied the additional medicine that would make me feel safe, despite the recommendation of my pain therapist. And pulled that God thing.

I talked to my GP and my pain therapist, again. My GP referred me to a pain management clinic she trusts, and my pain therapist supported my decision. Still, I’m terrified. I am terrified it won’t go well, and I’m terrified to cross Dr T and C. I feel like everything depends on this. And I feel like it’s a betrayal, even though I am fighting for my own well-being.

I am supposed to take all my prescriptions in their original containers:

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#MHAM Photo Challenge, Day 30: Gratitude

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Today for the last day of Migraine & Headache Awareness Month, Diana Lee’s (somebodyhealme.com) Photo Challenge Prompt is “gratitude.”

I selected a photo of the people for whom I have the most gratitude, who help me the most on a nearly daily basis in fighting my illness.

My mom and dad have been fighting for me and helping me since I was very small, figuring out what was going on before I could even speak, taking me to doctors and specialists, rubbing my head and comforting and medicating and listening and financing. To this day, they still help financially, assist at appointments and the Emergency Room, and provide frequent childcare when I am confined to bed.

My partner, J, has been taking care of me since we first started dating in 1999, when he was only 18. He has dealt with the in-your-face realities of migraine disease extremely well, nearly every day: having to do more than his share of household duties, comforting me and coming to appointments, keeping me calm during unimaginably severe pain, cleaning up vomit, giving injections, making phone calls, advocating for me, and maybe most difficult, handling depression and hopelessness. He is an amazing father who makes sure our girls are happy and healthy.

I wouldn’t be able to cope without their constant unconditional love and assistance. Thank you.

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#MHAM Photo Challenge, Day 29: Community

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I bet I’m not the only one who’s sad that Migraine & Headache Awareness Month is almost over. This month has allowed our community to shine with blog posts, photo challenges, lots of great memes and awareness facts to share, and the conference this weekend in LA, with all its new research. MHAM inspired me to become more active again with my blog and on Twitter, to make new connections within our community and rekindle old ones. I entered contests and commiserated, comforted and complained. Photos of me were used in an awareness banner by advocate and author JP Summers and I created plenty of my own images as well.

For “Community” I chose a picture of me with family, a picture of a few of my friends, and a piece of a photo of the advocates at this year’s Headache On The Hill along with a piece about the community at Migraine.com. I can’t think of a better representation of the people important to me as I fight my illness every day. Well, I guess I can think of a couple others, which is amazing really. There is also my Facebook community and my small town itself. And my readers at WordPress.

I am grateful to you all! I hope we can continue to bond as a community of migraine warriors, and shine on, always.

On Second Thought

Maybe the Pain Management Clinic

Will actually be beneficial.

I like and respect Dr. S

And she recommended this.

The last two weeks have been brutal

It is easy to give up hope

But I did fight, and got this appointment

And while I fear it will go badly

There’s no reason to be upset yet.

Hold on, hold on this pain will end

And Tuesday will happen and then.

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Depletion

No one can help me.

Not my partner

Not my parents

Not my friends

Not my children

Not my doctors

Not my dog

Not god.

Everyone is tired

At the end of the ropes with which

I tie them to me.

I am tired of asking for support

Favors, babysitting,

Rearrangement of schedules,

For people to be strong for me

When they have their own struggles.

I am the one who has to fight

This debilitating, invisible pain

The never ending battle for care

And doctors who believe in me

And right now

I feel as though I just can’t

Do it anymore.

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