Migraining Like Woah Over Here

Life's been hard lately. Botox, then a lingering cold have left me mostly bedridden. Neck weakness, coughing, and blowing my nose until my ears pop are all migraine triggers and boy, have I been migraining. I really want to go outside today. But I've been saying that every day.

How do I deal with this quality of life? Dissociation and living in the moment, enjoying the little things as if they were huge and stalking every chronic pain and migraine community I can find. So, shout-outs to Hulu and Gamershood, Livejournal, all the babes at the Chronicbabe forums, and everyone on my amazing blogroll, which you can check out down there on the right. Thanks for keeping me alive! More...

Sweet Little Lies

"How are you?"

Such a loaded question.

I've made it my habit to lie when asked how I am. I say "fine", or "fabulous" if I'm feeling sassy. I don't like lying, even if it is a white-ish lie, and not meant to hurt anyone. I like honesty. I think it's important to know the truth in life, even if it's awful. But, I don't always want to be the harbinger of doom and gloom, so with the oh-so-innocent "how are you?" I try to keep it light.

If I am honest, it's still usually a kind of twisted-positive, something like, "I don't feel like killing myself today and it's awesome!" Which, I could probably work on my phrasing with that one, but it really gets the point across, for the four people I dare say it to.

I recently spoke to a woman I've known since I was a kid. She has struggled with chronic pain for longer than I have been alive, so from the beginning of my ordeal I've always been dead honest with her. She asked how I was and I responded without thinking, "Well, my migraines are the same, maybe worse in some ways, but I'm learning to cope with it better!"

It felt so good to be able to say that unselfconsciously. I had no idea how much this was weighing on me. I am not fine, and apparently saying so constantly, through gritted teeth and a painted smile, has been wearing me down and making every interaction feel like a big stressful performance.

But there are some very good reasons to lie. Some old high school friends that I haven't communicated with in 15 years found me on facebook and it immediately started with the "What have you been up to?" and "What are you doing for a living?" thing. If I answer honestly, it inevitably becomes the focus of the conversation because how can you not quiz someone who has a migraine all the time? I get it. It's unusual and therefore fascinating or subject to disbelief. But I don't have the energy to explain myself to everyone on facebook. I was a very social person, in my former life. I never thought that would come back to haunt me. So, I've taken to ignoring the question altogether, saying something funny about my dog, naming all of my hobbies, or saying that I am unemployed, "like half of America".

Besides avoiding the awkwardness and spoon draining explanations, lying also protects me from being the subject of gossip. I know how people are. It'll be, "Did you hear about steph?" and "She's got some crazy migraine thing going on," neither of which are terrible things to say, I just really hate the idea of people feeling sorry for me, or people I haven't told about my migraines asking about them.

My pain is personal, and I don't share it freely.


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Ma Petite Révolution

I never did post a follow up to my Drama at Denny's. They wrote me back. I can't find the email. But it wasn't exciting. It was the very standard: Dear Sir/Madam, We sincerely apologize for any inconvenience you suffered at YOURTOWN'S Denny's. We have forwarded your complaint to the appropriate vague blablabla. So, I didn't have much hope.

Well, color me surprised when we risked our lives (YES) to brave the horrors that dwelled within MYTOWN'S Denny's and found that the hostess was significantly less stinky. And wouldn't come within 15 feet of me.

Who knows if the official complaint made it through the channels and was actually addressed but it doesn't matter because it was obvious to me that my favorite waitress-buddy had dealt with the problem directly. If the hostess was reacting to an anonymous complaint she wouldn't have avoided us as much as she did. She knew I was sensitive and she was trying to accommodate me. After I got over my initial guilt reflex I realized: this kicks ass. She was still pleasant, greeted us warmly and made sure we didn't need refills, just like usual, but she just stayed on the other side of the room at all times. And her perfume hardly bothered me at all. I call it success.

Around the same time I filed my Denny's complaint, I also wrote to my city's library. I asked if there was a delivery service for those in need, and if there were any exceptions to the "no online ordering of dvd's" rule. Delivery would make it easier to get and return books when I'm feeling badly, obviously, and the dvd ordering would make it possible for me to see anything they have in their inventory. An able person with the time and resources to go to any of the many branches in my city would have no problem borrowing any movie they wanted, but since I can barely make it to my local branch without keeling over, a little flexibility in the rules might have made my millennium. But no, I got a very polite, regretful response informing me that there is no delivery, and no rule bending. I was disappointed, but unsurprised. Their budget has been cut so much that a few libraries have closed and all have trimmed their hours. It's sad. However, the PR person who emailed me back suggested trying a county service for book deliveries, so there may still be hope on that front.



Next: I've started emailing networks that air shows online without captions. I'll let you know if I get any feedback.



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Botox

It was an adventure. A long drive to the local metropolis, which, of course, involved getting lost. We finally arrived, quite late, and the scent hit me in the elevator. I covered my nose and mouth with my sweater and braved the funny looks from the young and unencumbered yuppies in the hallway. They don't know any better. It got worse as we walked down the hall and reached an apex of terrible as we entered the office. I wanted to run. But the hope of botox kept me stubbornly planted. In their defense, as soon as the office manager realized I was sensitive to scents, she immediately got rid of the oil diffuser and thousands of potpourri bowls scattered around the lobby and doctor's office. But it was still saturated, so I smiled at her to express my gratitude and immediately put my sweater back over my face.

I made myself comfortable in an oversized chair while my boyfriend took care of the medicare shenanigans. Randomly, an intoxicated woman walked across the waiting room, knelt at my side and started caressing my knees consolingly. "Are you alright?" she asked me. It took me a moment to regain my bearings. "I'll be ok," I explained, "I just have a migraine." She made a sad face, and continued rubbing my leg. If she had been a man, I would have gotten irate. But, I was obviously a new specimen for her, and in her narcotic (I assume) haze, she kept telling me how sorry she was for me and how difficult all this paperwork can be. I said thank you and wished she would go away. She didn't. Then she slurred something about "coming here for botox" and "isn't that awful?" I had no response. She silently kept rubbing my knee until a hundred years went by and the nurse needed by authorization for something. "SURE!" I exclaimed, and (figuratively) leaped up and ran to the desk. I gave my info and sat back down and willed the woman to stay in her seat, back to which she had managed to wander. She was obviously coming from a place of compassion, so I didn't want to yell at her, but she was also coming from a place of vicodin (assumption) and I didn't need her druggie love. There is no touching.

So, paperwork shenanigans completed, we were finally called in. The doctor was nice, an older man, good humored and attentive. We spoke for a few minutes and then he had me lie down. He was quick. It took him about a minute to do my whole head, minus the short break he took to refill the syringe. It was less painful than the occipital block, I'll say that, but it was still fairly uncomfortable. He did several in my forehead, a few on each side of my head and a few in the back of my head and in my neck. I forgot to count, but I am guessing that I got somewhere around sixteen shots total. It was occasionally crunchy, which makes my stomach turn. There were no immediate effects, besides some light tingling at a few injection sites. When we were done, we sat for a few minutes and talked.

And it was going so well.

He informed me that I don't have migraines, and that I have an abnormal muscle something or other that is triggering daily headaches. It can't be a migraine if I have it everyday. He offhandedly admitted that light and smell sensitivity are common with migraine, but if I tried all of the migraine drugs and nothing helped, this also indicates that it couldn't possibly be a migraine.

I had just been stabbed in the head repeatedly, so didn't have the energy to argue with him. But I really resent a doctor I went to for a service giving me an unsolicited diagnosis that isn't even founded on the most recent information in the field. I um-hummed at him and nodded vacantly until he was done speechifying about how my scoliosis is the source of my headaches and if we were to fix that -how that would be done was vague- I might still get a migraine or two a month but that my daily headaches would be gone.

Call me a cynic, but I doubt that my mild scoliosis is the big evil that's causing my constant head pain that started suddenly after SHINGLES.

I have half a mind to write him a letter. (Also, he corrected my grammar while shining a light in my eye. He's lucky he left with all his teeth.)

Finally, we left. Walking back to the elevator, I noticed that one spot he had stabbed, slightly higher than the midpoint between my temple and eye, was starting to sting. Before we were back on the freeway it had started to throb, and less than halfway home, the stabbing began. I distracted myself by imagining the things I would do "if I was better". It got silly once the drugs started kicking in. (Babe, I'm a go hiking EVERYWHERE cause I LOVE TREES.) Once I got home, I iced the sore spot and it quickly went from an eight to a ten, so I put the ice on the back of my head instead, which was fine. It took about six hours to go back to normal, which is relative because I'm pretty drugged at the moment, so my perspective of pain isn't exactly the most... reliable.

I'm really interested to see if this changes anything. But lately, I find disappointment to be too high a price to pay for hope. So I want to maintain a detached interest. Of course, it's not working.

I can't find acceptance with a life saturated with pain if I am always getting my hopes up and being let down. It hurts too much. I think I'm more scared that it'll work for a while, then never again. I'll get a taste of freedom before I'm plunged back into the dungeon. I know I should appreciate any break I get, but I feel like I die a little every time I have a good day.

Sometimes I feel very old. Aged and tired. I felt like a fraud today when the nurse commented on how young I am to be on medicare. "Heh," I thought to myself, "I only look young."

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FTW

Even the silence is deafening today. I've got full-size earplugs in, as opposed to ones cut in half or thirds, and sounds are still jarring, and my normally unnoticeable tinnitus is driving me mad. I bullied myself into getting some chores done, even though I am WIPED by the activity of the last few days. My weekend was really nice; hanging out with understanding and tolerant friends, and a little quality time with the family. But I did a lot of ignoring of warning signs and covering of symptoms with drugs. I pushed myself by walking and laughing. I sat under uncomfortable lighting without my hat on out of sheer stubbornness and the totally embarrassing and vain need to "look normal" at least occasionally. So, I knew this was coming. It doesn't make it easier, but I at least know the source of the pain. I don't have to wonder if it was something I did wrong because I know it was. I'm totally giving my head the finger. And my head is punching me in the face back. Whatever, I still win.


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Feeling Trapped

We all need to vent, right? Well, I try to keep the majority of my outbursts away from here. This is where I talk about my health rationally. If I let myself bitch and complain every time I came here, this would cease to be a safe place. I would no longer even have my pretend control over the situation and my head would explode, maybe even really. But every now and again, I have to let one through. Even though it embarrasses me a little, even though I hate admitting that I whine and feel helpless and useless and am only pretending to be okay with the possibility of living the rest of my life in pain. Because, I bet someone else has felt like I do. That thought overwhelms any self-conscious crap my inner teenager is brewing up and nudges me, nay, FORCES me to expose my most private bits. Because no one should ever feel alone.


Yeah, you heard me, I said nay. Also, I'm not showing anyone my literal private bits.


Enough. All this build up is making me more nervous. Without further stalling, here's a post from my private journal, circa last week, complete with dramatics and pouty faux html.



I'm fighting back tears at the moment. I want to go outside. I want to leash up the dog and stride out the front door with confidence. But I can't.

First, the sun is out. Yes, hat and sunglasses, long sleeves and an umbrella, just in case. I used to be able to walk out the door barely dressed and be able to survive for hours without a shred of discomfort.

B, there are people smoking next to my front door. Yes, I could hold my breath as I walk as quickly as possible upwind. I'm annoyed that I have to. I don't miss smoking. At all.

Tres, my babysitter is unavailable. Meaning, my boyfriend is busy doing something else and I don't feel confident that I'll be able to walk to the store and home with groceries, or even walk the dog, pick up her crap and walk home, without it sucking horribly. I need a babysitter to bend over for me, take the dog if I can't stand the feel of her pulling on the leash, and generally give me a focal point through the din of leaf-blowers, car exhaust, the wax and wane of the thumping bass of the stereos of passing cars, the glare of the sun between the trees, the cloud of barbecue smoke we somehow wandered into, and the suddenly complicated task of paying for groceries. Without a guide, I feel lost and stumble my way home, shaking and nauseous, in pain and SO frustrated. I lose joy in being in the world. I have no reason to celebrate the coming of spring when all spring wants to do to me is beat me into the ground with all the sunshine, pollen and fresh cut grass. But with a babysitter, a guide, I can close my eyes and my mind off, focus on following the back in front of me. I can trust that back to get me through it, to get me back home. I can trust that back to support me if I stumble, or to be a place to rest if I am weak. I take that back for granted and right now I want to go outside and that back is busy doing something else.

Fourth, I have nothing to wear.

/tantrum




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A Trip to the Dispensary

Cannabis dispensaries are popping up all over in my uber-urban neighborhood. So, I checked one out.

It was a suite in a medical plaza, totally innocuous except for the security guard. I walked up the stairs and he asked for my card and my ID. I provided both. Then he escorted me to the door and knocked for me, three times quickly. The door opened from the inside and there was a man, smiling at me. He invited me in and handed me a clipboard with some waivers to sign. I sat in a generic waiting room chair in a dimly lit, yet otherwise generic waiting room. They had a really nice television that was unfortunately playing JAG a little too loudly. I initialed the forms in a hundred places to acknowledge that I would not share the marijuana, sell the marijuana, or take photos of their marijuana. If I violate these rules, there will be no more marijuana for me. There was something about financial assistance, which I completely forgot to ask about. I finished signing everything and was told to wait. I waited. But not long. I didn't even have time to ask someone to turn down JAG before they called me back.

I was led to a back room that was occupied by another smiling man who was standing behind a small counter, apparently holding court over the dispensing. The counter was bare except for a digital scale and an adding machine style calculator. In a corner there was a chest-high refrigerator with a glass door, stuffed full of colorful packages of various sizes with writing too small to read casually. To the right was a six-foot display case filled with about forty large, square, glass jars of marijuana. It was a rainbow of green with highlights of orange and white and purple, and they were all neatly labeled with creative names like Sour Diesel, Maui Wowi, and OG Kush. I specified to smiling man number two that I needed something for migraine. He made a recommendation. I asked about edibles. He made another recommendation. Then he pulled out something organic and my inner hippie clapped her hands and jumped up and down with glee. After a little bit more discussion, the transaction was made and I was on my way with a nondescript white bag of potential.

This was my first time visiting a cannabis dispensary. Previously I'd gone through a delivery service. The convenience of having someone bring my order to me is beautiful. I don't even have to get out of my jammies. However, with the particular delivery service I used, it was difficult to find a favorite strain because their stock changed so often. And even if the establishment had something I knew I liked in stock, there was no guarantee that my delivery person would. We very rarely got the same type of marijuana twice. But for the most this wasn't an issue until they were flooded with a certain sativa that made my head scream. I couldn't get anything else from them for a week; that was all any of the drivers had, besides the the stuff that costs so much we wouldn't eat if we got it. (They always seemed to have plenty of what I couldn't afford.) We've since learned to have a back-up plan.

It's not as easy as it sounds to self-medicate. Some types of pot make my head much worse, and smoking too much in one sitting can make it all nice and explodey. But if I take it slow, with small, frequent doses, it improves my productivity more than I thought was possible when I was on the standard pharmaceuticals. Yes, I sometimes get the giggles, or lose cognitive skills after smoking, which can embarrass me and make me feel self-conscious of my choices. But then I remember experiencing what we lovingly call a soma coma. And being impacted. And the constant heartburn I had on that one drug. And how my skin broke out like crazy on that other one. And that six months (a year?) that I was on oxy-something or other that I have very little recollection of. These side effects were uncomfortable at best, torture at worst, but I would withstand any of them if they made a dent in the chronic migraines. They never did. I'm not anti-pill, really. I'm open to trying, I'm just anti-futility. And I refuse to live in that constant state of sedation and constipation again. Luckily for me, with marijuana, I don't have to.








**I'm absolutely NOT judging anyone else's medical/pain management choices and any negative views of treatments are my own opinions that are based on my personal experiences.





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How to Paint Your Nails with a Migraine

I had a craving for purple. But the smell. THE SMELL! So, I made it work.

This is the same scarf that got me home after my stinky coat adventure. All hail the sacred scarf of scent stifling.


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Pretty Things

It was a late night. I visited with friends, watched antm. Acted a fool and cackled with joy. My head hurts now. I may have made the sore muscle analogy before, and if so, forgive me my redundance. But there's something different about my migraines after a good time. It's almost like the endorphins carry me through.

I still have the nausea and soreness and skull pounding torture, the dizziness and olfactory auras (Do you smell poo?), visual distortions and mental impairment. What I seem to lack is the irritability and depression, the self-flagellation and disappointment that can accompany my everyday migraines. The laughter tides me over, as corny as that sounds.

The same goes for photography. I like to go for walks and take pictures of whatever catches my eye. Then, when I'm inevitably less mobile later, I plug the memory card into my laptop and edit and sort through the images of outside. It knocks the pain back a bit, lifts my mood substantially and gives me something to post on my non-head blog (which I'm considering merging with this one. It may be time to stop compartmentalizing so much.)

Maybe some sort of productivity is the key. I've been teaching myself to sew and it is amazing. I'm focusing on restructuring old clothes, in the spirit of frugality and recycling, and have already completed four projects, two of which I can even wear in public! It's liberating to clean out the old clothes I don't wear, rip them to bits (not really) and stitch them back together into something new and interesting. Learning a new skill is a self-esteem boost, (not to get all after-school special on you, but I could use some extra sometimes), and the results are undeniably awesome. New clothes!

I am so grateful for my many distractions, my many pleasures in my life. I have a lot of pain, but I am lucky to have enough love and fun and pretty things to keep me smiling.

I hope you do, too.


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Pictures I Made

Made a little migraine art. It was WinnyNinny PooPoo over at No Extended Warranty who got me going again, with her new blog: Illustrating Illness.

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