My boyfriend's been calling me Deafanie lately. Because of the earplugs. I think it may be the best nickname I have ever been given. Except maybe for Bubbles. Remind me to tell you about that one, sometime.
_
I randomly told someone I had had acupuncture. I haven't. It was accidental, and I can't quite explain why the sentence came out of my mouth (awkward on the spot stranger asking about illness/disability? Sensory overload at Denny's? Sugar rush from the pancake puppies?) but I couldn't likely take it back once I'd said it because I was already that lady with the migraines and I didn't want to be that lady with the migraines who lies or argues with herself or is dumb or drunk or whatever it is that makes people occasionally make the crazy-face at me. So, now there's a woman walking around thinking I've had acupuncture when I haven't and I'm a little worried she'll ask me about it and it'll get even weirder. I need to hurry up and go get some acupuncture.
_
I'm still on the fence about antidepressants. I don't think they'll help me, given my track record, but I feel guilty whenever I say no to a treatment, as if it means I'm not trying. I've got more to say on this, but I think it's for another post. I'm still thinking.
_
I've got a new and exciting hot spot on my head. It's just above my right ear, behind my temple. I suspect that this crazy-tender spot came from the Botox, that one of my temporarily deadened knots has come back to life and is angry. The timing is about right, as I'm also regaining the use of my eyebrows again. It feels like I have a scalp hernia. I have quite a few tension-type knots in my head musculature, but none has ever hurt like this without an actual injury. I'm hoping it won't last.
_
We're having a really rough time financially. My benefits were cut, (and they will be, again! Thanks Arnold!) and our rent is being raised as of next month. I'm not sure what we're going to do. But, we may have options as the reduction in my benefits has actually given me assistance opportunities from other providers, in the way of food stamps and housing assistance. Also, we may qualify for some kind of caregiver stipend. We put all the applications through last week, after talking to a very knowledgeable government employee who looked over our situation with an obvious eye of experience. If housing assistance comes through, we won't have to move right away, though we've been considering it for a while anyway. (I need to be somewhere quieter, very badly.) I am so grateful for these programs that have kept us alive and sheltered while I've been unable to work. It's funny, I never donated money to charity before I needed it myself. Now, every time we have a little extra, I give a little back.
Oh barf, are migraines making me a better person? I'm all donate-y and considerate of others now. Ugh. It's like a Lifetime movie. I don't like Lifetime movies. Though I might sell them my not very interesting story for enough money. Maybe, Valerie Bertenelli could play the older, wiser me that teaches everyone else valuable lessons on life and love. I don't know who would play present, snarky me. Maybe Fairuza Balk. She's awesome.
-
My formatting is lazy and my thoughts are scattered. Everything takes more out of me when it's hot and it's taken me all week to scrap this together.
-
Migraining tip of the day: If heat is a migraine trigger, keep cool! I drink water furiously, and keep my body temperature down with icepacks, frequent face and body rinses in the shower or at a sink and I keep a squirt bottle of cold, preferably ice water on hand for my own personal misting system. Happy Summer!
More...
Wednesday, June 30, 2010
Tuesday, June 22, 2010
An Exercise in Pain Management
When I got on my treadmill last Tuesday, I already had several strikes against me. I was irked at my well-meaning-but-messy boyfriend over shoes in the middle of the floor. The sun had shone just a tad too brightly through two different windows and bored flaming holes of ache through my eyes and left throbbing afterimages that I was firmly, and rather stupidly, ignoring. My morning typing had been loud and grating. Loading the dishwasher was harder than usual. But I was going to work out, dammit, even if I went slow. Some days this ends well, I'll push through some pain and come out the other side with endorphins to sustain me. But that didn't happen last Tuesday.
I'd started back on the treadmill pretty regularly since recovering from the Botox. The injections had a hellish aftermath that rendered me totally inert for several weeks, which just solidified my status as officially out of shape. I'd been taking slow walks around the neighborhood, but I can't get my heart rate up outside, at least not in an aerobic kind of way. There are too many triggers in my bustling big city for endurance to be a realistic goal. My walks outside are more about entertainment than exercise. I bring my camera with me and stop every little bit to have a impromptu photo shoot with some flowers or something rickety and beautiful. And I always bring the dog with me because as soon as she sees that I have real pants on, she gets all wiggly and I can't shut the door on that sweet face. So, there I go on my "walk", already a little worn out from putting on the real pants and sunscreen, bending and stooping and squinting in the sun to take pretty pictures and wrestling via leash with our 13 pound Senorita Sniffs-A-Lot while the cars roaring by bump their bass and fire trucks blare their sirens inside my skull. I never get above a stroll. Hence, the treadmill.
I get on it every day that I can. I try for at least twenty minutes or a mile, and can usually walk for an hour. Last Tuesday, I made it two minutes before I felt the first real twinge. It happens. I breathed through it. I closed my eyes and fell into meditation. I was walking down the block, under the shady trees in the quiet hours of the morning. It changed to a wooded area, with leaves crunching underfoot, then the beach, and a cliff overlooking the sea. I noticed that my thinking was off, that I almost felt like I was dreaming. I suspected something was wrong, but stubbornly kept walking, just slower. It was another ten minutes before the lightning bolts started in the back of my head. I slowed my pace dramatically, hoping it would pass. It did at first, but came roaring back a minute later and hit me so hard that I can't quite remember it. I know I stopped the treadmill and stood there, unable to release the bars, bent at the waist and crying a little. I couldn't think. My head hurt. I breathed and gathered my bearings. I looked at the display and I had only walked for fifteen minutes, a quarter of my usual time. I had no choice but to stop.
But, migraines happen, whether I exercise or not. So, I have to keep moving as much as I can. Learn from my mistakes. Practice my mindfulness. I've learned that I can't walk faster than two miles per hour without consequences. But I can handle a pretty good incline, as long as I increase it incrementally. And, if I keep it slow and steady I can reap painkilling and mood improving brain chemicals and long-term health benefits that make the risk of another last Tuesday unequivocally worth it.
For anyone with chronic migraines thinking about starting a workout routine, I recommend taking it slow, and drinking copious amount of water during and after. If ever in doubt, stop. But always keep trying.
Always, always, always keep trying.
More...
I'd started back on the treadmill pretty regularly since recovering from the Botox. The injections had a hellish aftermath that rendered me totally inert for several weeks, which just solidified my status as officially out of shape. I'd been taking slow walks around the neighborhood, but I can't get my heart rate up outside, at least not in an aerobic kind of way. There are too many triggers in my bustling big city for endurance to be a realistic goal. My walks outside are more about entertainment than exercise. I bring my camera with me and stop every little bit to have a impromptu photo shoot with some flowers or something rickety and beautiful. And I always bring the dog with me because as soon as she sees that I have real pants on, she gets all wiggly and I can't shut the door on that sweet face. So, there I go on my "walk", already a little worn out from putting on the real pants and sunscreen, bending and stooping and squinting in the sun to take pretty pictures and wrestling via leash with our 13 pound Senorita Sniffs-A-Lot while the cars roaring by bump their bass and fire trucks blare their sirens inside my skull. I never get above a stroll. Hence, the treadmill.
I get on it every day that I can. I try for at least twenty minutes or a mile, and can usually walk for an hour. Last Tuesday, I made it two minutes before I felt the first real twinge. It happens. I breathed through it. I closed my eyes and fell into meditation. I was walking down the block, under the shady trees in the quiet hours of the morning. It changed to a wooded area, with leaves crunching underfoot, then the beach, and a cliff overlooking the sea. I noticed that my thinking was off, that I almost felt like I was dreaming. I suspected something was wrong, but stubbornly kept walking, just slower. It was another ten minutes before the lightning bolts started in the back of my head. I slowed my pace dramatically, hoping it would pass. It did at first, but came roaring back a minute later and hit me so hard that I can't quite remember it. I know I stopped the treadmill and stood there, unable to release the bars, bent at the waist and crying a little. I couldn't think. My head hurt. I breathed and gathered my bearings. I looked at the display and I had only walked for fifteen minutes, a quarter of my usual time. I had no choice but to stop.
But, migraines happen, whether I exercise or not. So, I have to keep moving as much as I can. Learn from my mistakes. Practice my mindfulness. I've learned that I can't walk faster than two miles per hour without consequences. But I can handle a pretty good incline, as long as I increase it incrementally. And, if I keep it slow and steady I can reap painkilling and mood improving brain chemicals and long-term health benefits that make the risk of another last Tuesday unequivocally worth it.
For anyone with chronic migraines thinking about starting a workout routine, I recommend taking it slow, and drinking copious amount of water during and after. If ever in doubt, stop. But always keep trying.
Always, always, always keep trying.
More...
Tuesday, June 15, 2010
Because the World Needs More Wandering Compositions
So, I quit the Cymbalta. I almost immediately felt like I couldn't quite slow down, even at a stop. Jittery and anxious, I searched for more information and found out that my reaction wasn't abnormal. At first, I was going to tough it out. But then things got dramatically worse. It started messing with my sleep. I was up and down that first night, and I was miserable. The second day was just as jittery, if not worse, and my jaw was aching and triggering bolts of pain to shoot up through my temples. I was clenching my jaw involuntarily and couldn't even stop when I tried. I tried taking half a dose the next day, thinking I just needed to taper up more slowly, but nothing changed except my leg started twitching non-stop. So, I stopped taking it.
I did more internet searching, and found some FDA articles that confirmed my decision. No one had ever told me about serotonin syndrome (FDA alert from 2006) or about how difficult it is to get off of Cymbalta (pdf about Cymbalta Discontinuation Syndrome). I really wish my doctor would have, I never would have gone on it. Luckily my three day stint on the drug did not cause any withdrawal effects. I didn't really expect it to, but paid close attention to my body for the next week anyway. Part of me thinks I am silly to be this concerned about it. Doctors always seem to think so. I may try another antidepressant, but I don't want to go on something with these kinds of strings attached unless all the safer methods have been ruled out. There's got to be safer antidepressants, right?
I tried the Sumavel, too. I really hate triptans. They give me this horrible buzzy/fuzzy/electric/nauseous feeling that makes my skin crawl, in exactly the same way as morphine and whatever they've given me when they've knocked me out for surgeries. HATE. Also, I still didn't really know when to take it, so I waited until I was sure it was a migraine migraine (not wanting to waste my free sample), at which point I was well into it; in high pain, irrational and hypersensitive, which led to a panic attack over the delivery method, which, in my defense, is kind of scary the first time. And it does hurt, but not horribly. A migraining panic attack is a funny thing; it turned me back into a six-year-old with a sliver in my finger, running from the tweezers in my mother's hand, crying, "I don't want it! I don't want it!" Back then it took the promise of two ice cream sandwiches to get me to sit still for that minor surgery. Too bad that I'm now thirty-one years old, not six, and ice cream sandwiches just don't allay all fears anymore. And instead of my knows-what's-best-for-me-mother, it was my just-trying-to-help-boyfriend going, "Didn't you just ask me to do this...?" Yes. Yes, I did. And it took two valiums, but I finally succumbed. And it hurt, a little. But besides the hypospray novelty, it was the standard triptan experience. Felt weird, lay down, no real change. I was feeling better a few hours later, but it's hard to say if it was the Sumavel or if the migraine had just run its course. I haven't decided whether I'm going to fill the scrip or not.
_______________________________________
I submitted to another blog carnival! This one is over at Somebody Heal Me and the theme was food, for which I wrote a somewhat wandering composition to vegetable eating. Go check it out!
_____________________________________
A few totally non-head related items:
My smoothie du jour was fruit heavy today and is sublime. My usual spinach, yogurt and soymilk went in, but I had no bananas so I was forced to improvise. A peach and a nectarine that were a moment from turning made it a little too tart, so I added a handful of gorgeous cherries. I'm having summertime for lunch.
I've been getting crafty over here! I've altered some old clothing, a la Wardrobe Refashion and Craftster, and with tons of inspiration from Megan Nicolay's books. I'm trying to crochet this hat, or something similar and it's not going well. But I mostly successfully crocheted a shopping bag out of plastic bag yarn, and though it's a little oddly shaped, I am so pleased with it!
I'm nearing the end Stargate SG1 on Hulu (Season 9! Vala, yay!), and have started introducing myself to Lost. I had to wait for everyone to calm the hell down about it before I could even think of watching it. Now that it's over, and everyone seems to be done discussing whether they loved or hated the ending, I can finally settle into it. So far, I really like it.
I got a Waterpik and it is my new favorite thing. I'm a terrible flosser, in technique and frequency, but I LOVE shooting my gums with water. I have no idea why.
_______________________________________
Poor Migraining Tip of The Day:
The angle and aggression of the summer sun, in the morning in particular, has reached death glare level and I have not been responding well. So, now every window in the house is covered with sheets and mismatched drapes and random batik fabrics I've had for a hundred years. The improvisation is not very pretty, but I don't even notice because it's so nice to be able to relax in my own home. It's like a haven of dim over here.
More...
I did more internet searching, and found some FDA articles that confirmed my decision. No one had ever told me about serotonin syndrome (FDA alert from 2006) or about how difficult it is to get off of Cymbalta (pdf about Cymbalta Discontinuation Syndrome). I really wish my doctor would have, I never would have gone on it. Luckily my three day stint on the drug did not cause any withdrawal effects. I didn't really expect it to, but paid close attention to my body for the next week anyway. Part of me thinks I am silly to be this concerned about it. Doctors always seem to think so. I may try another antidepressant, but I don't want to go on something with these kinds of strings attached unless all the safer methods have been ruled out. There's got to be safer antidepressants, right?
I tried the Sumavel, too. I really hate triptans. They give me this horrible buzzy/fuzzy/electric/nauseous feeling that makes my skin crawl, in exactly the same way as morphine and whatever they've given me when they've knocked me out for surgeries. HATE. Also, I still didn't really know when to take it, so I waited until I was sure it was a migraine migraine (not wanting to waste my free sample), at which point I was well into it; in high pain, irrational and hypersensitive, which led to a panic attack over the delivery method, which, in my defense, is kind of scary the first time. And it does hurt, but not horribly. A migraining panic attack is a funny thing; it turned me back into a six-year-old with a sliver in my finger, running from the tweezers in my mother's hand, crying, "I don't want it! I don't want it!" Back then it took the promise of two ice cream sandwiches to get me to sit still for that minor surgery. Too bad that I'm now thirty-one years old, not six, and ice cream sandwiches just don't allay all fears anymore. And instead of my knows-what's-best-for-me-mother, it was my just-trying-to-help-boyfriend going, "Didn't you just ask me to do this...?" Yes. Yes, I did. And it took two valiums, but I finally succumbed. And it hurt, a little. But besides the hypospray novelty, it was the standard triptan experience. Felt weird, lay down, no real change. I was feeling better a few hours later, but it's hard to say if it was the Sumavel or if the migraine had just run its course. I haven't decided whether I'm going to fill the scrip or not.
_______________________________________
I submitted to another blog carnival! This one is over at Somebody Heal Me and the theme was food, for which I wrote a somewhat wandering composition to vegetable eating. Go check it out!
_____________________________________
A few totally non-head related items:
My smoothie du jour was fruit heavy today and is sublime. My usual spinach, yogurt and soymilk went in, but I had no bananas so I was forced to improvise. A peach and a nectarine that were a moment from turning made it a little too tart, so I added a handful of gorgeous cherries. I'm having summertime for lunch.
I've been getting crafty over here! I've altered some old clothing, a la Wardrobe Refashion and Craftster, and with tons of inspiration from Megan Nicolay's books. I'm trying to crochet this hat, or something similar and it's not going well. But I mostly successfully crocheted a shopping bag out of plastic bag yarn, and though it's a little oddly shaped, I am so pleased with it!
I'm nearing the end Stargate SG1 on Hulu (Season 9! Vala, yay!), and have started introducing myself to Lost. I had to wait for everyone to calm the hell down about it before I could even think of watching it. Now that it's over, and everyone seems to be done discussing whether they loved or hated the ending, I can finally settle into it. So far, I really like it.
I got a Waterpik and it is my new favorite thing. I'm a terrible flosser, in technique and frequency, but I LOVE shooting my gums with water. I have no idea why.
_______________________________________
Poor Migraining Tip of The Day:
The angle and aggression of the summer sun, in the morning in particular, has reached death glare level and I have not been responding well. So, now every window in the house is covered with sheets and mismatched drapes and random batik fabrics I've had for a hundred years. The improvisation is not very pretty, but I don't even notice because it's so nice to be able to relax in my own home. It's like a haven of dim over here.
More...
Saturday, June 5, 2010
Narcissism Pays! (But Not Much)
Can't work. But I still like to eat. So, I do what I can to make money. In the past, when I've been without the income of a full time job, my filler work has included tutoring, editing, data entry, teaching assistance and research assistance. Currently, my head isn't allowing consistent mental acuity or physical ability. Some days are okay, but I can't predict them and I certainly can't control them, so being a reliable employee isn't really in my skill set right now. My solution to this problem is surveys. I don't make much, but it keeps me occupied and feeling productive, even when I can't think. Which is often.
I belong to several legitimate survey sites. Opinion Outpost, Survey Spot, and Lightspeed are the ones that have open registration and have consistently paid out. Myview is another good one, payout-wise, but they are by referral only, so if you want in, send me an email and I'll put in a good word!
There are a few tricks to filling out surveys for profit and not losing your mind:
1. Fill out everything. All the profiles and every survey, even unpaid ones. Why? Well, sometimes those unpaid surveys are screeners for other, more profitable and interesting surveys. From "unpaid" surveys, I've received free, full size samples of produce (a huge bag!), massage oil (ahem), granola bars (yum!) and cereal (bulk size!) to try, give my opinion on, and then get paid for it. Non-paying screeners have also led me to be invited to a few a long term projects, one of which paid a few hundred dollars at the end of a three month "discussion".
2. Pace yourself. If you don't feel like sitting in front of the computer and repeatedly filling out your age, gender, number of members of household, marital status, sexual preference, parental status, income level, type of residence, estimation of assets, type of vehicle, political leanings, fabric softener preferences... Did I drift off for a second there? Sorry. It can be tedious and carpal tunnel inducing. I sometimes ignore the surveys altogether for a few days, then spend hours filling out EVERY SURVEY EVER. Or I'll do them as they open, interrupting blog writing and forum lurking whenever a new email invite comes in. It's best to work when you can and forget about it if you can't. I've learned the hard way that pushing through the blurry vision and squinty eyes of an early migraine attack to finish just one... more... survey... is NOT a good plan.
3. Keep at it! It took a few months of diligence for my efforts to start paying off. But, once they did, I was thrilled. It's really a nice boost to have an extra twenty in my Paypal or an Amazon giftcard just waiting to be spent on everything practical I can find with free super saver shipping.
PS: None of these companies paid me to mention them here. Your mileage may vary.
PPS: I'm revisiting this post a few months later to add that Survey Spot suddenly closed my account with no explanation. I had some money in it, which I lost, and they have not answered my queries with anything but an auto-response. Their policies state they can do this, which I agreed to when I signed up, but I was pretty disappointed with the way it went down. I made a good amount of money off of them, though, so it's still worth the risk, in my opinion. Just, buyer beware and all.
PPPS: Opinion Outpost also randomly shut down my account and refused to explain why. I now empty my accounts when they hit $20.
More...
I belong to several legitimate survey sites. Opinion Outpost, Survey Spot, and Lightspeed are the ones that have open registration and have consistently paid out. Myview is another good one, payout-wise, but they are by referral only, so if you want in, send me an email and I'll put in a good word!
There are a few tricks to filling out surveys for profit and not losing your mind:
1. Fill out everything. All the profiles and every survey, even unpaid ones. Why? Well, sometimes those unpaid surveys are screeners for other, more profitable and interesting surveys. From "unpaid" surveys, I've received free, full size samples of produce (a huge bag!), massage oil (ahem), granola bars (yum!) and cereal (bulk size!) to try, give my opinion on, and then get paid for it. Non-paying screeners have also led me to be invited to a few a long term projects, one of which paid a few hundred dollars at the end of a three month "discussion".
2. Pace yourself. If you don't feel like sitting in front of the computer and repeatedly filling out your age, gender, number of members of household, marital status, sexual preference, parental status, income level, type of residence, estimation of assets, type of vehicle, political leanings, fabric softener preferences... Did I drift off for a second there? Sorry. It can be tedious and carpal tunnel inducing. I sometimes ignore the surveys altogether for a few days, then spend hours filling out EVERY SURVEY EVER. Or I'll do them as they open, interrupting blog writing and forum lurking whenever a new email invite comes in. It's best to work when you can and forget about it if you can't. I've learned the hard way that pushing through the blurry vision and squinty eyes of an early migraine attack to finish just one... more... survey... is NOT a good plan.
3. Keep at it! It took a few months of diligence for my efforts to start paying off. But, once they did, I was thrilled. It's really a nice boost to have an extra twenty in my Paypal or an Amazon giftcard just waiting to be spent on everything practical I can find with free super saver shipping.
PS: None of these companies paid me to mention them here. Your mileage may vary.
PPS: I'm revisiting this post a few months later to add that Survey Spot suddenly closed my account with no explanation. I had some money in it, which I lost, and they have not answered my queries with anything but an auto-response. Their policies state they can do this, which I agreed to when I signed up, but I was pretty disappointed with the way it went down. I made a good amount of money off of them, though, so it's still worth the risk, in my opinion. Just, buyer beware and all.
PPPS: Opinion Outpost also randomly shut down my account and refused to explain why. I now empty my accounts when they hit $20.
More...
Friday, June 4, 2010
Happenings
I had a family party last week. It was the usual: throngs of people yelling at each other over the din of hip-hop via concert-sized subwoofers and a drum kit in the middle of it all with a three-year-old jamming his heart out. Okay, no, there were only about 15 of us and the speakers were the normal kind and the drum kit was upstairs, but still.
I survived. With the help of full-sized earplugs, my new hat, and some strategically administered drugs, I even enjoyed myself. I stayed long enough to have a little fun, socialize, eat, and relax, but left early enough so I missed the real shenanigans entirely. I consider the occasion a success.
My only frustration I felt that day was for how the conversation was constantly brought back to my headaches. I understand my family's curiosity, but I don't want to discuss it, for so many reasons. I have no news. Every day is the same for me. I have no current hope for relief and my focus is on improving my quality of life. I don't enjoy looking at sad faces and being pitied makes me nauseous, so I answered a few questions from everyone who asked, then politely and with a smile insisted that I didn't want to talk about it anymore. They took it well (mostly), but I feel guilty. I worry that I am shutting people out. But I don't have energy for everyone anymore. I barely have energy for me.
But I have pain all the time. If I am only going to be out of the house and with family for three hours, I don't want to spend two of those talking about pain. I'm trying to have a good time! I just want to forget how messed up my body is and smile and love on my aunt's new hairstyle and joke with my grandparents about facebook and laugh at the pool horseplay and enjoy watching my uncle scramble to keep up with the three year old.
I'm composing an email. Explaining to them what's going on, and why I don't talk about it. I don't know yet if I'll send it. Maybe.
______________________________
I had an appointment this week with the new internist. I was nervous again, but I just kept breathing and only made one weird, awkward joke. She suggested an anti-depressant, which I relented to try. I was hesitant because I have had bad experiences in the past, like that one time I went emotionally numb for a year. But I wasn't getting adequate health care then, and didn't have a partner to help me self evaluate. Actually, when the doctor asked me how I've been feeling, my first instinct was to sugar coat it. Then I glanced at my boyfriend, who was raising his eyebrows at me in that if you don't tell her I will way and I told the truth. So, I've got a prescription for Cymbalta and instructions to taper as slowly as I feel necessary. We'll see how it goes. She also filled me up on my usuals, and referred me to a couple psychologists, a headache specialist, and an internist who does acupuncture and has knowledge in chinese medicine. We went over the few records she's received so far and she is going to order a new blood panel and some kind of screening where they check for heavy metals and things of that nature. I was starting to fade at this point, so it all gets a little hazy. She gave me a sample and prescription for Sumavel, and said that with my fairly constantly waxing and waning migraines that I should take it when the pain gets worse than normal.
This was a little thing, but this is the first time a doctor has given me a prescription abortive and given me instructions that apply to me. Usually they tell me to take it when the migraine starts (but there isn't usually a clear beginning or end), or when I first start to experience an aura (but my auras come before, during, after and without migraines so that's a totally unreliable gauge, too). Then the doctor usually gets irritated, like I'm making it difficult on purpose and tells me to take it as soon as I can, but not too late, or something similarly vague and I leave confused and frustrated because I have no idea when to take this drug. I mean, my head hurts. Should I take it now? Or is it too late already? I've been nauseous for the last hour, and have had peripheral sparklies all day. When should I have taken it? NO IDEA.
"When the pain gets worse than normal". So simple. I love that I'm not developing a complex trying to figure out what it means. I love this doctor.
___________________________
I emailed Hulu because many of their shows and movies are not captioned and they emailed me back the next day. They sent me a very nice note regretting that I'm not able to watch some programs with captions and assuring me that they will forward on the request to the content owner. If I have any further caption requests, I can leave them on a discussion board and they may not always respond, but they always read and make note of them. This was a positive response, and I appreciate it. Thanks Hulu, now I almost forgive you for the fear-mongering cervical cancer commercials!
More...
I survived. With the help of full-sized earplugs, my new hat, and some strategically administered drugs, I even enjoyed myself. I stayed long enough to have a little fun, socialize, eat, and relax, but left early enough so I missed the real shenanigans entirely. I consider the occasion a success.
My only frustration I felt that day was for how the conversation was constantly brought back to my headaches. I understand my family's curiosity, but I don't want to discuss it, for so many reasons. I have no news. Every day is the same for me. I have no current hope for relief and my focus is on improving my quality of life. I don't enjoy looking at sad faces and being pitied makes me nauseous, so I answered a few questions from everyone who asked, then politely and with a smile insisted that I didn't want to talk about it anymore. They took it well (mostly), but I feel guilty. I worry that I am shutting people out. But I don't have energy for everyone anymore. I barely have energy for me.
But I have pain all the time. If I am only going to be out of the house and with family for three hours, I don't want to spend two of those talking about pain. I'm trying to have a good time! I just want to forget how messed up my body is and smile and love on my aunt's new hairstyle and joke with my grandparents about facebook and laugh at the pool horseplay and enjoy watching my uncle scramble to keep up with the three year old.
I'm composing an email. Explaining to them what's going on, and why I don't talk about it. I don't know yet if I'll send it. Maybe.
______________________________
I had an appointment this week with the new internist. I was nervous again, but I just kept breathing and only made one weird, awkward joke. She suggested an anti-depressant, which I relented to try. I was hesitant because I have had bad experiences in the past, like that one time I went emotionally numb for a year. But I wasn't getting adequate health care then, and didn't have a partner to help me self evaluate. Actually, when the doctor asked me how I've been feeling, my first instinct was to sugar coat it. Then I glanced at my boyfriend, who was raising his eyebrows at me in that if you don't tell her I will way and I told the truth. So, I've got a prescription for Cymbalta and instructions to taper as slowly as I feel necessary. We'll see how it goes. She also filled me up on my usuals, and referred me to a couple psychologists, a headache specialist, and an internist who does acupuncture and has knowledge in chinese medicine. We went over the few records she's received so far and she is going to order a new blood panel and some kind of screening where they check for heavy metals and things of that nature. I was starting to fade at this point, so it all gets a little hazy. She gave me a sample and prescription for Sumavel, and said that with my fairly constantly waxing and waning migraines that I should take it when the pain gets worse than normal.
This was a little thing, but this is the first time a doctor has given me a prescription abortive and given me instructions that apply to me. Usually they tell me to take it when the migraine starts (but there isn't usually a clear beginning or end), or when I first start to experience an aura (but my auras come before, during, after and without migraines so that's a totally unreliable gauge, too). Then the doctor usually gets irritated, like I'm making it difficult on purpose and tells me to take it as soon as I can, but not too late, or something similarly vague and I leave confused and frustrated because I have no idea when to take this drug. I mean, my head hurts. Should I take it now? Or is it too late already? I've been nauseous for the last hour, and have had peripheral sparklies all day. When should I have taken it? NO IDEA.
"When the pain gets worse than normal". So simple. I love that I'm not developing a complex trying to figure out what it means. I love this doctor.
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I emailed Hulu because many of their shows and movies are not captioned and they emailed me back the next day. They sent me a very nice note regretting that I'm not able to watch some programs with captions and assuring me that they will forward on the request to the content owner. If I have any further caption requests, I can leave them on a discussion board and they may not always respond, but they always read and make note of them. This was a positive response, and I appreciate it. Thanks Hulu, now I almost forgive you for the fear-mongering cervical cancer commercials!
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