Speaking Up

This is where I come to vent about my migraines. If I didn't spout it all off here, I might never stop talking about it in real life. I like to talk things out as a coping mechanism, which is great for most interpersonal conflicts and temporary problems, but for a chronic, long-term illness, complaining to everyone all the time is just not the way to go.

So, I suffer in silence a lot, because I prefer to. Friends and family may ask, but I usually give them a short or noncommittal answers. Nothing's really changed and unless a person has a legitimate question or concern, I don't want to chit-chat about it.

But, there are times when I've had to speak up, and when that happens, I tend to be blunt. Who has the energy for subtlety? For example:

There's a person who constantly asks me what medications I'm taking, who can't seem to talk to me about anything BUT migraines every time I see her. So, every time I see her, I tell her that I don't want to talk about my head, it's exhausting and stressful and I'm trying to enjoy my time out of the house. Her reaction is usually not good (though we've been doing this for years now, you'd think she'd learn?), and I have to repeat myself several times per occasion.

There's another person who makes jokes at my expense, because I'm just so weird now that I'm sensitive to every stimulus ever. Last time he did it, I pointed out that he was being cruel (would he say the same things to a person who'd lost a leg or who'd gone blind?), and he got his feelings hurt and hasn't talked to me for months. That one's a win-win, really.

My school counselors, who are STILL giving me the runaround over captioning video and audio content, they've gotten my Professional Tone unleashed upon their emails. I worked in customer service for years before I got sick, and I can still pull out some frighteningly articulate smack-down language when I try real hard. I don't know that it'll get me anywhere (these people, what do they do all day if they aren't actually helping disabled students?), but at least I've spoken my mind and it's on file somewhere that I'm tired of their crap.

Then, there's my neighbor, who shows up at my house unannounced looking for my boyfriend, then starts chatting my ear off instead. I give him the old, "I'm not feeling well, you'll have to talk to [boyfriend], sorry." Then, I walk away and close the front door. Last time I left him in our front yard, he continued to talk to himself for a minute, not realizing I'd gone (even though I spoke perfectly clearly and closed the door not-quietly), but that was weeks ago and he hasn't done it since, so maybe he finally gets it.

Having chronic migraines has helped me get over my lifetime need to be liked and I've finally learned to stick up for myself without feeling guilty for it. Speaking up isn't easy, and I still get stomach butterflies of anxiety every single time I have to confront pretty much anyone over anything, but I do it anyway, because while it may not feel great to say negative things to another person, it's infinitely more uncomfortable to swallow my frustrations day after day.

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School and Entitlement

I've been registered with my school and working with a disability-centric counselor for over a year now. Unfortunately, this is my third enrolled quarter and I'm still fighting for access to reasonable accommodations.

Every quarter, several times, I've asked my counselor about providing me with captions for online video. She's had me email teachers to ask about class content, and then nothing would happen. Without those captions, I've seriously struggled through video assignments, and it's been mostly luck that it hasn't affected my grades yet.

Things reached a head last week, my counselor was on vacation, but was still responding to her emails, and was answering my very specific and time sensitive questions in a lackadaisical, canned manner. She was trying to help me without access to her file on me, I'm assuming, because I had to remind her of everything ever about my classes, disability and accommodations.

THEN, my email went wonky and she couldn't see any of my text in my messages. (I found out later that my email client was switching my font color to white on only some emails, so the message was there, it just couldn't be seen unless you looked hard for it.) I tried a few more times to message her, with no success, then gave up in frustration. We weren't getting anywhere anyway, and she wouldn't be back in the office for weeks, when I needed help NOW.

So, I decided I was finally done screwing around and got in touch with the head disabilities guy, my counselor's boss.

He wasn't initially as cooperative as I'd hoped he'd be. He didn't seem to understand that people with sensory issues can benefit from captions, and we went back and forth a few times on the topic. But, in my last email to him, I got down to business. I laid out exactly why I needed captions, I explained the difficulty I'd had with my counselor in the past, and I also asked him if I understood their job correctly.

"I was under the impression that the disability counselors are also supposed to be advocates in part, and should be proactive in finding accommodations that are available to and would help their students. After a year of struggling with issues that should have been resolved in my first quarter, I'm finding myself wondering what else is falling through the cracks. What other accommodations could I use that haven't been brought up?"

It pained me to write that last sentence, and let me tell you why.

Entitlement.

I can't help but flinch when I question what else I can get out of the system. Am I a parasite on society? Am I milking the teat of the government, like Mitt Romney says I am? I'm trying to have a better life! I'm trying to make myself productive again, and I'm sure as hell using the tools that the government and private charities have set up to help people like me breathe a little easier.

But thinking like that is considered scamming the system, it's being shiftless. I'm now part of a group of people who "believe that they are victims, who believe the government has a responsibility to care for them, who believe that they are entitled to health care, to food, to housing, to you-name-it."

And by the way, yes, I do think I'm entitled to food. I think we all are. When we don't have food, we die. Does Mitt Romney think I should die of starvation because I'm disabled? Am I overreacting, here? It feels like overreacting, but I quoted him up there, that's exactly what he said, he thinks it's wrong that people who need to be cared for can get food benefits, and later he states that these people, who need benefits, aren't taking responsibility for their lives.

Oh, did I swear up a storm when I heard him say that.

What kind of a person thinks it's fine for people to die of starvation when there is plenty of food to go around? Or thinks poor and working-class people just aren't responsible? The kind of person who thinks government-funded public services that save people's lives EVERY DAY are wasted money. He is absolutely not the kind of person who's fit to run a country.

Obama 2012.

But, back to the accommodations. After I sent my rather scathing email, which was still pretty damn diplomatic considering the bull I've been putting up with for the past year, I got the most productive response I've ever gotten out of their office, the highlight of which is that they are allegedly working to get me transcripts for all audio content.

Success will be sweet.



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Marvelous Machines and School Struggles

I got a dishwasher! I've been stalking craiglist ads in my area for months now, hoping that someone would post a (1)working portable dishwasher (2)for a reasonable price (3)when I actually had money to be able to spend on it. Last week, that ad was posted.

It's a half-sized, portable dishwasher and it works brilliantly. I've only used it three times so far, since I've actually become quite the hand-washing dish-ninja, but when I have utilized it, it's been sorely needed. As a consequence, I haven't had a kitchen-cleanliness-related mental breakdown since we brought it home! Less stress leads to less migraines, which leads to an easier existence! And I am all about making my existence easier.

In other fantastic news, I've been gifted a sewing machine! It's an ancient Morse, model still unknown, and I don't have a manual for it, but I managed to thread it and get it to work long enough to find out that the motor needs replacing (well, all I saw were sparks and smoke, it took a few good men to determine that it isn't something reparable), but a motor is fairly cheap, at least compared to a sturdy old beauty like this girl here.

SO PRETTY. Also, she weighs a freaking TON.


In more stressful news, I'm getting the runaround from my school counselors regarding what accommodations I qualify for. I say captions are really important for a chronic migraineur's comprehension of video, they say captions are only for people who are Deaf or hard of hearing. I'm currently crafting an email to the head disability dude at my school and I'm hoping that my thorough explanation of what videos are like for me and what it means to have captions (or transcripts) available in a learning environment will sway him to help me out. This is why people sue! If no one will listen, what other option is there?


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Going Natural

Between being a newb feminist, discovering my inner greenie, and being physically unable to bend and reach repeatedly, my personal grooming habits have totally changed. It's not something I bring up a lot, but today I saw an advertisement for eyelash extensions, and I suddenly feel the urge to preach my efficient, yet minimalist version of self-care.

My hair was one of the first changes I made when I got sick. My shampoo and conditioner were perfumed, as are 99% of the self-cleaning products on the shelves, and when scents started bothering me, taking a shower became a torment. I googled around for unscented shampoo options and came across the no-poo method. It's been years now since I've used anything on my hair other than baking soda, white vinegar, lemon juice, olive oil, rosemary tea and cornstarch, and it's normally just the soda and vinegar. This method has also reduced the frequency with which I need to wash my hair, which is great because the reaching while shampooing and being cold while my super-thick hair takes HOURS to dry are both potential head triggers and I'd rather not do them four times a week.

I've also turned to natural, unscented soaps. I've been switching off lately between a basic olive oil soap and a goat's milk soap, which does have a slightly... goaty scent. On my face, I use the oil-cleansing method, and I really love what it's done for my skin. I break out a lot less than I did when I used the non-comedogenic, medicated, supposedly gentle for sensitive skin, commercial cleansers. Now, I just rub my face, neck, shoulders and chest down with an olive oil/castor oil blend, sometimes I steam with a hot washcloth, then wipe it all off, gently, and my face is soft like a baby's butt.

My facial skin is also probably improved because I hardly ever wear makeup anymore, and can't actually remember the last time I wore anything more than chapstick. I have no good makeup recommendations, because all I have is stinky stuff that I hate, I can't afford replacements, and I think makeup is a bullshit institution anyway. Why can't I have visible blemishes? I'm a person, not a mannequin. I might be on a makeup strike.

Speaking of strikes, let's talk body hair. Until the last few years, I was the master of the razor. I wore short-shorts and bikinis and rarely was stubble ever seen. But with migraines, I've been unable to shave my legs without triggering head pain, from all the bending and the reaching. During the winter, this isn't an issue at all; I'm not wearing anything skimpy when it's less than 80 degrees anyway, so I leave it alone.

In the summer, I'll use a razor on my legs once or twice, but mostly, I rely on a trusty electric trimmer to mow the leg-lawn. It leaves stubble, so it really only changes things from fluffy to prickly, but it's better than feeling like a total sasquatch when I have to be in public on a hot day. Depilatories and waxes aren't an option for me, I hate them for their smell, skin irritation and ingrown hairs.

I do pluck my eyebrows a bit and wax my upper lip every now and again, though. I prefer not to have a moustache, or a unibrow. I'm only exaggerating a little.

I do eventually hope to come to terms with my body hair, embrace my sasquatchiness, and to be able to simply leave it alone, without feeling self-conscious. I consider the requirement of females to be hairless to be sexist and unfair, and I'm trying to reclaim a love for my body, as it is. Body hair isn't gross, it's certainly not unnatural, and it's no one else's business but mine. And, now yours, I guess. Hi!

My one purely self-indulgent, totally toxic grooming behavior is painting my toenails. After migraines hit, I didn't for a long time, but just this summer I've started it back up. The fumes are really noxious, and I have to be outside to withstand them, but it's worth the effort, when I can handle it. I've been rocking some white metallic paint on my toes for the past few weeks, but the next time I'm feeling up to it, I'm thinking of going cobalt.

Besides all the superficial stuff, a big part of taking care of my physical appearance is protecting it, and sunscreen is the one thing I haven't been able to change about my routine, yet. If I will be in the sun for more than a half an hour, I always wear it, though I really dislike the feeling, the smell and that every brand I've ever tried has made my skin break out. But, if I can't stay in the shade, I have to suck it up. Sunburns are the worst.

Being chronically ill can really take the wind out of your sails when you are trying to appear socially acceptable. And I have a secret for when I feel too tired or I'm in too much pain to keep up the charade: I don't. Those normal social rules that dictate what we should look like and how we take care of ourselves? They're crap. If I feel terrible, I will walk the dog in my pajamas, or go to the pharmacy without brushing my teeth or hair. I will even go out without washing my face, if I don't have the energy. If get funny looks from strangers (and I do), I just keep moving and get my stuff done so I can get back home and lay the hell down.

So, my priorities have shifted over the last few years. Appearances still have some import, but my health takes precedence. And it's sad that it took getting sick for me to realize what really matters.



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Ginger and Whining

Whyyyyy is the nausea kicking back up again??

Not that it's really ever died down that much, for nearly a year now, it's been ever-present whenever I'm in a moving vehicle. Years ago, before migraine was a word I used, I used to brag, "I can read and eat sitting backwards in the back of a bus and I'll be fine!" Ugh, just writing that sentence made my stomach roll and my vision went a little wonky. The letters on the screen started doing a sort of 3D wiggly-dance, anyone else ever get that?

This post is brought to you by Canada Dry! They didn't actually send me anything or pay me, but for a reasonable price, they're keeping me from feeling like I'm going to hurl on everything at all times. Thanks Canada Dry!

As far as ginger ales go, Canada Dry is a good-tasting brand and is consistent in quality and flavor. Also, my boyfriend has become an extreme couponer in order to keep up with my habit, and Canada Dry is the only brand sold locally that we can afford. The last time we shopped he got me a eight cases for $2 or something silly like that. I've tried a few other brands, Seagram's was the most recent attempt, since they also offer coupons, but they aren't gingery enough for me. I've also tried some fancier ginger ales from Beverages and More (my brother's a bit of a soda connoisseur), and they were, on average, AMAZING, but way out of my price range. So much so that I never even bothered to look at the labels, just savored the moment while I had it.

Other than for medicinal purpose, I avoid sodas completely. It's ginger ale for the nausea and dizziness (a sip or gulp every minute to half-hour as needed), but I'll also rarely turn to Coke or Pepsi if a migraine feels like it might respond to caffeine (no more than 1/4 can at a time, and no more than 2 cans a day), but only if coffee (a sip at a time, spaced minutes apart) or tea (a few sips at a time, spaced minutes apart) aren't available. I don't drink soda recreationally, though, because I think that corn syrup, and it's high-fructose brother, are terrible for my health and for our country's agricultural sustainability. That's why I prefer my medicinal caffeine via coffee and tea, and if I could afford and find ginger ale without it, I'd be an instant convert.

I've considered making ginger ale myself, but haven't yet had the money to invest in bottles to give it a whirl. I do drink ginger tea, sometimes, but the carbonation in combination with the ginger is what really kicks the nausea for me, I have to drink twice as much tea as soda to get the same effect. Ginger candy is gorgeous, and I do like to keep some on hand, but I have to eat it continuously for it to be effective, so I treat it as more of a candy than a medicine.

So, I'm a ginger ale junkie, as long as the nausea sticks around. It's the only thing that's consistently made me feel better, reliably and without side effects. I do catch myself without ginger sometimes and those occasions are very uncomfortable. My backup remedies are only somewhat effective, if at all, and include eating or drinking constantly, sucking on lozenges constantly, and/or whining and moaning constantly, none of which make me a fun person to be around. Hence, the boyfriend has become an extreme couponer of ginger ale. Thanks again, Canada Dry!




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Incoming

Despite being disabled and not having any prospects of employment outside the home, I try my hardest to be productive, and even make a little money, where I can.

For the past few years, I've been filling out surveys online, I wrote up a review about the companies I was using back in 2010, but times they've a-changed.

Lately, the survey sites I frequent are Global Test Market, Pinecone, My View, My Survey, i-say, and a few others that so infrequently pay me anything that they aren't worth mentioning. Even the ones that do pay out regularly seem to take forever to build up any cash lately, because I'm a terrible consumer, with my DIY and cooking from scratch and buying everything used. It's my own fault, and I'm ashamed.

Haha, no! Not really! But, I do miss that income, so I decided to try out two new website-income type sites, Swag Bucks and Amazon Mechanical Turk.

Swag Bucks paid me $35 in Amazon bucks for the month I used it. I installed their toolbar, used their search engine, completed tasks, signed up for stuff and took surveys, but I also quadrupled my spam influx and often spent an hour a day on the site to get that income. It wasn't a good fit for me, in the end, so I cashed out as soon as I could and closed down my account.

Amazon Mechanical Turk, however, is my new favorite thing. It's basically a database of surveys and clerical tasks that can be completed relatively quickly for various dollar amounts. In my first month, I made over a hundred dollars and expect to make about fifty a month in the future. I'm sticking with this one, and look forward to a little extra christmas money.

Update: I only used the Amazon Mechanical Turk account regularly for a few months, then abandoned it because it was too much screening effort on my part. There is money to be made there, but my migrainy brain can't handle such a large amount of varied information without blowing up, so it wasn't profitable at all in the long term.





Does anyone else make money online? Save for gigs that require a webcam or talking on the phone, I'm always looking for new possibilities!




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