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!
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Wednesday, April 28, 2010
Friday, April 23, 2010
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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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.
More...
Friday, April 16, 2010
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.
More...
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.
More...
Friday, April 9, 2010
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."
More...
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."
More...
Monday, April 5, 2010
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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