Success-mas

I made my own holiday this year, and it was really great.

Things that were memorable this year:

Being mostly vegan: I didn't gorge on unhealthy food because being plant-based means I don't even want any of it anymore. I ate two tiny bites of a baklava, my favorite dessert of all time, and it was delicious, but I absolutely didn't want more than that and donated the other half to the hordes of willing takers around me. It was a brunch of quiche and bagels and lox, and I ate mostly fruit and potatoes, just a few olives, and a half-bagel with dijon, tomato, and capers. I was completely satisfied and feel great about my choices.

I made potatoes that were half an hour late to the meal, but still got devoured. And they were nearly no-fat! (Realizing that food doesn't have to be coated in oil to be tasty has been a delightful and wondrous discovery, one that I'm probably being obnoxious about, but I never learned to cook healthy and tasty at the same time and the new-found power is dizzying.)

The people: Having a gathering with so few people might have felt small but these particular people were among my very favorites, so to have them in one place at one time was incredibly invigorating. Stinky people were less so than usual. I talked and laughed and memorized the faces of the people I love; it was a beautiful day.

Head-wise: I had an amazing time, and felt almost normal, for hours. I was very well medicated, and my boyfriend handled me with kid gloves from the moment I woke in the morning. I still felt the effects from all the stimuli, but it was much less so than previous years, and even the following several days of migraine-backlash were fairly mild. However, I'd love to not be nauseated, for just a day. It's exhausting, and I'm over ginger ale now, seriously.

Best WTF moment: My grandma shared a cunnilingus story (involving habaneros, oh god) that I was so disappointed to be hearing from the next room. I could only cackle into my hand and wish I had a theater seat and some popcorn.

The realization that I finally did xmas right by myself: I actually did it. I skipped the big family party that I've gone to every christmas I can recall. It didn't sink in until we were all the way back home, I had put nearly everything away and was in my comfies with a cup of molten chocolate hot cocoa. I looked at the clock and realized the party people hadn't even started the gift-exchanging yet. I felt nothing but relieved to be in my quiet house, and surprisingly, not a bit of regret that I didn't attend. If anyone there, all of them far more able-bodied than I, missed me, they'd be welcome to visit. However, if the past is any indicator, I don't think I'll hear from them.

So, the fallout has been minimal; I've been taking it easy on myself the past few days, but I've actually been somewhat functional, much more so than previous years, at least. I'm looking forward to new years', I've been thinking on the past and the future and how I want to shape it. 2014 will be an adventure, of that I'm certain.


More...

Ends and Beginnings

I don't make New Years' resolutions, instead I prefer to reflect on the happenings and changes of the previous year and think about my hopes for the next.

I've always felt that resolutions are a good opportunity to think about the things we'd like to change about ourselves, but that to swear myself to changes that I may not be ready to make for the sake of an arbitrary date, it may work for some people but I'd be setting myself up for failure and disappointment. I never do anything until I'm darned ready to, and no amount of boozy holiday nostalgia is going to speed up the process.

Not that I'm drinking any booze. Thanks, migraines!

I've made all kinds of changes in my life this year. I made fitness a big priority and I've made leaps and bounds in my physical stamina.

I've gone from being a pescetarian to about 90% vegan, and it's been pretty great.

I continued to take classes, and got my gpa up to a respectable level. Now, I qualify for a boatload more scholarships, so I've got some hope in that area. I'm going to be transferring to a new school soon, and I suspect I'm going to need the financial help.

I also chose a major, and settled tentatively on a career path. I want to write, SURPRISE, and it's terrifying to embrace my deepest, oldest dream, but what else is life for than going for it?

We've got one more dog than we did a year ago, and while I was reluctant to take him, he's been nothing but a joy to have in our lives and he's firmly embedded himself in our hearts.

I chopped all my hair off and it was liberating and wonderful. It reminded me that even if everyone you know is telling you not to do something, it still might be the right thing to do.

I've had some heavy realizations about relationships. People I thought would be in my life forever have completely faded away, and while I understand, it still hurts. I try not to dwell on the people I've lost, because the people I have are so phenomenal I really don't have room in my heart for regret, but it can be startling to look around at your support system and realize that 90% of it was made up of spiderwebs and razor blades. But like I said, the people I've got left are marble and steel, so I may be lonely, but I'm still lucky.

Cooking, gardening and sewing are skills I continue to improve, some more than others. Photography has fallen by the wayside, and I miss it. I read the Sookie Stackhouse series over the summer, have watched a crapton of Star Trek, and fell in love with music again, especially lady crooners.

I'm not sure what to expect from the coming year. We'll probably move. I'm starting at the new school, so that will be a whole new routine. I've got a long list of things I want to learn, and do, and be, and I'm not quite sure which direction I'm going to head next.

Stay tuned.

More...

Quietly Christmasing

The holidays are rapidly approaching and I've figured out a new way to avoid the pain that big gatherings always trigger in my poor, sensitive head: I won't go.

That's right, it only took me 6 1/2 years to sort that out. I've spent the last six christmases in pain, torturing myself to keep up the tradition of full-family-immersion. I couldn't imagine spending christmas any other way because as long as I could remember, that's what the holidays were: family, chaos, food, horseplay, drinking, talking, cookies, laughter, and there may only be thirty-something of us, but when we're all together, the roar of the crowd amplifies upon itself and we all find ourselves shout-conversing during the peakier points of the party.

The last six christmases have been truly miserable for me. I do my best to smile and socialize as much as I can with earplugs in, hat on, and medicated to the brimmmiest of brims, but no matter how precautious I am, it's ALWAYS at least a week of laying around afterwards and often the recuperation lasts until my birthday (two weeks into January), when I am expected to go through the same thing again for the joy of a massive family birthday party (for me and others).

So, this year: NO.

No big family christmas party, and no big birthday party. I will not attend any gathering that hosts more than a handful of people, and I will not hurt myself for the sake of appearances or to fulfill anyone's misguided idea of what the holidays are, particularly my own.

This year, this existentialist atheist will celebrate christmas however seems migraine-appropriate, with my parents on the eve perhaps, or with just my grandparents the weekend after. I will not travel so hard it hurts me, and I will certainly not give the tiniest iota of a shit if some clueless relative thinks I'm rude for taking care of myself.

We also have a cloud over the season as it'll be a year since my partner's mom died. He's sad, and not interested in most christmasy things, but he did watch Die Hard with me, so he'll be ok.

Without the needs and chaos of other people being the center of my solstice-celebrations, I am free to embrace the season however moves me in the moments, and I've been reveling in it in my own, very quiet way. I've acquired a few presents for loved ones, and I'd love to get more if my budget allows. I've been enjoying both christmas music and movies, my favorites this year being nearly any version of Carol of the Bells (oddly, because I always thought it sounded like the soundtrack to a christmas-themed slasher flick) and the Robert Downey Jr/Holly Hunter flick, Home for the Holidays (which is Thanksgiving-themed, but WEV). Pandora's got a decent, but rather repetitive holiday channel, to which I added a little Vince Guaraldi from a Charlie Brown Christmas, the equivalent of a musical shot of eggnog to my soul.

I'm looking forward to having just a few, small gatherings with people I love, and taking time to reflect on the future. Change is constant, and I can't wait to see what comes next.


More...

Schooling Accommodations, in My Experience

School's finally almost over and I am peeking my head out from under the mountains of homework that have been blocking out everything else and realizing that I still have a blog here. Hi!

I've still got my final exam this week, so I'm not really back quite yet, but my teacher asked me for feedback regarding my experience with the disabilities department and accommodations at my school, and I ended up writing quite the novel about it, so i'm going to cheat and paste that here and we'll pretend it's a real post until hopefully next week when my brain cells start readjusting to not being submerged in the workings of our american government.

This email is in response to the questions (summarized): Did the provided accommodations work for you? What has your accommodation experience been in other classes?


Hey there Professor,
>
> For my needs, the transcripts were pretty perfect. There were a few misspellings and mis-transcribed words that I should have made note of at the time (in hindsight), but didn't because I was always able to figure it out.
>
> I have experienced a bit of a spectrum when it comes to getting captions or transcripts in my other classes. I've taken a class with no audio/video to caption, a class that had at least 75% of the study materials as audio and video and everything was already captioned and transcribed as part of the software, and one class where we spent the entire quarter scrambling for me to have access to a very considerable amount of video content, which resulted in at least half of my assignments being late due to captioning delays. That teacher used Dropbox to deliver my captioned content separately from the standard class curriculum, which worked, but I really preferred the way you did it in this class, how transcript links were right there with the regular content. This class felt like you and the captioning department had it under control and in the rare instance when I didn't have a transcript, I really appreciated your responsiveness.
>
> Other classes have had similar types of content, videos are common, especially through youtube. I've had to fight for captioned youtube videos previously because youtube does provide them automatically sometimes and the [disabilities department] thought that should suffice, but those auto-captions are TERRIBLE, usually with so many errors, I can't even begin to guess what is actually being said.
>
> In that situation, I really wasn't satisfied with the [disabilities department]'s decision not to caption videos that weren't accessible to me (for the previously existing youtube craptioning), but my teacher determined that particular video wasn't essential, the material was covered elsewhere perhaps, so the point ended up being moot. I was frustrated, but it didn't end up hurting my grade in the end, thankfully.
>
> There has been an issue with getting copywritten material captioned, because the [disabilities department] can't do it. In the past, I ended up sourcing my own transcript via google (for a popular movie) and for the other I hunted down and emailed the makers of the assigned independent documentary and when they got back to me they offered to send me a captioned copy... only two months after the class had ended. I forwarded the email to my teacher, so hopefully he can use it in the future, but at the time he ended up just altering the associated assignment for me.
>
> And, since we're on the topic, I did have one other accessibility issue with this class. I had trouble with the media presentations because I have sensory issues, so I experienced the animations as nauseating and dizzying, and the text was tricky for me to sift through for all the differences: in font sizes, some bolded words, some italics, several pairs of parentheses and brackets and maybe a sentence fragment with an arrow in there, sometimes all on the same slide. I understand that these variations in the presentations are meant for keeping interest, and for highlighting important pieces of information, but I really couldn't comprehend it as it was. I ended up going through the presentations frame by frame and typing it all out, then studying from my text. I learn that way anyway, so it's wasn't a huge stretch in study habits, but if I could have had all that content in plain text form, it would have made that part of the class much more comfortable for me. I'll be asking my [disabilities department] counselor if this is something they can help me with in the future.
>
>
Best,

Steph


More...

Summary: Molasses, Congress, Stupid Goals, Grump

Halfway through the quarter and I mostly hate this class.

Forcing myself to study is a chore, I'm not getting the amazing grades I'm used to as easily, and I think government is the worst subject ever and wish that it would all burn down and we could live in anarchy just so I don't have to learn this anymore. I hate it. HATE.

It looks like it'll get better in the coming weeks, hopefully more political movements and less nitty-gritty details of the workings of congress. I'm SO BORED. And I've had at least 8 people tell me that they loooooved their poli sci classes and all those government workings are so interesting, aren't they? NO HOLY SHIT THEY REALLY ARE NOT, LIKE AT ALL.

I'm barely maintaining my A right now, luckily this teacher offers extra credit, so I've still got a fighting chance at keeping it. If I get anything less than an 89% in the class, I lose my goal of having a 2.5 gpa by xmas. Which wouldn't mean anything, except it'll be a few more months before it's up, but I set this stupid goal for myself and now I really want to meet it. Taking one class at a time makes watching a low gpa rise like pouring molasses in January, it is taking for-ev-er for me to rectify the mistakes of my youth. It was over ten years ago, why oh why do they not have a statute of limitations on crappy grades? Though, that would likely make the credits I did manage to earn back then null and void, so perhaps I'll just take my humble pie and eat it.

My head's been not too bad, though I'm frustrated to discover than I can either go for an uphill hike with the puppies or get homework done, but not both, not in the same day. Exercise has been my therapy lately, so being stuck inside, stressing over school and other things, has been uncomfortable. I can't change anything at the moment, though, so I just need to get through the next five weeks of this class and hopefully I'll be able to right myself again.

I knew it wouldn't always be as easy or fun as these last several classes have been, but I'm really ready to get back to enjoying school already, this is bumming me out.




More...

What Matters

What matters changes over a time, it may seem gradual but so many moments in our lives alter us forever, and we rarely notice. What mattered then is irrelevant now, uninteresting, or embarrassing. What will matter may not seem interesting, or desirable, or may not even be conceived of yet, and what does seems like it always will.

They say people don't change, but people are constantly changing. Our experiences bounce us off each other like pinballs, and every hit is a change in trajectory. BING a migraine BINGBINGBINGBINGBING chronic migraines, and my life has gone off in the most unexpected direction.

I may still be the girl I was at 8, at 15, at 27, but I'm a whole lot more than that, and less. I've lost some things along the way, enthusiasm, naivete, ignorance of pain, but I think what I've gained keeps me whole enough, temperence, perserverence, and how to fight fear aren't bad spoils of age and illness, if I do say so myself.

It's just that social media is so shiny, and my life could sometimes use some sparkle and I just can't help the envy I feel at pictures of smiling, laughing, hugging groups of people. But we all travel our own road and everything on display is for display purposes only, anyway.




More...

It's Always an Adventure

How can I possibly still have symptoms I haven't talked about here? Apparently, migraine is so varied and complex, a person can spend years writing about it and still have new material from which to draw.

I was preparing dinner the other night and a fork happened to scrape along a plate just so, and I got that "nails on a chalkboard" feeling. A shiver runs up my spine, my teeth and jaw go tense, a vibration seems to run through every cell in my body as if I'm being electrocuted, and my head - if it wasn't already up and running - flares in response. The effect can last for several minutes to hours, and can be triggered by almost any scraping noise. Metal, glass, ceramics, rock, even wood; if it hits a certain vibration, I just can't tolerate it. Like motion sickness, this is another sensitivity I've gained with the onset of chronic migraines. For most of my life, it would have been an easily ignorable unpleasant noise, but now, the sound of that fork on the plate hit me so hard I had to sit down for ten minutes, wait for my head to stop ringing.

Loss of coordination is something I know I've talked about before, but not recently. Many of my symptoms wax and wane and being particularly stumbly seems to be coming back. It's funny because my body continues to grow stronger, I'm exercising nearly every day, and my coordination should be improving, if anything. But no, I trip over cracks in the road, veer wildly while trying to walk a straight line, I'm shoulder-checking the door frames, and generally walking into every perfectly visible, large object that happens to be in my path. And I've got the bruises and scratches to prove it. I'm just grateful I've been able to work out so much these past few months, I'm not getting hurt nearly as much, and my injuries are healing much faster than they used to, I can't imagine the world of hurt I'd be in right now if I was as out of shape as I was and falling all over the place.

Another infrequently-mentioned but often-experienced symptom is the chills. More than once this summer, it was more than 90 degrees outside, and migraine had my skin covered in gooseflesh and my feet freezing. Hot tea and a heating pad on a hot summer day? Please and thank you, when I'm migraine-cold I will cut someone for that heating pad.

And then, there are the brand-new symptoms. Yesterday I went to the beach, and it was low-key, but still: the sun, laughing and talking, walking in the sand, sitting in a moving car. I was plummeting straight down migraine-hill on the way home and later that evening, it got weird. I realized it was worse than usual when I kept being stopped in mid-sentence, mid-thought, and mid-movement by not exactly pain, but something certainly disabling and certainly on the right side of my head, near the temple. It hurt, but it wasn't the pain that stopped me, it was like a spasm or as if everything had stopped everywhere else except for this one spot in my head. There was nothing to do but clasp my face and wait it out.

My brain was clearly not working right, so when I saw my boyfriend in pain, I offered him a massage, not even thinking about my already advanced migraine situation. I worked on him, and worked on him, and then looked at my fingers and had the horrifying feeling that they didn't appear shorter because of the way I was kneading into my boyfriend's flesh, they appeared shorter because there was nothing where they disappeared. My logical side was totally weirded out, perfectly aware that the situation was entirely impossible, and maybe I should just stay calm and it would resolve on its own. But the hallucination wouldn't pass and after several seconds, I was having trouble not freaking out. I held my hand in front of my face, seeing the length of my fingers, nails and all, but part of my mind was still so focused on the idea of short fingers, that it was sort of overriding my real vision. I could see both at the same time.

I, of course, started to cry and told my boyfriend that I was having "visual problems". He immediately, bless him, tilted his head so I could see his face, directed me to look at him, and told me it was ok, which was really the best thing he could have done. It took a few minutes for the image to pass, and I still get the heebies just thinking about it.

I slept well last night, but the weird head-pain-spasms started up again this morning, a few hours after getting up, and today has been a struggle. I've managed to feed myself twice (once before it really set in, but I'm still counting it, so nyah), did some homework (slowly, but surely!), and finished up this post, but otherwise, I think today is a wash. Another one lost to the abyss that is migraine.

At this moment, I'm ok with it; migraine's frustrating, annoying, painful, and sometimes scary, but I've made some sort of peace with this ever-present albatross of weird, which makes it easier to endure, somehow. So, I'll be riding it out quietly, like a survivalist in a storm, secure with my knowledge that the migraine will end and I'll still be here. Fingers and all.



More...

Another Food Post

Grocery shopping is the worst.

I've learned to adapt, for the most part. For the glaring overhead fluorescents, I wear a hat and have my sunglasses handy. For the obnoxious piped in music, shrieky fellow customers, and inter-store announcements, I bring earplugs. For the nausea triggered by the car ride to the store, and then the stench of the laundry/cleaning/air freshener/perfume sections and other patrons, I keep ginger or mints on me. For the overstimulation of all of the above, plus deciphering product labels, I medicate liberally beforehand. I always bring a sweater, in case the air conditioning is too cold.

Besides physical preparations, there's some mental prep involved in even simple trips. I have to stay focused, go straight to what I need most because there's no telling how long I'll last. I have to stay as calm as possible, so I can't let the guy who was weirdly aggressive about getting around me to the soup bother me. Once I've finished getting what I need to get, I skedaddle the heck outta there and wait in the car for my man to check out. Thank you, Man, without you, I would surely end every shopping trip by crying or threatening to barf on someone.

Our local CSAs don't come to your door, but they sometimes have a "local" drop-off point, which I may or may not be able to make it to every week, as migraines and gas money would dictate. If I missed it, I'd lose my food, having already paid for it. There's a chance that they'd accommodate me, make an exception and deliver to my door, or allow me to pick it up on off days, but I haven't yet explored those options, because there is one more hurdle to the CSAs that I have to overcome and that is money. I just don't have enough.

In a perfect world, food stamps would be redeemable for all the fresh, local, organic produce a person could eat. (When the government isn't shut down and people are actually receiving them, that is.)

But in the real world, we make do. Which, in our case, means making the most of our local (within 10 miles), but rather pricey grocery stores, the slightly cheaper chain, Safeway, that is more than half an hour from home on winding roads of barf, and costco -- which is the furthest distance, at about 45 minutes from home, but it's the best option when we can make the trip.

And, we are so incredibly, astoundingly lucky that we have the option to visit a free farmer's market three times a month, and we usually make it to at least one. It's hosted by Mountain Community Resources, an amazing organization that helps people with all sorts of services, but these farmer's markets are the best thing I've ever seen a charity do.

We've visited food pantries before, and while we'd usually come away with enough food to live on for at least a week, this wasn't food that keeps people healthy. It was all cans and cereals and processed meals and more than one time there wasn't a thing in the bag that didn't have hfcs or some kind of preservative in it. That food was depressing and unhealthy. I would almost have been better off not eating at all. Almost.

Of course, I needed to eat. So, I did. And I felt terrible all the time. I clearly remember the despair I used to feel on nights when the fridge was lean and I struggled to make a dinner that would actually nourish us.

I never, ever forget how lucky I am now to be able to take advantage of all this donated fresh food. Sometimes the produce is less than stellar; one time half the strawberries were moldy, and another the tomatoes were about to burst, they were so ripe, but on the whole, they offer quality produce, and you can't beat the price. Last week, they had massive, perfect portabello mushrooms, and brightly colored, delightfully misshapen bell peppers of all colors, and it was better than christmas. That haul inspired me to make some phenomenal vegan enchiladas.

Oh yeah, I've cut out even more of the animal products, and I'm happier about it than I thought I would be. No cheese at all anymore, very few eggs, and little dairy otherwise, I feel better without it, and don't miss it at all, surprisingly.

I've been thinking in a more conscious way about the products I buy and where they come from, and what effects those products have on me, the economy, the environment, and what impact I'm personally having on this planet. I'm a little obsessed with personal responsibility right now. I want my impact on this world to be beneficial, not harmful, I want to leave a positive mark, if any. So, first I stopped buying the regular eggs (because I'm against chicken torture), then I stopped eating cheese (made with rennet, which is baby cow stomach enzymes! WHY!) and my gut started working much more smoothly, and my skin got this unreal glow to it that I haven't seen since I was a teenager, without the zits (well, still a few, but that's ok) and then I dropped a pant-size or two within two weeks and my energy BOOMED.

I'm hiking our hill most days now, and every now and again I'll go up more than once. Pushups, situps and yoga are happening more and more frequently as well, and even on bad days, I'm trying to do low-key stuff, just to keep my body limber. I even ran in place for like, ten minutes the other day! Unbelievable!

Baked goods are still my dairy-downfall, because I'm not eating them often enough to warrant searching out and testing vegan recipes. I've been indulging in the standard fare, whatever my boyfriend brings home, save for the ice cream. But let me tell you, vegans aren't missing a thing when it comes to ice cream. We have this stuff in our local grocery:

It's called Luna & Larry's Organic Coconut Bliss and every flavor I've tried of their delightful coconut ice cream has been an impossible pleasure. The chocolate doesn't taste like coconut at all to me, but the less powerful flavors will definitely have at least an undertaste (if that's a thing? I think it's a thing) of fresh coconut, not that I ever complained. It's pricey, so it's not a frequent treat, but oh is it worth every penny. It's better than dairy ice cream and everyone should eat this. Unless you have a coconut allergy, like my poor boyfriend does. Doomed to a life of dairy ice cream, that one. More for me.


More...

Back to School

I actually didn't expect to get a summer vacation, since I opted to take a class over the quarter. I'd misread the calendar, or a class description somewhere along the line, and I thought I'd only get a week break between quarters. So, imagine my delight when the fairly stressful summer quarter ended and I found myself with over a month to squander!

I slept in, I binged out on Star Trek and word games and the sookie stackhouse books (which I really enjoyed and highly recommend, I warn potential readers that there are some heavy moments involving sexual assault, torture, and other themes of sex and violence, so the series may not be for the squeamish or trigger-sensitive, but the fun shines through the dark spots and the series made for a fantastic summer indulgence). I took the dogs for long, aimless walks on our mountain, I did a little sewing, a lot of cleaning and organizing, and loads of guilt-free lounging. Okay, not totally guilt-free, hence the cleaning and organizing, but mostly I made myself enjoy the down-time, I so rarely take the time to relax when my head doesn't force me to, it was really decadent to enjoy my favorite idle hobbies without a haze of pain constantly surrounding the experience.

Anyway, it was great, but I'm glad to be back at school because as of getting an A in this class, which I fully intend on doing, I'll have raised my gpa above a 2.5, which is the lowest threshold to start qualifying for more scholarships. A qualifying gpa is no guarantee, but my it'll give me more options and I'm so excited to finally hit this milestone, I keep calling it my christmas present to myself.

As soon as my school posted the available classes for fall, I'd researched what I could and should take, then fired off emails to the teacher of the class I chose (poli sci) and my counselor, advising them both of my plans and my need for captioned video and audio content. I am very happy to report that I received an excellent, professional response from each, and my first few assignments have all been adequately captioned, with no further interference from me. It's wonderful not to have to worry about accessibility, and I'm more hopeful than I've ever been about my future education experience.

The class itself: meh. It's political science, and I thought it was going to less american government and more social progress in terms of politics, but apparently I was mistaken. I'll survive. This is my first totally uninteresting, dry, academic class (sorry american government fans, it just doesn't do it for me), and I'm just glad I researched the teachers ahead of time because if I can't take a fun class, at least I can have an effective teacher.

I've encountered a few issues with getting settled into the new quarter, but nothing too serious. We tried to take care of my text needs early, before the rush of the first week of classes, but the disabilities office was inexplicably closed, and since they are the source of my book scholarship paperwork, I couldn't do anything until they reopened. So, we finagled the gas money to make it to town again, during the first week of classes, but discovered that the school's bookstore ran out of one of the assigned texts. While it's available elsewhere, I'm reliant on that school-sponsored book scholarship to be able to afford my textbooks every quarter, I can't go anywhere else. So, now I'm approaching week two, sans book. Thankfully, my teacher is agreeable and the text isn't necessary for survival the first week. Now we just need to have the gas money to go to the school AGAIN. UGH ANNOYING.

We've done all the requisite complaining that a person does when faced with a situation like this. Why must I pick up my approved voucher in a place that is not the bookstore, why can't they have it stashed somewhere? Or, why can't i receive it digitally? Why would the disabilities office be closed right before fall quarter starts? Why can't I order my books online (like students with a credit card can), or have them mailed to me? Why can't I have access to the bookstore before it becomes a madhouse of teenagers? These are questions that do not have answers, but hopefully by asking them something will change, eventually.

Things are getting better, but there continues to be plenty of room for improvement.




More...

Forgotten

The people in my life are generally good about inviting me to things, even if they suspect I won't attend for whatever migraine-related issue, but in the past week, I've been forgotten twice, and the two experiences were so different, I've got to talk it out.

So, the first one I found out about the day before the party. I asked why I hadn't been invited, the answer was that the occasion would have been noisy and it was thought unlikely that I would attend. I agreed that this was true, but asked to still be invited in the future, because while they may be right, I still like to have choices, and to know that I'm included, even if I can't join in. My friend immediately understood and promised to invite me forever after.

It was the simplest conversation, literally lasted three minutes, and left me feeling really good about my friends.

Less than a week later, I woke up in the morning, loaded up my facebook to see what all the cool kids were up to and my heart sank when I saw that there was a decent-sized family party the night before, for my grandfather's birthday. No one mentioned it to me, and the really frustrating part of it is that I could have gone. I was already in town for another reason, and plenty medicated enough for at least a stop-by. I would have loved to have given my grandfather a hug on his birthday, but I was denied the choice.

So, I sent an email to my grandparents, apologizing for missing the party and explaining that I didn't know about it. I'd emailed the morning before, to say happy birthday, but obviously hadn't mentioned the party because you can't rsvp to something you aren't aware of. The message I sent was bland, and ended on a good note, with an "i love you", but I also sent my mom a quick text to tell her I was actually really sad about it.

Being way up in the mountains is great for my head, but I get so lonely sometimes, I can't breathe. I rarely get visitors, and trips to the city are hard enough on me that socializing becomes more of a painful chore than any kind of fun, so the few social interactions I do get, I relish and savor and try to milk for all they're worth. Being so starved for human contact, after a lifetime of being surrounded by a huge family and a myriad of friends, has been really hard. I haven't considered myself an extrovert in years, and I do enjoy solitude and quiet, don't get me wrong, but I'm also deeply lonely.

So, when everyone wrote me back with the usual excuses of the venue being too loud, I was really not interested. When I replied, I ignored all that and just asked for a make-up date. That was the end of the issue for me; I was disappointed, but I'd gotten my point across and I'd resolved to move on with my day.

It hasn't ended there, though. There have been more emails and phone conversations and more apologies. Which, okay, except I hate those apologies that feel like they're more about the apologizer than the apologizee. The ones that go,"i'm so sorry (if) I did that! DO YOU FORGIVE ME?????" And then the apologizee is expected to immediately comfort the apologizer so they no longer feel the horrible burden of being Wrong. This is what these emails and phone calls are feeling like, as if I'm suddenly in the middle of a bizarre drama in which I'm expected to make someone feel better for leaving me out. Which I'm absolutely not going to do, so this lunch we've got planned in a week might be interesting!

Writing this all out has been really helpful, I've deleted most details to protect the guilty, but before I did I took a hard look at them to try to discern if this second situation was more emotionally charged because it was a family party I'd missed, if my hurt and loneliness were showing too baldly, if somehow I should have addressed the issue differently, but no. It's not me that's making the difference in this situation.

Oh well, people process things differently, I'll just have to let this thing blow over however it does and hope that the important issues haven't been lost in the overwrought drama of it all.

Don't forget me, please. I'm may be quieter and may be far away, but I'm here.



More...

Thoughts on TNG and Agency

Well, Star Trek: The Next Generation made it to the seventh season before I felt the need to write about its problems. I'd love to say it's because the writing is so progressive, I have nothing to complain about, but it's much more true that after The Original Series, I was just relieved that the women had real jobs and weren't all yeomen in tiny skirts taking drinks orders.

On the downside, Deanna Troi's uniform for the first six seasons is ridiculous, and they hardly ever reference her rank, which is Lieutenant Commander, btw, equivalent with Data and La Forge. And La Forge is a total Nice Guy, has really creepy relationships with women, and actually got a woman to apologize to him for being offended at his serious invasion of her privacy and agency ("Galaxy's Child", Season 4 ep 16), while never really apologizing to her for his inappropriate behavior with her holographic double ("Booby Trap", Season 3 Ep 6). I spent those episodes making this face: :/

I love Troi and Riker's relationship, they are supportive and loving, even while they know they can't be together. I LOVE Pulaski, her defiance of authority was a joy to behold, particularly since the actress was one of the many women used as props and foils on TOS. I love how the franchise recycles its actors, it's a delightful scavenger hunt to find actors from one series playing a different character on another.

I have a love/hate relationship with Dr. Beverly Crusher, and that makes me love her even harder. I can't help but be interested in characters that aren't written as simply good or bad, characters that have enough depth to make me feel conflicted over them, especially female characters, because let's not kid ourselves, we still aren't getting enough real-life representations of women in the media. Dr. Crusher could be shrill, pious, and stubborn, and something in the actress' speech has always tripped me up, and of course, there's the awkward ghost sex. ("Sub Rosa", Season 7 Ep 14). But her smaller, subtle moments are quite beautiful and I'm enjoying her relationship with Picard immensely.

Ensign Ro and Guinan have been favorites of mine since childhood and I'm so happy that they've held up over time. Guinan is even better than I remember and Ro is almost painful to watch, the actress plays her so raw. Worf has somehow become a major favorite, when I was a kid I was bored by his storylines, but now I kind of get him. And of course, Worf has the best comedic moments, and I'm a sucker for a laugh.

Riker constantly reminds me of James T. Kirk, or what he could have been if Shatner hadn't smarmed it all up. He likes the ladies, and he's only a little gross about it, and he can be condescending, but compared to Kirk, he's downright respectful. He's confident, brave, and sometimes brash, but he makes room for other people, whereas Kirk (or maybe Shat) was fighting to dominate every scene.

And I love Picard more than anyone ever. Patrick Stewart makes TOS what it is.

Wow, that was a lot of Star Trek feelings, and I haven't even gotten to my point yet.

MY POINT:

I just watched a Data-centric episode called "Inheritance" (Season 7, ep 10) that really pissed me off. In it, Data is reunited with his mother, Juliana, the woman who helped his maker, Dr. Soong, create Data and his brother. Over the course of the episode (SPOILERS FOR A 20 YEAR OLD SHOW WATCH OUT) Data finds out that she is actually an android as well, the human Juliana died and Dr. Soong created her in his dead wife's image, with his dead wife's memories. He designed her to appear human in every way, including to eventually die of whatever natural causes, and never told her that she was an artificial life form. Dr. Soong's holographic projection implored Data to continue the ruse, so she could live out her life "happily", as a human. So, Data had a decision to make.

I just knew he wasn't going to tell her. To their credit, the senior staff had a meeting and presented all the issues of agency that are making me feel sick to my stomach, but Data chose to keep her ignorant in the end, and it was coated with a nice veneer of romanticism and a son's caring for his mother. AND she was played by the glorious Fionnula Flanagan, who is such a badass in so many of her roles. It is very upsetting to me that they just sent her on her way, to live her life in ignorance of her own state of being, to possibly find out in some other way anyhow. Oh, this episode ticked me off.

It's like not telling a cancer patient she's terminal, under the guise of letting her spend the time she has left happy. Except, that's taking away a person's choice. That dying person might want the opportunity to say goodbye to a certain person, or to go sky diving. Juliana might have wanted to be a super-cyborg if given the opportunity, maybe she'd have wanted to be reprogrammed to run search and rescue operations, or to obtain scientific data from extreme situations, or maybe she would have decided to live out her life as a regular old lady with a more interesting past than most. But, they took away that choice for her, and I really, really wish they had gone the other direction.

But no. She smiled beatifically at her son from the transporter pad, satisfied that she had made good on her relationship with him before she left him again, probably forever, completely unaware of who she was. I felt sick at his betrayal, that the whole room knew she wasn't human, except for the woman herself.

Bringing it back to the blog: There's a loss of agency that happens when a person is as sick as I am. I can't make decisions for myself all the time, and with the significant cognitive impairment that often comes with my migraines, I feel vulnerable letting myself be taken care of by others. I don't want to be cared for like a child, and I want to be the person who is the most in charge of my life. Like Juliana, it would be too easy for those with more power to manipulate my life to suit their needs, and that is very scary to me, though it's never happened to my knowledge.

Our right to choose how we live our lives should be one of our most sacred birthrights, but too often, when a person is disabled (or any minority group, really: gay, black, female, etc) their agency can be taken away without a thought, because the majority always knows better.



More...

Music and Noise

Music is usually painful, since migraines. But, I've discovered that when my head is just right, and there are no competing noises to worry about, I can enjoy it almost as much as I did back when.

My sound sensitivity started decreasing as soon as we moved away from the constant influx of the city. It's often completely silent in my neck of the woods, save for the birds, cicadas, and the cracks and creaks of normal woodland movement. We can hear the neighbors, but only distantly. I wear earplugs a few times a month, if that; when we have tree work done, or my boyfriend is snoring like an aspirating wildebeest, for example. And I feel like my noise tolerance is much better for traffic, and other conflicting sound situations, but once I hit my tolerance, however improved it may be, it's the same old story, so I still have to be very careful.

Music's been out of the question for a long time, and that means no radio in the car, no ambient, background tunes while we socialize, and no live shows or festivals featuring live music. The clash of instruments, certain pitches of horns or vibrations of bass can make my nausea, dizziness and head pain immediately disabling, so after a few punishing attempts early on in my migraine career, I resigned myself to a life without music.

It was devastating, and only one of many horrible realizations I made about my migraines and my future at about the same time. I loved to sing (terribly), I loved to dance, I loved to blare my favorite song over and over, so loud that I couldn't hear myself think anymore, and all I could feel was the rhythm, in my bones and in my blood.

I didn't try to listen to music again for a long time; after I'd grieved its loss, I tried not to think about it so hard, and I nearly missed it when it came back to me. One day, a few months into my newly quiet life, I started noticing that I could listen to the tv at an audible level, still quieter than most people, but captions weren't absolutely required to be able to catch all the dialogue. (My sound sensitivity may have improved, but my aural comprehension is still in the tubes, hence the need for captions at school. I felt the need to clarify.)

I caught a few music videos one morning, I remember Rihanna's We Found Love in a Hopeless Place and Adele's Rolling in the Deep both made me stop and stare at the tv. Later, hope fluttering my heart, I opened myself up a free Pandora account and made an Adele channel. Earning my love forever, the first song it played for me was Rolling in the Deep and I am not ashamed to admit that I cried like a baby while dancing and singing to it. It wasn't as loud as I used to play it, and I couldn't quite holler-sing like I used to, but it was the happiest moment I'd had in a long time.

Twirling, dancing, singing as loud as my head would allow me, the dog staring and wagging her tail uncertainly, and my whole body, my whole being felt so good, so in tune with life around me, so vibrant with passion and joy. The freedom of it was decadent. It still is.

I've taken to putting on music when I clean, and it makes the chores go by so much faster. I'm still pretty limited, and I have all sorts of rules for keeping music within my tolerable ranges. Like immediately skipping songs if they are even slightly annoying to my ear, because certain pitches and vibrations just do not work with this head of mine, and there is no talking while the music is on, because competing noises are truly my kryptonite; but I will absolutely take what I can get.

My current musical obsessions are the song, Royals by Lorde, the Rolling Stones, and old R&B. Pandora is great for the ability to skip songs and make my own stations based on my likes and dislikes, but their player is difficult to use on my PC with my color settings, and their commercials tend to be excessively loud, but not too frequent, even with a free account.

I'm so fortunate to have been able to reclaim music; it's an easy source of endorphins, a great stress reliever, and helps me feel a little more connected to the world.




More...

Diet and Exercise

I love talking about food.

I've been eating pretty healthily lately, and I'm proud of that. After a paper I wrote about plastic in the ocean and how microplastics are already in our food chain, I couldn't help but turn into a strict vegetarian. I've been some form of veggie since I was fourteen (twenty years ago, OMG!), even turning vegan for a few months when I discovered I was lactose intolerant, though back then that meant I subsisted on ramen and trader joe's veg potstickers. That didn't last long, and I was back on cheese as soon as I discovered those little lactase pills. I started eating fish again, occasionally, around 18, and that was my diet for the next decade and a half. No mammals or poultry, but seafood and dairy were all open season.

So, this recent change has been dramatic. I'm not quite vegan; I still consume dairy very sparingly, and eggs occasionally, and honey. I'm approaching food as more of an ethical vegetarian, I guess. It's a plant-based diet that I'm aiming for; it's not about what I'm not eating, but what I am: lots and lots of veggies, fruits, legumes and whole grains.

I've also discovered the concept that there are no healthy oils, so I've stopped cooking with them unnecessarily. I dry-fry my onions, garlic, potatoes, mushrooms, and and peppers, adding small bits of broth to deglaze, and the flavor is astounding. I've been taught my whole life that fats are necessary for cooking, so this realization that I don't need them at all, and then discovering how much better I feel without them, and how great my food still tastes, it's rather a kick in the head.

Learning to cook with a variety of spices has been essential for the success of an eating plan like this, after a lifetime of gooey pizzas, rich desserts, and salty, savory, greasy snacks, my palate isn't accustomed to the simplicity of, say, confetti rice with lentils and veg, without adding a healthy smattering of chili powder, cumin, salt, parsley and thyme.

Mmmmmm, that confetti rice was good, too. And not at all boring! The next day, I took the leftovers, mixed them with some homemade tomato sauce and some more herbs and spices, and made twice-baked potatoes, which were incredible! Other favorite dishes of late have been roasted radishes and brussels sprouts, grilled mushrooms, steamed artichokes, hummus pizza, pesto made from carrot and radish tops, and brown rice cooked with homemade broth.

My very omnivorous boyfriend has been really supportive, when I expressed anxiety that he's not going to want to eat my veganish food, he suggested I cook for myself and only worry about WWBAMT: What Would Boyfriend Add Meat To? Which is amazing, and he eats most of what I'm cooking lately.

Of course, every change in my life has an effect on my head. This one isn't so direct, but since I dropped the oil, my stamina seems to have increased quite a bit. I'm hiking with the dogs nearly every day, going farther and harder, and even breaking into a run in flat spots. I still have to rest for hours after a hike like that; I'm not normally in horrible pain, but I do often experience increased nausea and dizziness from working out more strenuously, and it'll last all day easily.

But, a little barfiness is small potatoes to being able to get my heart pumping and my sweat on for upwards of half an hour. It's nothing short of phenomenal to me that I can do this much. It took nearly two years of living in secluded silence to work myself back from the ravages of the sedentary confinement I'd been subjected to in the middle of the loud city.

Being able to go outside is still amazing to me, some days.

This morning, when I realized I'd made it to the top of our hill without stopping to rest, not even once, I could have cried. It's been a long road, but my progress is finally tangible, and it feels so good to have some measure of my health back.

More...

Migraines of a Forgotten Era

I've had migraine symptoms since I was a child, but no one ever called it that. "Sick headaches" was the closest anyone in my family ever got to saying migraine, and I remember my grandmother telling me that was what I had, as she lay a cool rag on my forehead and told me in the quietest voice I ever heard her use that I just needed to go to sleep and I'd feel better when I woke.

It can be an odd feeling to look back on memories with a new perspective, whether it's realizing all those seemingly unrelated and random symptoms were actually connected by a common disease, or that your parents weren't really wrestling that time you barged in at six am. The dawn of understanding sheds a light on our experiences that may not always be flattering, but damned if it's not interesting.

Another vivid migraine memory is of riding in the passenger seat of my mom's car on the way to school, and the sun being so blinding and bright, it was intolerable. My eyes would water and shut involuntarily, and all I could do was cover my face until it passed. It felt like a sort of eyeball/brain-seizure -- with the same buzzy feeling I've mentioned before that accompanies some of my weirder symptoms -- and the pain was terrifying. It would only last a few minutes, and it didn't happen often, but it happened more than once on the ride into school.

I've seen halos around lights for as long as I can remember. Streetlamps at night, in particular, would trigger this effect. I always thought it was pretty.

Sleep disorders aren't strictly migraine-related but they are more common in migraineurs. When I was small, I experienced night terrors. I grew out of that to become a sleepwalker. It was pretty frequent when I was a kid, I'd wake up in weird places or hear stories the next morning about the strange conversations I had with someone.

All of the symptoms and migrainous events I can remember from childhood were directly related to stress. I was tired, or had been in the sun too long, or I'd been crying. While these symptoms were frequent enough to be familiar, it apparently didn't seem worthy of any significant mention to my parents. I can only recall experiencing one "real" migraine before they went chronic on me -- no wait, I just remembered another.

In high school, I was at color guard practice in the morning, and the sun was bright as hell. We were in the middle of learning a new routine when my head went swimmy and I was confused and pissed off for no reason, so I sat down, refused to twirl my flag anymore, and started crying instead. My head hurt, but it was in the background, mostly I was confused. I couldn't explain what was wrong, I had no words, and my coach sent me to the nurse's office. It was a morning practice, before classes, so the nurse wasn't there yet. I sat on the floor outside her office and cried some more until an older student walked by and asked if my head hurt. I remember being so relieved that she had asked me that, I never would have been able to tell her if she hadn't said the words herself. I tearfully nodded and stopped crying, suddenly much less freaked out. I don't remember the rest of it, whether I made it through the day or the nurse called my mom to come get me. Maybe she just let me take a nap, because I actually remember doing that quite a few times over my school career. I was always on a first-name basis with the school nurse. Huh.

I've probably always had migraines, I just never had a name for it.


More...

Clotheslined

So, our clothes dryer died and I've never been happier to be in the middle of summer.

Line drying clothes is more labor intensive and time consuming than using a dryer, but it's not impossible and is preferable, in some ways.

My clothes are never wrinkled if I forget about them on the line. We use less electricity. I get a little exercise putting the clothes up and taking them down, and it's an excuse to putter around outside, which is almost always good for me.

But, on my bad days, the extra labor makes laundry that much harder to tackle. Reaching to hang and retrieve from the line, bending into the hamper, the sunshine peeking from behind the trees at me when I least expect it, and the negotiation of our often treacherous hillside all require a certain level of physical and mental stamina that migraines can take away very easily, and suddenly.

And once winter comes, I don't think line drying will work very well at all. Our shady, often damp section of the forest isn't at all ideal for line-drying, because even in the middle of summer, it takes about 12 hours to dry cotton t-shirts, and often more than 24 for jeans. Once the temperature dips a few degrees, or the rains hit, I have no idea how I'm going to get our clothes dry. I've got my eye on craigslist, so hopefully a used dryer will pop up before then.

In the mean time, I'm counting myself lucky that it wasn't the washing machine that went out. Or the dishwasher. I love you guys, don't ever leave me.


More...

Medical Edibles

Marijuana-infused edibles have become an invaluable part of my self-care routine.

I'm no stranger to the common brownies and cookies that are sold at every dispensary, but nausea comes along to my migraine parties and sometimes those rich foods are impossible to gag down. At home, my boyfriend makes me ginger cookies, which are a near-perfect delivery system, but if we're out and have the cash, we'll sometimes check around and see what the local guys have for sale.

And I'm rarely impressed. Massive cookies, or syrupy hard candies, or the uber-chocolate-explosion-cocoa-mouthbomb-death-fudge-brownies are not at all what I'm looking for when my head hurts and I feel like barfing on everyone around me.

Sorry for talking about barf during an edibles review. But, it's pertinent, because I finally, finally, FINALLY found something in a store that doesn't exacerbate my barfiness. While visiting our favorite local dispensary, my boyfriend was gifted a sample of these delightful "ginger bites" by lifted elevated edibles. The packaging states that "all ingredients used are vegan, gluten-free and organic", which I appreciate, as a vegetarian trying to cut down on her GMOs. The texture is a soft, dense cookie, with bright flavors of cranberry, lemon and ginger that really pop, in a small size that makes ingestion quick and easy, with not a trace of cannabis flavor to be found. It's a two to four dose, which is a pretty subjective measurement in the medical cannabis world, but I started with half on a moderate-bad day, then ate the rest an hour later when my head was unfazed. A half hour after that, I was feeling pretty fantastic, so I cooked dinner, cleaned the kitchen, and wrote this review with no additional medication for the rest of the evening. On a moderately bad day, these things individually are very difficult, so to be able to accomplish all three, then sleep awesomely and wake up smiling, it feels like a dream I don't ever want to wake up from. I don't review most of the edibles I try anymore, because our homemade version has outshone everything by miles and every review would be the same, "Too big, too barfy." Until now. I love these ginger bites and would use them all the time, if I could.

When the edibles hit me right, I feel practically normal. My head still hurts, but often only if I look for it, or really push it, and I'm still nauseated, but to a lesser degree. My body weariness largely fades away, my mood brightens, and my stamina blows me away. If it's been a while since we could afford for me to medicate this way, I can actually get weepy from the relief edibles offer. To suddenly have the freedom to do a thousand things I'd been unable to, marijuana is truly a miracle drug for me and I need to throw a quick shame-on-you to the FDA or DEA or whoever it was that decided marijuana was bad and restricted it so heavily for so long. JERKS.

But, there are two factors that keep me from medicating consistently with edibles: The first is tolerance. An effective starting dose of edible cannabis is a high one -- much higher than a person could smoke comfortably in a sitting -- and after only a few regular doses a person will start to notice that they need more to get the same effects. And if a person suddenly stops taking regular doses, especially higher doses (which are inevitable if a person medicates regularly in this fashion), withdrawal effects can be uncomfortable for up to a week. (Of course, note that I describe the withdrawal experience as uncomfortable, not painful, not unendurable, never permanently damaging, and certainly much less dramatic than getting off the average anti-seizure, anti-psychotic, anti-depressant, or narcotic. The only withdrawal effects I've ever experienced are irritability and a decrease in pain tolerance, which were only bothersome for a few days, if that.)

The other barrier to regular medicating via cannabis is the cost. Store-bought edibles can run from 5 to 20 bucks a dose, which isn't something I can pay easily. Honestly, the only reason I can afford to medicate the way I do (instead of taking whatever Medicare will give me, which is nothing much useful anymore) is because we live in a sort of "green belt" in which every other person we know here grows and sells their own medical marijuana and half of them are super into bartering with my man for things like car repair, which is pretty amazing. It's all above-board with licenses and verifications, but it's much, much cheaper than the dispensaries, for often the same quality.

I'm very lucky to have the access I do. The difference in my quality of life can not be undersold: before marijuana, I was merely surviving, now I can actually live.




More...

Friendship and Illness

I must have rewritten the email ten times.

It took me countless attempts and tears; I was anxious, afraid of saying all the wrong things and being rejected. I wished I could just hide and never have to tell anyone my horrible secret ever again because I'm just so embarrassed at being sick, at being weak, that I would almost rather alienate myself completely from everyone who "knew me when" than have to face their pitying or disbelieving looks. Or to have another person fade away, having apparently decided that a relationship with me is too difficult.

I came across some old pictures of my group of friends from middle school, so I scanned them in and emailed them out. One of the girls, the one I was closest to back then, emailed me back and suggested we meet up. I think she knew about my chronic migraines already, I saw her briefly when they first started, but while working out how we were going to rendez-vous, I realized I was going to have to come clean about how sick I am.

It just filled me with panic. I feel so ashamed, like I'm back at the beginning of getting sick where I think it's all my fault and wish I could wish it all away, so instead of anything productive, wishing becomes a huge distraction. I'd start writing the email, crumple into tears and wishes, and close the window without replying. Again. It took me a while to finally compose a simple message, and when I finally sent it, my anxiety only increased.

How would she receive it? Would she think I was a liar?* Would she never write back and tell all of our old friends that I'm a freak? Am I back in high school or am I a 34 year old woman who's been dealing with chronic illness for over six years? Back in high school, then? Well, I guess bring on the anxiety.

*Okay, if she thinks I'm a liar, she's an asshole and I don't want to be friends with her anyway, but still. Not to be believed by someone you love, or once loved, it hurts more any migraine. I'll never get used to that pain, and I think it actually hurts worse every time it happens.

So, maybe she'll be like, "Whatev, I'll just accommodate her and we'll hang and be bffs 4 eva." Or maybe she'll go, "Huh, steph is clearly a big weirdo now and I'll have to think on this." Or maybe I'll never hear from her again.

If migraines have taught me nothing else, I know that as creatures in this vast universe, we aren't entitled to a damn thing in our lives. Friendship, health, food, freedom - so much of it is luck, it can be terrifying and lonely to realize how vulnerable we all are. But I don't have a choice, I hunger for food and for friendship, so I have to keep searching them out, no matter how starved I become or how toxic it all seems, I know there are nourishing relationships still to be had, and have them I will.

More...

Short Hair

I cut all my hair off again.

We cut it at home, my boyfriend and I, and we're both kind of shocked it came out well. I wrapped an old shower curtain around me, we buzzed the sides and back to an inch and scissor-cut the top into long pixie. I like it very much. Oddly, this short style feels more feminine to me than my long hair did and I actually feel more comfortable with short hair, though I've had hair past my shoulders for 95% of my life.

For a while now, I've been feeling disconnected from my own image. Pictures don't look like me, though I know rationally that they do. Even the face I see in the mirror only resembles my own. She is older, sadder, fatter, uglier, and I feel bad for that woman whenever I catch her image. Her clothes fit badly, her hair is unstyled, and she always looks tired. As a person who has struggled with body image and disordered eating, I've been unsure how to become comfortable with myself again.

But, cutting my hair has helped realign my mind and my body somewhat. I look in the mirror and I'm finally seeing myself again, not just a haggard, sick, fat, old, tired version of myself, but the real me. I mean, I can still see the weight, the exhaustion, how migraines have affected me and how my skin is changing as I'm seeing the first signs of middle age approaching, but it's not all I see. My face is mine again, without all that weight attached to it. Who knew I was just trapped under all that hair?

I do miss elaborate braids and wearing it all fancy, but I haven't been able to wear my hair like that in years anyway, my constant scalp tenderness makes any but the loosest of low ponytails intolerable. Besides, I'm always wearing a hat outside the house, what's the point of styling my hair to just smush it down?

I was hoping to see some migraine benefits from lopping it all off, but no dice. In fact, I've had a tension-like headache around the back of my head ever since we cut it, almost as if my scalp misses the weight.

The reactions I've gotten from other people have been entertaining. My mother hates it, but she always hates my hair short, so part of the fun of cutting it has always been watching her battle against herself to say something nice. She fights the urge to criticize me, and I know it really bothers her that HER mother (my grandma) gives my mom a hard time for straightening her hair, so she recognizes the pattern enough to not want to repeat it. My grandma thinks curls are THE THING and can't imagine why anyone wouldn't want them and makes a comment nearly every time they see each other. Therefore, my mom strives to be supportive of my hair choices, but sometimes makes this pursed-lips disappointed face, sighs, and touches my head like she's wistfully recalling when my hair was past my butt and took up HOURS of every day. I will never have hair that long again, sorry mom.

So, for the success of my new short 'do, I would like to thank the following people: Anne Hathaway and Ginnifer Goodwin for sporting the same style and being photographed from a thousand angles. The hairstylists I used to work for, and their techniques that I copied. Youtube. My boyfriend, for his epic patience. And C, for buzzing her own head and making it look like NBD.

Cutting my hair off was a feminist act, for me. So many people have discouraged me from going short, they said my face would look fatter (oh no!) or I would look like a lesbian (OH NO!), and those people were both assholes and wrong, because going shorter actually frames my face better, and sexuality can not be determined from hair length.

Moral of my story: If you want short hair: cut it. Or pay someone else to, but don't listen to the naysayers. It's hair, worst case: it'll grow back.



More...

Yes, We Cannabis!

Sanjay Gupta came out adamantly against marijuana legalization in any form in 2009. In a segment with Piers Morgan last night, Dr. Gupta completely changed his position, and expressed support for use by patients, stating that "sometimes marijuana is the only thing that works."



(In case there are any embedding issues, here's the link: http://www.youtube.com/watch?v=shIgg42cTME)

This is just a short segment, twelve minutes of empathy and information from Dr. Gupta and Piers, interrupted occasionally by some truly illogical anti-marijuana arguments from a suspiciously crackpotty naysayer. Can they not find someone legit who doesn't like pot anymore? I don't normally watch Piers Morgan, though, maybe that's just his format.

Anyway, Dr. Gupta is airing a documentary on CNN this Sunday, August 11th, called Weed, and I know I'll be watching.

Marijuana is the only thing that helps my head. Painkillers, migraine abortives and preventatives only made me sicker, if they did anything at all. Marijuana eases the pain, the nausea, the irritability, and exhaustion of migraines, it dulls the outside stimulus that can cause me so much pain, and relaxes the tense muscles that can exacerbate a mild irritant into one that flattens me for a week. I smoke pot so I can do the dishes, walk my dogs, do some laundry, do homework, or participate in life in any meaningful way. The stereotype of a pot smoker is someone who lays on the couch watching TV, eats incessantly, and never gets anything done. That's me without pot. Migraines render me useless and inert. Marijuana enables me to get up and have a life.

It's nice to have the outside world validate my experiences.

More...

Diversions, Entertainment, and Preoccupations

Self-distraction is the most surprising and valuable survival skill I've developed from dealing with 24/7 migraines.

My favorite, but least used form of distraction is reading. I can't remember not being able to read. I learned at a very young age, and used to compulsively read everything in my sight. Actually, I still do that. But since migraines, my eyes ache when I read for long periods, and I often have trouble focusing on what I'm reading. Because I have to do a fair amount of academic reading for my classes, I've been gravitating towards lighter literary fare and have been relishing the opportunity to read the Sookie Stackhouse books. They are some awesome, fluffy fun.

When my brain won't let me read, but I'm not quite willing to go totally inert in front of the tube, I play me some thinking games! Puzzle, room escape, hidden object, word games, adventure, anything that involves exercising my brain and I'll love it. I play online, free, usually at gamershood.com.

Of course, I spend quite a bit of time without the capability of thinking, and then I turn to tv and movies. I'm still watching TNG, on season 4 now, and on some recent bad days I binge-watched Orange is the New Black and Orphan Black, which are my favorite new shows and I want more episodes now. It's odd that they both start with O and end with Black, makes my brain skip a beat whenever I look at the titles together.

When I'm capable of physical exertion despite my head, I've found therapeutic benefits in cleaning. Our kitchen is full of shelves of boxes and stuff to be sorted from my boyfriend's mom, and I've finally turned back to it this week. I've organized the kitchen stuff and seriously purged my sewing stash, which has been inaccessible since we brought all this crap home. It's still cluttered in there, but I'm finally making progress again, and seeing the results puts my brain in a much happier place. I may go very slowly on this project, but I'll get there.

Clearing out my sewing stash has inspired me to create a few scarves out of old shirts and I even did a little dyeing to save some items from the bin. These were some easy-peasy crafts, fun, not requiring much brain-power or physical exertion and the result of having something new to wear or use at the end of it is such a happy bonus. And even if it doesn't work out, the dye doesn't take or I botched the sewing big time, I get to add it to my out-going donations pile, which is also extremely satisfying.

Other excellent sources of distraction are our sweet, funny puppies. Having another dog in the house has been a challenge but such a joy. Both dogs have social issues, so it's taking them longer than I expected for them to get used to each other, but after more than two months together, they've finally started playing. Not often, and they both still freak each other out sometimes, but when they get the hang of it and start chasing each other around, my smile goes so wide my head might just snap in half. In a good way.

It's been a rough month for me, and I remember musing last summer that perhaps I get the opposite of SAD, because my bouts of depression in the summertime are intense, and much harder to get over than the piddly sad days of winter. This summer's been tough, but I'm muddling through, and I owe many, many days of survival to my above list of distractions. If it was just me and my head, I can't imagine how I would stay sane.

More...

Downs and Ups

After my last post, I did not climb out of the depressive hole, but in fact, sank deeper into it.

I keep coming here to try and write about what's happening in my life, but I've been struggling with anxiety and depression and the best thing I could do for myself was to look away from my train-wreck life for a bit and let my inner turmoil work itself out. And now, it has, and I feel obligated to examine this very full plate I have, before things spill over and I start making a general mess of myself. Again.

School: I should have taken the summer off. Lesson learned. This class is not difficult, but keeping up with the quicker pace has been tricky, especially with the added migraine trigger of the summer heat constantly making my head miserable.

I'm actually running out of classes I can take at my current school -- they don't offer online degrees, just a smattering of a selection -- but I think I can stretch it until spring, if I want. But regardless of when I go, I need to start really digging into the application and integration process at my future school, which is intimidating.

Home: Our house has been under construction since we moved in, and while the biggest projects are finally completed (functional septic tank, you are my bestest friend!) many projects are still incomplete, which gives our home an air of disrepair. Also, my landlord/grandparent has never been keen on fixing the place up, and is unreasonable about issues like: mold, dangerously leaning trees, and providing copies of bills that he wants us to pay. I want to move, but we're kind of trapped, since rentals are outrageously priced right now. My whole SSDI payment wouldn't cover the average studio. How do other disabled people afford to live?

Dogs: We're fostering/have adopted another dog (depending on who and when you ask), and while he is a sweet and funny addition to our little family, we've all had to adjust. Shockingly, feeding and caring for two dogs is double the work and money of one. This can be overwhelming, and if I'd had the choice, we wouldn't have taken the new dog. Unfortunately, he's here and he's adorable and wonderful, so it's too late now.

Love: My man and I are working on some issues, and this is an ongoing challenge in our lives, because neither one of us had intact parental models to emulate, so we really struggle to avoid the dysfunctional pitfalls of our childhoods. Basically, we both need therapy that we can't afford.

Family/friends: I joked this week that I should write a book called How to Lose Friends and Alienate People. Chapter one: Become Chronically Ill. People in the real world are starting to forget that I exist, and I am so terribly lonely sometimes, I feel like I can't breathe. Traveling has become harder for me, maybe because of the heat, and going to the city wipes me out for at least a few days, so I've stopped doing it for any social reasons. I'm a mess by the time I get to my destination, anyway. We live at most an hour from most of my friends and relatives, and even though I've issued invitations for them to come see me, I get very few visitors. The internet provides some connection, but it's not the same. I have a huge extended family that gets together at least every few months, but none of them reach out to me, and haven't since I got sick. The difference in social interaction between the first 27 years of my life and the last 7 has been a major shock to my system. When I was well, I felt I had this huge support system, that I had no shortage of people who cared for me and would be there if I fell, but I was obviously wrong, because I have fallen, in fact I'm still sprawled out all over the floor, and none of those people are anywhere around. The isolation hurts more than the migraines, sometimes.

My head: I am so fucking tired of being nauseated. I'm tired of the constant pressure, the stabbing that takes me by surprise and ruins half of my happy moments. I wish I could just have a day off. This last depressive stint led me to all kinds of suicidal ideation, mostly revolving around creative ways to take out the hot spots on my head. It's scary when my brain takes me to these places of desperation, all I can do is cling to whatever I can to make it to the next day, the next hour, the next moment. I made it, this time. I worry that someday I might not.

So, that's what's been going on in my head recently. There have been good things, too, like getting As, spending time with the friends who do remember me, playing with dogs, cooking interesting, healthy, tasty food, going on hikes that leave me sweaty and giddy, and discovering awesome books and tv to take my mind off of my troubles. Life is full of ups and downs, it's about making the ups as up as I can.


More...

I Recommend You Eat This

Hummus is the perfect summer food.

I've been stressed lately, but not in a bad way. My head's been reacting to it, like it does, but I've been getting a lot done, and that always makes the pain more bearable, for me.

This stress has brought many good things, like an A in my last class, a successful beginning in my current, and already planning fall quarter like a Boss. Also, we've happily integrated a new member into our wee pack, I've enjoyed a bit of a social life, and we've been able to keep the house consistently tidy. I'm so happy I've been able to live this much, but I still have too many days when I really feel like I've hit my limit, I'm never going to be able to get up again, and everything is just too. damn. hard. Yesterday was one of those days, and today I'm still shrugging it off, but I have just seriously cheered myself up by making hummus for lunch. So, please let me share my recipe with you, because it made me ever so happy and I hope fellow hummus-lovers, and hummus-lovers-to-be, will also find joy in my chickpea delight.

I never make hummus the same way twice, it's one of those foods that is really hard to mess up, so I just improv my way through it, and enjoy the results. You will need:

1 or more cans of chickpeas (or garbanzo beans, same thing), depending on how much hummus you want to make. You can also get them dried and prep them beforehand.

Roasted garlic. I just take a whole head or two and pop it in the oven for twenty minutes at 350. You'll only need a few cloves for the hummus, to taste, but roasted garlic will keep a while in the fridge and comes in handy in so many dishes.

Nut butter, a tablespoon or more. Traditionally, tahini (sesame seed butter) is called for, but I don't always have that on hand, and find peanut butter to be an adequate, though noticeable, substitute.

Salt, paprika, parsley, pepper, lemon juice, cayenne, basil, etc. to taste. Again, this is a hard dish to screw up, but it's a good rule of thumb to start with less and add if needed.

Extra virgin olive oil, a teaspoon to several tablespoons, depending on your preference. I prefer only a teaspoon or two of oil, and to supplement any other needed moisture with water, a tablespoon at a time.

Directions: Dump everything in a food processor and let it go until it's creamy, and nicely dippable. Slice some cucumbers, wash a few carrots, dip, eat, and feel your cares melt away. Okay, not really, but hummus is pretty good and you should try it.

More...

Book Reviews & Rants

I read paper books. Does that make me old-timey?

The Migraine Brain by Carolyn Bernstein, MD is an excellent resource. I binge-read it in one day and kept catching myself nodding in agreement with the life changes this book suggests. It's also obvious that this book is written by someone with first-hand experience with migraines, preventing and dealing with them, not just someone who treats them. Read it.

It's All in my Head by Paula Kamen is another good read about a woman with chronic headaches and her journey for treatment and enlightenment. I found it a good mix of sad and funny and hopeful and cynical. Read it.

The Food Revolution: How Your Diet Can Help Save Your Life and Our World by John Robbins is one of a long list of books of this type I've consumed. This one is a bit sensationalist at times, the juxtapositions of quotes from the meat and dairy industries alongside starkly contradicting quotes from government agencies and scientists are entertaining and sometimes difficult to stomach, but this book lays out the facts pretty well. We are what we eat, and if we aren't making our food responsibly, and consuming it responsibly, we'll suffer the consequences. READ IT.

Migraine by Oliver Sacks had a lot of good information, and I thought it was insightful, particularly in regards to more uncommon symptoms, until I got to the sections dedicated to chronic migraine sufferers. Let me save you the trouble. The gist was that many chronic migraineurs are emotionally unstable or in bad home environments and once they escape those situations -- TA DAH! -- they feel so much better. I've heard theories like this over and over, from doctors and civilians alike, and it never fails to get my hackles up. Check out this excerpt:

Clinical observation of migraine patterns indicates that a majority of patients with extremely frequent, severe, intractable migraines are caught in a situation of severe emotional stress or conflict (of which they may or may not be aware) and that this drives the migraine as a psychosomatic expression of their underlying emotional problems. (249)

"[O]f which they may or may not be aware". This is patronizing, and I'm so tired of being treated like I just need to have a long talk with a shrink, but it's good to know where the idea came from. I don't think Mr. Sacks invented the "migraineurs as repressed neurotics" trope, but I sure wish he didn't reinforce it. This is the book the doctors have all read! And while he has a lengthy bibliography, I'm not going to go hunting for the source of the above clinical observations, and instead I'll issue a challenge: citation needed. I need to know about these studies done on chronic migraineurs and their unresolved emotional problems of which they aren't even aware.

People in chronic pain may have less emotional control than those who are not, true. People who live in unhealthy home environments may have trouble getting proper medical care, also true. But correlation is not causation, and the inverse of what the author suggests is more probable: that many people, from all walks of life, experience emotional instability, or a difficult home life, but chronic migraineurs, like any person with a significant disability, can have an infinitely more difficult time extricating themselves from those situations. I'd bet that in these situations that the author describes, the migraines have more often led to, or at least contributed to, the life misery, not the other way around.

If I could omit these sections from the book, I might recommend it to a new migraineur as well as I would most of the other migraine tomes I've read. But, the ableism and privilege of the hysterical migraine theory made me want to throw it in the fire, so at the very least, skip those parts.



More...

Caching and Crashing

I went on a hike with a person who didn't understand my limitations and it didn't go great.

I should have never said yes, but for a complicated set of reasons, I did. It was gearing up to be another scorcher when I got her text, did I want to go check out a geocache within 1/2 mile of home? I decided yes, with the stipulation that it would have to be quick, because the day would be hot.

We headed out, never found the cache and the hike went much, much longer than I expected. I started to feel ill and requested that my hiking buddy call a ride. She joked with me that we would make it, and didn't. I asked again, a little later. She encouraged me to keep going and called me a trooper, and again, didn't make the call. To her credit, we were stopping every few minutes to rest, drinking lots of water, and moving at a slow to moderate pace, but when I said I needed a ride, she really should have made the call. The first time.

So, we got to some other cache that I was way too sick to care about and my vision started going wonky, so I sat down, refused to get back up and I asked her again to call my boyfriend. She walked away with her phone and I heard her asking him to come and get me, without telling him I was sick. I suspect that omission was out of some kind of guilt. He didn't ask for details either, since he already knows what this phone call means, and they hung up quickly, after determining our location.

While she was talking, I made mental notes of what was happening with my vision, being ever the migraine blogger. Looking down at my lap and the wooden bench under me, the textures seem to swirl together, pulsing and moving of their own accord. The field of grass and path further away seemed to ebb and flow like waves at the beach, and when I closed my eyes, I could see stars flowing into a center. Unfortunately, closing my eyes made my nausea flare high, so I couldn't enjoy that show too long.

Finally, my boyfriend found us, we made it home, and I actually recuperated faster than I expected, but not without experiencing severe nausea, dizziness, mild head pain, confusion, and those truly frightening visual effects.

I learned my lesson that day. I won't be going anywhere alone with that person again, she has proven herself untrustworthy and insensitive to my illness. Being chronically ill makes it so easy to weed out people, sometimes I'm really grateful to have this perspective. The migraines, no, but the deeper understanding of people and their capacity for sympathy and cruelty has been a fascinating lesson.



More...

From The Redwood Forest

Sunshine in the coastal redwoods smells like honey.

Some mornings, I'll head out for a walk and I'll be breathing in the normal forest smells, a combination of gently decomposing wood and earth, when suddenly, like finding a cold spot in a room, the smell of sweet, warm, vanilla-sugared syrupy honey hits my nose and I'm practically salivating. I wish I could take a bite out of the mountain, it's just so delicious. Instead, I walk slower and further than I intended. Taking my time, I soak in the scent, the warmth, the woods and the earth. Under the canopy, the breeze can have a chill, but basking in a sunny spot for a few minutes will warm my skin. The cicadas click, unseen in the trees. I can hear birds around me: the squawks of bright blue crested jays and the watery warble of tiny, brown juncos. Occasionally a conspiracy of ravens will pay a visit and fill the trees with their harsh, chattering screams. The squirrels chirp and bark at each other, dart from the ground to the high limbs lightning-fast, and the delicate snap of branches just out of sight betrays the presence of a deer. I've got my mace, if it's anything else.

Summer is pleasant on our side of the hill; we have some hot days, but we're partially sheltered by the trees surrounding the house, and since we're on the side of a mountain, the sun disappears completely behind our hill by 5 pm. The bees are harmlessly curious, lazily zooming around us like we're huge, confounding flowers. The air is still and thick and damp, and I have always hated humidity, but a hot, wet day in the forest is a totally different experience than the same in the asphalt landscapes I grew up in. Mornings stay cool until late, with the trees protecting us from the early sun, but once that summer heat hits, the hillside is baking, and even after the sun has dipped beyond our mountain, its heat seems to radiate from the very air, the trees, and the forest floor. The buzzing of crickets and the whine of mosquitoes are constant for a few more miserably hot days of the year, but mostly, we live in paradise, with the sweet, honey smell.




More...

Strange Migraines

I've been making note of some of the weirder symptoms I've been experiencing, and woah, am I getting odder.

Depression is the least weird, so I'll start there. It's a pretty common symptom of migraine, I've read, but it still surprises me every time. I'm just living my life, normal and chipper and fine, when -- WHAM -- I'm so sad I can't see straight. Grief, sorrow, despair, it's all the saddest words for sad, and maybe a little irritable in there, too, and I have no idea why, but it feels like forever. Then, within the hour -- WHAM -- my head is migraine soup and now I'm sad because I can't move and it all makes sense. I recognized it yesterday, though. I got super sad, just wanted all the hugs and to curl up and cry for how hard it is to go to the bathroom to pee and I suddenly realized, oh hey, I bet my head's going to start hurting real bad, real soon. And then, it did, and I felt like the smartest person EVAR. It only took me seven years!

When I was a kid, when I was very tired or very sick, I would unconsciously rock myself. Since migraines, I've started doing it again. When laying down, I'll catch myself rocking very gently and slightly, and when it happens while sitting up, it looks like I'm fidgeting in my seat, or moving my feet and legs rhythmically. Often, I don't realize I'm rocking until it makes me motion sick.

I think that the rhythmic movements are soothing to me, it feels like it's releasing some sort of energy or tension, or easing it. I couldn't tell you if it was neurological or psychological or what, Dr. Internets is vague: it could be tourette's, or adhd, or autism, or asperger's, or OCD (and then I'm like, I can't focus, I'm not big on prolonged eye-contact, and I like to count things. I have all the illnesses!). So, I'm not going to do anymore research until I talk to a doctor, because all that is just alarming and annoying.

I also rub my feet together when I'm migraining or tired, and I didn't realize how often I did this until I hurt my left foot a few weeks ago. Any pressure on the top is still really uncomfortable, so every time my feet go to do their weird little cuddle, the pain would alert me within seconds. There were a few times when I'd stop myself over and over within the span of a few minutes, and had to tuck one foot under me to get my feet to knock it off. This is another thing I seem to remember doing as a child, and I don't know why all these little-kid quirks are popping back up, but as long as the night terrors don't come back, I won't complain.

I've mentioned before that I developed a twitch early on in my migraining career. It comes on with little warning, and is so brief and rare that very few people have ever noticed it, but it still bothers me. It's usually my right shoulder that jumps, perhaps with a neck spasm to make my head tilt a bit.

In the past year or so, I've started having involuntary verbalizations, too. Again, when my head is flaring high, or I'm in a migraine hangover, what I am thinking will start coming out of my mouth, usually in half-formed sentences and mumbled words. This isn't the same as talking to myself, I do that all the time, it's more like the thought/speech barrier breaks down, totally involuntarily. For example, I was thinking of something embarrassing I did a long time, and as I recalled the memory, a low "Noooooooo" came out of my mouth, without my permission. Or another time, I was considering between two options, thought of a clearly deciding factor and blurted out, "I don't want it." Those words weren't in my head, literally, but the feeling was, and it's such a strange sensation to not have complete control over my speech like this. I've experienced loss of speech before, garbled language, and slurred words, but my mouth speaking on its own is pretty new and weird for me. It's not happening often enough to scare me, but these new symptoms are definitely odd and I look forward to sharing them with a doctor so I can witness their WTF face.


More...

The Mountain Witch

My friends have a new nickname for me. It's said with love.

So, I used to be a fairly normal woman in her twenties. I lived in the city, I went out with friends, I drank a few beers, went to family barbecues, and worked overtime when I could get it. Now, I am a strange woman in her thirties. I hide up in the mountains, and would outright refuse to come down if I could help it. I don't have many visitors, I spend a lot of time by myself on the computer, or with the dogs, roaming the forest as much as I can, which can mean I don't speak a full sentence or see another person for hours at a time. I once went two days. I love the solitude more than I thought it was possible to love solitude. The peace is literal and soul-easing, it's indescribable. So, this total change in life circumstances and living situation--besides my abundance of quirk--has earned me the title of The Mountain Witch, among some very clever friends of mine, and I think that may be the most accurate nickname I've ever been given.

In addition to the forest-recluse act I've got going on, I've also embraced feminism fiercely over the past few years, so the witch part is particularly gratifying. I don't wear makeup, I don't shave my legs as often as I'm supposed to, and I shop at thrift stores. I wave at my infrequently seen neighbors in sometimes strange, but always comfortable, clothes and most assuredly disheveled hair. The dogs follow me like familiars, sometimes even the neighbor's dogs. I step gently on the forest floor of dried fronds, crunchy leaves, and small sticks, barely making a sound. Maybe I am a witch. If so, I still have a few more powers to accumulate. I'd love to be able to walk into the forest and come out with a handful of herbs for tea. Flying would also be great.

In my class, which is wrapping up soon, we read Song of Solomon by Toni Morrison and I think I might be Pilate. At least, I hope I am.


More...

My Body, My Choices

People who share unsolicited and uninformed opinions about my medical treatment options and choices can suck it.

Years ago, I was grateful for suggestions. And, I got them. Eat this, drink that, avoid this, take this, rub this on, wear this, and/or go to this professional for some migraine miracle magic. Or, supplements and exercise, or rest, or "powering through it", or maybe prayer and positive thinking? Tsk, have I considered getting therapy? And always, always, always the pills. I've been on the crazy pills, seizure pills, sleepy pills, never-poop pills, fat pills, jittery pills, and pills of utter desperation. But, have I tried this pill or that pill or the other pill? If it didn't work, or was too torturous with side effects for me to continue it, I should probably just try it again, but at a different dosage, or in combination with this other pill!

And then I say no. No, I'm not actively seeking treatment, no I'm not taking those pills anymore. Or those. Or those. No, I can't afford that treatment, no I don't see the value in wasting my every cent on my head when most of the money I've thrown at it so far hasn't done me a lick of good.

Some things we just have to accept.

Butbutbut! I'm giving up! Living off the government! Mooching! Not trying to get better! Hiding from the world! Being lazy! Taking advantage of the system!

No, I say, this is acceptance. If I discover a treatment that seems promising to me, I'll try it. If I can somehow afford certain treatments, through a miraculous monetary windfall or an equally miraculous change in coverage by medicare, I will eagerly pursue them. Until then, I accept and make due and live my life with very, very quiet enthusiasm and try my darnedest to ignore the criticisms, because those people do not live with my illness, my body, or my life.



More...