Migraining ER Visit: Not Fun

Well, I've popped my migraine er visit cherry. And it sucked, as was expected.

The adventure started the previous evening, with a follow-up visit in the urgent care. I left the appointment exhausted and sore. My head started in something fierce when I got home, so I was reduced to medicating with narcotics, which didn't do anything. I took a pill to help me sleep and was lucky enough to find some rest.

I woke the next morning in decent spirits. My head was still achy, but not too bad, but I was feeling a little more spaced out than was normal. I started moving around, doing breakfasty things, got a look or two at the morning sunshine, and it was over. It started with the light, but then noise and of course then something smelly happened and the avalanche was coming down all around me so I laid down, slapped an ice pack on my dome and took one of the muscle relaxants I'd had to beg for the day before. 30 minutes later, no change. I took another. 30 minutes later, no change except for the crazy throbbing and stabbing and gnawing. I took two more. 30 minutes later I was sobbing hysterically with my head in my hands wishing for death. I was suspecting that the pill was a placebo, a cruel trick by a sadistic doctor. I checked rxlist.com, and I was already at the maximum daily dosage for my only medication on hand. My heart sank. Normally at this point, I am stressed by the pain, but I have an emergency remedy I can call in for relief. In this case, I had nothing. No pot, no muscle relaxants (that worked), no valium, no painkillers. How did I let this happen? Well, I'm poor, you see. I'm on disability and Guyver is on unemployment which pays our bills and not much more. I am on a waiting list to see a doctor who is "allowed" to prescribe me anything real. So, I currently have to settle for whatever the urgent care people will give me, which, so far, has been nothing effective.

Enough of the bitter. The healthcare rant is for another day.

Guyver got me breathing and moving enough to take me to the er. I walked out of the first one we tried in a panic; crying babies, and coughing people packed into a standing room only stiflingly hot waiting room that was ripe with the scent of suffering and cheap perfume was not my idea of a good time. We hoped that the next one would be better, and it was. It was 20 minutes away but it could have been another country. It was cleaner, quieter, and clearly had better ventilation. I waited with a blanket over my head to avoid the lights. I kept my 30 decibel earplugs in the whole time. They called me back and instructed me to put on the gown, open in the back. I raised an eyebrow at guyver and put it on over my clothes. I had a migraine, not a bullet wound. They never said anything about it, so I guess it wasn't a big deal. First, they gave me a benadryl/reglan cocktail. Made me feel ill, but my head still hurt. So they gave me dilaudid.

Immediately, I knew it was bad. I was nauseous and cold, sweaty and shivering. Then I started throwing up and didn't stop. I alternated dry heaving and drugged sleeping for 3 hours before they sent me home. "Why am I so sick?" I asked, "Am I allergic to dilaudid?" "No," the doctor assured me, "you are not allergic, but I've never seen anyone react this way." How reassuring. He wanted to give me steroids and I refused. They've never worked for me before, and I just end up sick and miserable. More. So, no thank you. He looked at me like I was an idiot and I dry heaved a little more for him. They finally sent me home and I dry heaved while being wheeled out of the hospital, through the lobby and all. Poor other people. I was probably a vision.

Guyver got me home and tried to get me in bed, but I felt sicker lying down and kept heaving, so I stubbornly refused. He tells me that he even tried pushing me over when I'd inevitably fall asleep between heaves. My sleeping self put my hands at my sides and braced against the couch, refusing to topple, scowling at him and possibly growling. I don't know if I believe that last part, but I laugh every time I imagine it, so let's go with it. He did take a picture, which he has promised never to show anyone. But it's funny. My lower lip is stuck out a mile, I'm all bundled up in my hoodie and blanket and slouched over my barf bin, which I am holding loosely in my hands. (Everytime someone tried to take that thing away from me, I'd snatch it back and retch some more, maybe glaring at them a little as if to say, "Get your own barf bucket, bitches, this one is occupado!" Maybe that's why they let me keep it. I seemed so attached. (Or maybe it was that they were sending me home uncontrollably vomiting up my own bile.)

Sorry. I really need to write that medical care rant.

So, guyver rigged me a pillow system so I could sit up in bed, then sat with me until I nodded off. He set up a makeshift table for me with a hamper, leaving me easy access to water and my barf bucket.

I woke in the middle of the night to pee, stumbled through my house on legs that weighed a thousand pounds, swaying with every step, disoriented enough that I couldn't tell if the seat was up or down when I sat and I nearly launched myself through the shower door when I jumped and swiveled to check. I woke in the morning still feeling heavy and weird. It faded by late afternoon. I have a weird rash on my hand and arm that had the IV, like broken capillaries.

They sent me home with a small amount of valium, which I will be hoarding obsessively since I have no idea when I'll get my next bad attack or when I'll get some more drugs that actually help. So frustrating.

This definitely wasn't my worst ER visit ever, and I even learned a few things. I have a sensitivity to dilaudid. If I ever allow someone to give it to me again it will be in small doses. The side effects were obviously horrible, but the drug itself may have merit. I think where it all went terribly wrong is that dilaudid is indicated for those who have an opioid tolerance. I have no tolerance. It was a simple miscommunication, I think. When they asked me what I had taken in the past 24 hours, I said that I had taken narcotics, a small handful of muscle relaxants, and a few sleeping pills and it hadn't touched my pain. I think they thought this was a regular treatment for my head. In fact, it is not. I so rarely take any narcotics that I tend to fall asleep after looking at a half of a dose. But this pain ignored the drugs completely, wouldn't even let me sleep it off. So, lesson learned, my pain has a drug tolerance, I do not.


Sidenote: Apparently, the worse I feel, the more polite I am. I was pleasing and thank youing everyone in the hospital and I think I ma'amed a nurse who was younger than me. I told guyver how wonderful he was and how much I loved him so many times, he was really worried. Not that he doesn't normally know that I think he's great and loved and all, I just express it more vehemently when I am really sick. Like most people do when they are drunk.

More...

Triggering Myself

I'm doing my best not to make myself worse. I carry a hat, umbrella, earplugs, and sunglasses with me everywhere I go. I avoid or limit foods that I know to be triggering, so only a few spoonfuls of rocky road ice cream, if any, instead of the small mountain I used to load in my bowl. I do my best to protect myself, but I can't avoid every trigger. In fact, I actually meet a few head on.

The whole inspiration for this post came to me this morning when I was brushing my teeth. As is usual for me, I loaded up the toothbrush, gave it a little squirt with water, and started brushing. I look up when I brush my teeth, to avoid drooling on myself. I look up. Straight into the light above the mirror. I gaze vacantly into the light as my mind wanders and my teeth get brushed. I brush my top teeth, I contemplate existentialism, I stare into the light without even seeing it. I brush my bottom teeth, I compose our next shopping list, and continue to vacantly stare into the light without seeing it. My head starts to hurt and I think, is this toothpaste triggering? Then, I realize, I am staring. Into the light. OW.

Another way I am triggering myself is by unconsciously clenching my jaw. When I'm angry, or lifting something, or growling at my dog in play, or concentrating particularly hard to get something just perfect, I tend to "bear down" with my jaw muscles and I don't think it's a good idea. I don't grind my teeth at all, and I haven't noticed any direct pain from it, but it can't be helping.

Spicy flavors, tart flavors, even very sweet flavors can trigger a headache. Anything strong, that my tongue initially recoils from, will usually result in some head pain. I can do any of these flavors if they are mild, and spicy foods have actually given me some pain relief, but too strong or too much and I'm in trouble. I don't always remember this, unfortunately, until after my taste buds have gone, "WOAH!", and by then, it's too late. I love to put tons of hot sauce in my ramen soup. I like my lemonade tart. I love a moist, fudgy, uber-chocolaty chocolate cake and salt and vinegar chips. My head, not so much.

My own laugh hurts my head. This makes me so sad, I can't talk about it without getting choked up. I've always been silly and funny and giggly and I'm known for my laugh. It carries, it's infectious, and I tend to thrown my head back, open my mouth wide, and have at it with the uproariousness of it all. Unbridled joy. Unrestrained. Unimpaired. To be in pain as a result of a little unselfconscious happiness... is kind of devastating. It's a cruel joke. It makes me angry. I feel betrayed by my own body. Other people notice it, too. When I only snicker a little, or simply smile in response to something funny, it's not of the norm and it concerns those who know me. Well, those that knew me. I don't think anyone really know me anymore, including myself. My pain is changing me everyday, and sometimes I barely recognize myself. Sigh.

The triggers don't always stop me, though. My boyfriend and I take our dog to the park even though I know I'm going to leave with pain. Dogs bark, the sun shines, people talk and yell (and wear WAY too much aftershave), and the seating is less than comfy. But my dog has a blast, my man gets to flex his social muscles with the other dog owners and I get some time out of the house, and the joy of watching them both in action. It's good to get out, even if it hurts. Other activities I enjoy that hurt my head are taking slow walks, going to the library, and spending time with friends and family. These simple activities are always trigger-riddled and always end with an increase in pain, but it's important to me to maintain some sense of perspective. I weigh the consequences, like, should I miss my brother's game, or have my pain jump up a few points for a few days? Can I make it to the party for an hour and just rock the icepacks when I get home? Which is stronger, my head or my fear of missing it all?

Reminded of Cindy McCain's widely criticized comparison of her migraines to her husband's torture as a POW, I consider this question: If my pain was inflicted by an outside force, would I bow to it? Or would I stand defiant? Would I bear all it could inflict with stoicism and strength? And if this outside force had the same tendencies, to hurt me even more if I was having a good time, would I surrender into inactivity and depression? Or would I stick out that good time as long as I could, giving the finger to my torturer as he waited in the wings for his entrance? Some days, it's nothing but defiance that gets me out of bed. That makes me sort of proud.

To sum up: I can't avoid all of my triggers. Most days I feel like I can't avoid any. I am afraid of the pain, but I am more afraid of wasting my life. So I keep moving, and I keep triggering, and I have pain but I have a life in spite of it.


More...

Binge Cooking

Being in pain makes mealtime a challenge.

Guyver (New nickname for the boyfriend!) tends to eat whatever is easiest, and that is too often burritos from the supermarket next door. While I am grateful that we have a market so close, the proximity does make it hard to resist the temptations of an easy meal when my head is throbbing and I keep crying at the latest talking baby commercial. (I don't know why.) We've had this mealtime problem, and subsequent argument many times. I say we can't afford to be buying burritos for every meal and he retorts that no one wants to eat ramen all the time. I remind him of the stove, fridge, pots and pans just a room away. If he accepts my challenge, he will use every dish and utensil in the house making spaghetti (True story.) and then regale me with tall tales of adversity and bravery in the face of boiling noodles. Between mouthfuls he details every ingredient and stirring technique that his genius probably invented on the spot. Once he's finished his gourmet meal he lays back on the couch and promises to do the dishes later. Which never happens. Seriously. We've had standoffs. I am possibly pathologically stubborn and he is the poster boy for adult ADHD. This has led to our kitchen being a angry hazardous waste zone for weeks until one of us finally caves/focuses long enough to get it done.

But there's good news! We've grown as people and are tired of tantruming at each other. We agree that I cook more logically and consistently well, but can't be counted on to shower every day, let alone cook a healthy meal. Thus the concept of binge cooking was born.

Cooking large meals and freezing liberally has proven to be the easiest way for us to eat healthily. My kitchen adventures usually start the same way: what ingredients do we have, and what could we get for cheap? Once I have my "recipe" and ingredients list, I organize. The more prep I do, the easier it is on my body come cooking day. A few days preceding the day I plan to cook I make lists, double-check the pantry, reference allrecipes and recipezaar, and make sure all the supplies I need are clean and where I expect them to be. The actual day of cooking is never set in stone, though, I always give myself a range of days to choose from, and plan ahead of time. Then, if I wake up on a possible cooking day with a killer migraine, it's not a big deal if I do nothing in the kitchen all day but refill my water glass. And if I have a surprisingly good day a day or two before I had planned to get my hands dirty, I push it up! Can't waste those spoons, now can we?!

The cooking takes anywhere from three to eight hours, the cleanup and packing another two or so. By the end of the night my head is throbbing, my back is aching and I feel a little delusional from the effort. This last binge, I fell asleep with a migraine that night, it woke me a few times, which was new, and I woke with it in the morning, which is really rare for me. But I rolled with it that next day: rocked the ice packs and spent the next 18 hours focused intently on hulu to keep from freaking out over the pain.

These cooking binges always hurt, but I don't mind the pain as much when I've got something to show for it. Not having to cook for the next two weeks is worth it. I try to keep the fridge and freezer stocked with lasagna, chili, bread, casseroles, enchiladas and anything else my little brain can dream up and google.

Binge cooking has saved our relationship, and my sanity. That and the dishwasher.

I'm going to continue this post, focusing more on the economic reasons behind cooking in bulk and even a recipe or two over at Focusing on Reality, my non-head blog that I largely neglect. See you there! More...

Context

This morning my sheets smelled like evil. About the time I went to bed, Guyver went to get a rubdown from our local massage therapist. (Like, super local. Next door. It's odd how many times we've ended up living with or near massage therapists. Has there been a migration in the past few years?) He came back home, pleasantly sore and blissfully ignorant of the danger that clung to his skin. He took a quick (and admittedly careless) shower and got into bed, just barely rousing me from my deep sleep. I was just awake enough to mumble-boss him to get his own blanket as I could still smell the massage lotion on him. I covered my face with my own blanket and fell back into sleep, temporarily shielded from the scent of liniment and lavender. I woke with my face buried in my pillow and as soon as I moved, I smelled it.

It made me gag, though a part of me could recognize that it was faint. It was making me feel sick, angry, and very sensitive. Lights got brighter, noises were sharper, I felt hot and stifled, but my feet were freezing. It was the standard buildup for me. Guyver is really getting used to my patterns because when I flipped out at him for something silly, he asked me what the real problem was. "Well let me give you some context!" I spat, all righteous with my bad self. And after a minute of nagging and rambling on about missing forks, soap not being on the wire rack where it goes, and other petty things of this nature, I finally got to it, "...and the bed SMELLS!" His face instantly went from annoyed to sympathetic and I started to cry, relieved that I had finally gotten to the point and that he understood. He immediately helped me form a plan of action for cleaning all of the bedding without having a working washing machine. (It broke a few days ago. It's a problem.) He reassured me that if it all went terribly wrong, if my head exploded and all of my spoons fell out, he would carry it all to the laundromat himself if he had to, through the snow, uphill, both ways. Then he hugged me until I let go. He's a really great guy.

There really is no moral to the story. It's just another anecdote about how easily my day can go wrong, and how lucky I am to have someone to help me bring it back around to right. The last comforter is in the dryer now. I'm tired. But I'll sleep in a clean, unscented bed tonight and maybe tomorrow will be better.

More...

A Glimpse into my World on a Bad Day

Today is a day in which I constantly fight off the urge to smash something. First, my head hurts. I don't really want to get into detail about it. Every time I try, I end up pounding on the keyboard in frustration. Nothing has changed. Besides my entire life. I think I'm going backwards through the stages of grief and have landed back on anger.

We're having computer issues. We have two laptops, one is MINE and the other is an asshole. MY laptop refuses to install and use our new internet source, which means I've been forced to use the asshole lately. The asshole seems fine. It starts up quickly, installs and runs programs easily and plays multi-media like a dream. HOWEVER, the asshole has a few keys that are totally non-responsive. Like P. And tab, the left shift and 90% of the number keys. Using the on-screen keyboard provided by windows, I have full functionality on the asshole, it's just extremely irritating to break the rhythm of my typing groove to have to whip out the onscreen keyboard, or to use the arrow keys and delete instead of backspace when I make the inevitable typo. I tried powering through it and fixing mistakes later. It made me feel totally unbalanced, to look at my paragraphs of half-formed words underlined angrily in red. I've started probably ten different posts on the past few days and deleted them all, in or close to tears, totally unable to focus on whatever subject I was on for all of the typos and interruptions in train of thought.

So, I've pulled out MY computer and a usb drive. I'm typing this up, gonna slap in on the drive, plug in into the asshole, connect to the internet and behold: A blog post!

I've also taken some valium.

I've been checking out some new blogs lately. I'm branching out a bit from the headache and migraine crowd and exploring the world of chronic pain and disability. I've made some additions to my blogroll, but am hungrily looking for more. So, if you know of someone or something that I'm missing, let me know.

I'm getting more irritated with the superficial, materialistic, mass hysteria-like consumerism that has infected this country. Also, ableism is really pissing me off. Britain has admitted to kidnapping children. Other dog owners at the park have taught their animals no manners. I live in the middle of a big city, and I have sensory sensitivities. Today is leaf-blower day. I'm having holiday anxiety already. I keep taking it personally when I hear someone say that they think there shouldn't be a public option, as if they are telling me that I, personally, do not deserve medical care. I really hate these bathtub commercials on tv all the time that are supposed to be more accessible (the ones with no step to get in and a door). I can't stop thinking about what would happen if the tub clogged and wouldn't drain. I haven't bothered to research whether they have a contigency plan for just such an event, I'm just being blindly irritated at this point.

It's one of those days, like I said.

My clothes washer is broken. No word yet on how long it'll take to be fixed. Luckily my parents' house is not far, and they have issued an open invite to launder with them.

I've already declared to all interested parties that I am not doing any kind of formal Thanksgiving dinner. I have relatives who will be attending who wear heavy perfumes in spite of my issues. I have suggested a quiet brunch with my parents on the morning of, since my mom has a sentimental thing with holidays. I'll be back home long before football starts. If I'm feeling good enough, maybe we'll hit the dog park, or take a walk. Holidays are a great time to do mundane things, because everyone else is too busy cooking and family-ing to get in my way and make everything all crowded and noisy.

I just started crying for no reason. Sobbing, really. I think it may have been the leaf blowers that triggered it.

Aaaah... The valium is kicking in. I think I'll switch over to editing a more cheerful post, since my rage is slowly draining away.

More...