Wednesday, December 30, 2009

X-mas Recap: 2009

All December long, I was feeling the doom and gloom of the impending holidays. Redefining almost every aspect of my everyday life has been hard, but since it's done every day, it's more of a dull pain than the searing, brain-melting, third degree, labor pains I feel come the holidays. Only once a year does my entire extended family gather for a six hour intensive social and since there have only been two of them since my headaches started, I am still actively mourning the loss of my former experience. This year, finally, I was able to enjoy myself again, just differently.

The old way of celebrating was very wasteful. I would bounce about, talking constantly, eating bad food and drinking bad drinks. Christmas eve, christmas day and new years eve would all be over-scheduled. Parties and dinners and shopping and working overtime to pay for the shopping would really wring me out, even with the endless resources I had then. It was a good time, sure, but my relationships were high input, little depth, my life was scattered and frenzied, and the eating and drinking habits didn't do much for my general well-being either. I wasn't on empty, but I was definitely letting the tank run low. And for what? I don't miss those people I don't see at all of those parties. I miss working, but not like a corporate slave. And the eating and drinking? I know what I can have and what I can't and I weigh the consequences of each bite with a sometimes frustratingly sober mind.

Christmas eve was quiet. We had an early crab dinner with the folks, and were home by 7:00. I was up bright and early on christmas morning to head back to the folks for lox and bagels with some grandparents. No onions for me, sigh. After this, I went home and laid down for two hours, one with a scarf over my eyes. I drank plenty of water and tried to keep my mind quiet. Then we visited the in-laws for a bit. The earplugs went in. There was a game on, very loud, and people shouting to each other from different levels of a townhouse. I lasted for an hour before I started feeling twinges of irritation. I let my boyfriend know that our time was short and he started making leaving noises, which prompted everyone to bust out with their cameras (with strobing flash, of course), to make sure they had adequately memorexed the moment. I just closed my eyes when I needed to and waited patiently, practiced my breathing and smiled whenever someone spoke to me. This section of the family knows little about my health and I didn't find family time on christmas day to be an appropriate venue to educate them. We made it out after about an hour, and stopped back at our house. I medicated and slowly organized items for our final stop, christmaspalooza at my uncle's new house with 30 of my closest family.

It was really loud there. Music in the one room, yelling and horseplay in another, upstairs, a few relatives had an impromptu jam session on the guitars and drum kit, complete with amplifier. Everyone talks at once, which results in everyone semi-shouting at once and I stood in the middle with my earplugs so far in my ears I think they touched, and reveled in the fact that I was there. It felt like trial by fire; my flight or fight instinct was kicking in and I was fighting for the right to party with my family. I made it through, though, and didn't shout or cry at anyone.

A few days later and my head still hurts quite a bit. I've also picked up a cold. I barely got out of bed at all the last few days. Though my body feels weak and beaten up, my heart and my mind are so full and satiated from all of the positive energy I had around me. I keep laughing at the memory of my entire family applauding wildly but nearly silently when I walked in the door late. Everyone loved my baked goods, and were all thrilled to receive them. I acquired a few incredibly thoughtful and perfect gifts that have left me simply giddy. I loved watching the faces of others whose gifts delighted them. I could almost see them as children, laughing and clapping over a new toy.

The pain I'm suffering now is totally worth it for the memories. But I am thinking it's going to be a quiet new years.


Saturday, December 19, 2009

Blogging in Tandem

I really enjoy blog carnivals. Interesting topics, talented writers, and varied perspectives combine and the result is a tasty stew of information. I submitted to this month's Migraine Blog Carnival and was featured alongside several other bloggers who all took on the theme, "Holiday Stress".

Check it out and you will be treated to intelligent commentary about chronic illness and the holidays. And my post is there, too. More...

Thursday, December 17, 2009


I was annoyed at Thanksgiving this year, so I had to get a little distance before I could write up the obligatory post. Here is what I am thankful for, a week before Christmas:

1. You. I write about all my head drama and you come here and read it and sometimes even comment and I appreciate it so much. I get shy sometimes trying to comment back. I know I'm weird.

2. My partner. For his friendship, his love, his help and his very presence.

3. Family, of course. I have a large, local extended family and they are all such interesting people, and so kind. I love them all so much.

4. Knowledge. Some days, input is the only way I stay sane.

5. Drugs. For the one that lessen my pain, the ones that "prevent" my pain, and the ones that keep my bowels moving when the pills have slammed them shut.

On the flip:

I am not thankful for people who wear gallons of perfume, then act like I'm being a jerk because I avoid them.

I am not thankful for others' expectations of me and what I "should" be capable of.

And, I am not thankful for the rapid approach of christmas. I have a feeling I'll be writing another rant about how things went crazy with my head and no one understood. I'm tired of that rant.


Sunday, December 13, 2009

Bracing Myself for the Holidays

There is a good chance that my holidays are going to suck. Here's why:

I can not help my sensitivity to fragrances. And I know I complain about them a lot. But, they make my life unbearable a lot. Perfume, cologne, aftershave, lotion, makeup, body wash, hair care products, scented candles, potpourri, incense, and air fresheners all make my head hurt. (And can I send out a special shout-out to the motion sensitive air freshener I've seen on tv? If I walk into someone's house and one of those scent snipers shoots its poison anywhere near me, I'm throwing it of the house like a live grenade.) It seems like everyone brings out their smelly candles and favorite perfume at this time of year. And I end up feeling like a jerk for being sensitive to it.

If the clouds of perfume wafting off of my grandmother like napalm haven't ruined my appetite, the food of the holidays threatens to take me down. 'Tis to season to be a glutton and eating a large amount of crap food never makes me feel good. As hard as it is to turn down another crescent roll, or to not eat one (or more) of every kind of cookie on the table, or to avoid the snack table altogether, it's worse to have to leave early. So, no cookies for me.

I may have mentioned a few times that earplugs: mandatory. I'm also trying to think of creative ways to xmas up my noise canceling industrial earmuffs, just in case it gets extra loud. If I had money I would by some small santa hats and affix them to each muff. Maybe I'll just cut up some snowflakes and tape them on. Of course, there will be pictures taken, so I'll be weighing the embarrassment and comfort factors and I'll let you know who wins.

I wish I had a cute winter hat with a brim. Ball caps and beachy bucket hats won't match my outfit. But, blocking overhead lights has become very important, so I'm hoping to work something out.

I'll have my sunglasses with me at all times. Christmas lights are lovely, but can be bright. Worse, they are often blinky. I simply can't have anything blinking in my eyesight without feeling ill, confused, and getting all triggery.

I bring two bags with me almost everywhere we go now. My purse, which holds all the normal stuff (plus a small headache kit) and another bag with emergency stuff, like a scarf and mittens, the headphones, and icepacks. I don't always need something from my extra bag, but when I do, it saves the day, truly.

So, be prepared is the moral of this story. And be kind to others who may have just come in from the cold and blinking lights.


Wednesday, December 9, 2009

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, 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 my boyfriend 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.

My boyfriend 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 my boyfriend 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.

My boyfriend 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, my boyfriend 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 my boyfriend 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.


Wednesday, December 2, 2009

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.