Progress is Perfect Enough

So, I made it through xmas without too much pain or stress, and it's mostly due to avoiding everything.

I have this tradition with my grandfather that we go shopping together for xmas, I help him pick out gifts for my parents, brother, and boyfriend, and of course he prompts me repeatedly to pick out things along the way that I would like. He's a sweet man, kind and patient. He's always been supportive and empathetic and is one of my few family members that hasn't completely disappeared from my life since I got sick. I make a point of being well enough to go out with him, even if I'm really not, because he's one of my favorite people in the world. I skipped several events this holiday season, but his and my annual shopping trip was not one of them. And it was great, as expected.

And then I saw him again at my parents' house xmas day and he told me his new years' resolution was to get up to see me more often! I need more people in my life like him, this can only be good for me.

Xmas eve was at home, and it was very quiet. My boyfriend had a spine procedure during the day, so we took it easy, watched Trading Places and opened stockings, which were stuffed with little things we'd gotten each other and ourselves at the dollar store.

Xmas day was at my parents' and we spent hours talking about nothing and hanging out. Everyone was in a good mood, I brought my own snacks (these amazing veggie chips I found at 7-11) and there were nuts I could eat, so it was pretty much a perfect day.

I'm having quite the migraine hangover today though; so much nausea, confusion, and overall malaise, I can hardly move. I've been soothing my addled brain with Gilmore Girls, and they aren't a bad remedy for what ails me. At least, they are a light-hearted distraction.

I expect the new year to be quiet as well, and to pass as any other day. I feel like I spent much of this year being frustrated and anxious, and I'll be glad to see the end of it. Not that it was a total loss, I set some boundaries in my life and have been successfully reinforcing them, I've continued to exercise every day I can, I've maintained my mostly vegan diet, and I've even been writing a little. But, I've been very bothered by not being in school lately, and the feeling of aimlessness is not a comfortable one.

I hope 2015 is more focused, more productive, and I'd like more control, more freedom, and I could probably stand some clarity. Couldn't we all.


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Self-Indulgence, A Panacea

This has been a trying time for me.

I started this blog to deal with the 16,000 stages of grief that I was going through with the chronic migraines. I detailed my symptoms and treatments, worked out my every thought and emotion about being chronically ill and relatively young, and just as I was starting to feel like I had a real solid grip on living this altered life, the IC got all serious on me, and now I feel like I should start an IC blog, detailing my every thought and emotion, symptom and fear, and how goddamn irritating this diet is and how terrible I am at following it.

I mean, I'm pretty good at it, but if you ever eat anything from a box, jar or can, there's a 99% chance that it violates the IC diet somehow. When my head hurts or I'm depressed, I forget to read labels, and it's practically guaranteed that after I've eaten enough to hurt, I'll remember and find soy lecithin or citric acid or cinnamon. I'm so tired of being in pain.

It doesn't help that I've been waking up with migraines every other morning for the past week, and this morning seems to be a juicy one. I feel a little depressed, but not too bad, because I have two things to hold onto right now, and I'm holding them tight.

1. I decorated for xmas. For the first time in years, I put on some holiday music and slowly set up our wee, two-foot tall tree, decorated it with the tiny ornaments I could hardly remember having, and hung the stockings by the chimney with care. It's a little thing, it only took me an hour or so, but it's the first time that I've decorated my home for christmas, and enjoyed it. I even found a few bells in the ornament bag (a sandwich ziplock lol) and hung one on each of our stockings, so we'll hear if St. Nick puts anything in them.

2. I'm writing a story. I haven't written anything like this ever, so it's exciting and scary and all those emotions we get when we do something we're not sure we can do.

They're little things, but I'm doing them both just for me, and that makes them both feel very indulgent, which I think is good for the soul.

As the wise Donna Meagle says, "Treat. Yo. Self."

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A Complicated Holiday

It won't be the typical Thanksgiving this year, and that's probably a good thing.

I read that there are going to be protests and fasts today; people are mad about working for sub-living wages, they're mad that a police officer shot an unarmed teenager and is suffering no consequences, and of course, they're mad because this holiday is a hypocritical mess of pretending white people were friends with the natives of our country and didn't actually commit genocide.

And it's not the same at my house this year, either. We don't have money for groceries right now, so I'm making what I can with what we have. Lentil loaf for me, chicken for him, instant potatoes, mushroom gravy and whatever veg I throw in there last minute.

Despite the hypocrisy of the holiday and the frustrations I may have in my own life, I do like to try and be thankful, it's a good plan to appreciate what we have.

So, I'm grateful for the lucky combinations of food in my pantry and fridge that is allowing me to make something resembling a thanksgiving meal. I'm thankful for the roof over my head, the people who care about me, my dogs, and the internet. I'm thankful for justice, when it happens, and for those who stand up when it doesn't. I'm grateful for the trees and the quiet, the clean air and peace that living in the country provides me. I'm lucky in a lot of ways, and it does me good to remember it.


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The First Steps are the Steepest

So, I finally told my doctor that I am sometimes horribly depressed and it often coincides with menstruation or ovulation, and also my periods are brutal and heavy and painful and she prescribed me a progestin pill. I was hesitant until she said it might stop my period, I am ALL ABOUT THAT.

My periods have gotten worse and worse over the years, and it's been really affecting my life for the past six months, probably longer really, but my head affects my life, and my IC affects my life, and the depression affects my life; the period problems kind of blended in with all that for a long time.

I started it on day four of my period, and the bleeding did not miraculously stop, but my cramps sure did, almost immediately. Maybe they were already on their way out, but I doubt it, and I got all excited. My head did hurt a little more with exertion, but it was nothing I couldn't handle at first.

Unfortunately, my IC symptoms went out of control after a day or two on the progestin. I didn't connect the two right away, not for another few days, but my diet has been perfect as far as I know, and I'm pretty sure I don't have a UTI, so as soon as I realized the only other change in my routine, I stopped the pills and now, 48 hours after my first missed dose, I'm finally starting to feel definite improvement.

The migraines are hard to deal with, but I've had time to adjust to the sacrifices. They've taken away relationships, my ability to work, and so much of my freedom, and I thought I was coping with it rather well for a while there, but the interstitial cystitis has really showed me another side of myself. I didn't know the depression could get this bad, and I could live through it. I didn't know I could handle this much pain, and still walk around like a semi-normal person.

The migraines often come with so many other symptoms - slurring of words, dizziness, irritability, and confusion, for example - that I am not always totally with it when the worst of the pain is hitting. But the IC has no cognitive impact, I feel it completely and my faculties are cruelly intact. This is torture. This is shake your fist at the heavens and curse deities for having forsaken you pain. Sometimes I wish I wasn't an atheist.

But, it's getting better! At least I'm not crying at every pee anymore. The pain is still substantial, but going from a 10+ on the pain scale to an 8 means the world. It means sanity.

And even though the stair gave out under me, I think I just took my first step towards something better.


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Everybody Poops (On Themselves)

Did I tell you guys about how I shit myself recently? It was surreal.

I love telling stories about stuff like this, poop and periods and disgusting things children do, because while people are sometimes shocked that I talk about this stuff so easily, once I finish a story, someone else has one to top me. We all experience the disgusting parts of being human, we should talk about it, and laugh about it more.

I used to get these bouts of diarrhea that I was fairly certain were dairy-related. I hadn't had one since I went vegan, but I ate some cheese in the midst of my being so sick I didn't have the energy to feed myself properly, and therefore woke the next morning at three am with a gurgling belly and an undeniable urge. I took some pooper pills, it stopped after a while and I felt relatively better, relatively quickly. At the same time, the never-ending IC flare had actually turned into a urinary tract infection, so I was taking some pain pills that make my pee bright orange but dull the bladder spasms beautifully.

SO. I've gone through this pooping rigmarole before, and at first it was the usual response. Normally, once I take the poop pills, my digestive system stops totally for about 12 hours, after which operations started resuming slowly, but I don't expect to really poop again for two days, and then it will be pretty much business as usual.

I made it to the second stage, operations were getting fired back up, and I was feeling my first urge to pass gas, so I casually leaned a bit in my seat to let it out gently and WOOSH. Leftover poopwater shot out my butt, soaked my pants and was starting to soak my chair.

OHMYSHIT. So, I jumped up to get a rag to save my chair, and when I looked down at the seat I was horrified to see the stain was BRIGHT ORANGE.

OHMYSHIT. I hurried to soak the rag in water and save the chair, which I did, and had to change my lower clothing entirely (socks too! lolgag), and had to stain treat and wash everything immediately and the whole time I'm alternately baffled at how I became a grown adult who deals with watery shit without crying, and giggling at how the one time I've shit myself since toddlerhood it has to be bright orange.

My favorite comfy pants still bear a faint stain on the inside, and it cracks me up every time.


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Filling the Jug

I'm feeling better, for the moment, and I am taking care of a few medical things from the never-ending list of medical things I have to do.

The most interesting of these is a urine histamine test, because it requires me peeing into a jug for 24 hours. It's a large jug, but I'm trying to ignore the fear that I'll fill it up by noon. What do I do then? Start filling jars? What if I run out of room in the fridge? Will the neighbors mind if I ask to store some of my pee until tomorrow? I was half-convinced my fears were irrational until I started filling the jug and it's already a quarter way up at 10:15.

I'll be fine, I have jars.

I'm also getting a lipid panel, so I have to fast for 9-12 hours beforehand. I get emotional when I'm hungry, and needles are not my favorite, so it could be a scene.

The mornings have finally turned cold in the redwoods, and I sense that my walks will start getting longer and longer. I was frustrated with my progress over the summer, I exercised more than I thought I'd be able to, but I didn't increase my time, my stamina, or my strength, and I couldn't help but feel discouraged by that, even though it was for perfectly good reasons, like I was coughing up my spleen for a month, and before that I could barely walk from the IC pain, and before that it was all explosive heat migraines, all the time. I was finally able to get back out on the mountain last week, and my struggle was real. Breathing hard, stressing my head, and taking rests felt like a step backwards, but three days in and I'm already starting to bounce back. I took our hill like a champ this morning, despite having interrupted sleep and a waning IC flare. Yay!


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The Sick Has Taken Over

I have been feeling like sheeeeeeeee-it.

The depression and anxiety are totally out of control, until they aren't and I'm nearly fine. It's very much hormonal, and very fucking frustrating.

I usually try to avoid swearing here, but since I haven't been around much, I'm not going to stifle one iota of this writing momentum I'm trying to build up, so if I drop a few fucks, shits, and assholes, well, I guess you're finally getting to know the real me.

I got the enterovirus, or something similarly coughtastic, and it's been mothercracking WEEKS of this shit now and I'm so tired. Actually this is the first day I've felt somewhat normal, singing and dancing while I clear out the MOUNTAIN of dishes in the sink. Now there's just a rolling hill, and I'll tackle that once the precariously piled clean dishes dry in the rack.

My head doesn't appreciate the coughing AT ALL, so that's been miserable too, except I can't medicate because smoking triggers what? COUGHING. SONOFAMONKEY.

Edibles are an option when we have the stuff to make it ourselves, but we haven't for the past few weeks and resorted to store-bought and guess what? It's all either too heavy to gag down while 'graining or inflammatory to my IC, so NO.

The IC has been a dick, too, but that's mostly my fault because in the midst of all the sick I wanted Chinese food so bad I didn't care about the repercussions and ate the hell out of some delicious chow fun and mediocre potstickers. I felt the pain for a week! The hell, urethra, I have no idea what I did to anger the renal gods but they hate me.

I got some bloodwork done, and got the results back but no comment from my doctor yet, so I'm going to share my abnormal results with you and we can all speculate.


Test - my number (what is normal)
Vitamin D - 22 (30-100)
White Blood Cell Count - 3.6 (4.0-11.0 K/uL)
Hemoglobin - 11.8 (12.0-15.5 g/dL)
MCH - 25.8 (27.0-33.0 pg)
Neutrophil - %39 (49.0-74.0%)
Monocyte - %13 (2.0-12.0%)
Abs. Neutrophil - 1.4 (2.0-8.0 K/uL)

So, the internet says these low blood cell counts could just be anemia, which I've had off and on for years, and I suspect being in the midst of the sick has also thrown off some numbers, but then it also suggests cancer, which is so damn rude, but that's what I get for googling instead of emailing my doctor.

So, I started taking vitamins again because I'm still too tired to properly cook for myself every meal, and that might be improving my energy, but it could also be that I'm only having five coughing fits a day instead of 16,000.

I haven't hiked with the puppies in ages, and I really miss working out, so hopefully I'll be able to reclaim that in the next week, but as soon as I feel well enough it'll be time to get my flu shot which knocks me down for several days too. Weeeeee!


At least I'm pooping regularly.







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Driving, Walking, Waiting, Whine

I really need to complain about not being able to drive.

I can physically drive a car, I have a license. I just can't drive anywhere alone because there is a 95% chance I won't be able to drive myself home, or even make it all the way to my destination in the first place.

That means I rely on my boyfriend to take me almost everywhere. When we lived in the city, I could walk short distances, but we're out in the middle of nowhere now, there are no stores or libraries or anything within walking distance, for me.

Other people walk and bike the highway that runs near our house, it's only about six miles to town, and even less to two glorified turnouts that house a little convenience store and a burger joint, but there is no way I could make it. It's a two-lane, winding, mountain highway, there are plenty of blind turns and narrow bridges, the speed limit ranges from 25 to 45 mph, and there is no sidewalk or bike lane. I can't even stand next to the highway for more than a minute or two; the noise, smell and pressure of the passing cars thumps my head into a delirium.

I haven't seen my friends or family in ages, in part because we moved an hour away and most people don't want to make the drive. They also used to be semi-reliable sources of transportation when I had to get somewhere in a pinch, but my resources here are much thinner.

And making new friends is harder when I can't drive. I hate asking someone to pick me up all the time, and since I can't really go out to most places, or even watch movies or listen to music with other people, I'm basically trying to get people to come over and drink tea with me. I know you are out there, fellow tea drinkers! Come over! And please don't mind the mess.

I can't get my own groceries, because I have to have someone drive me, and be willing to handle the actual transaction for me, if I'm unable.

I can't... just go. I used to love to just drive, take off for hours and go to the beach, or take care of all my errands in an afternoon, or just be by myself, in the world, in control of my destination and arrival time. I miss that independence so much. It's been seven years, and it still hurts like it's new. My only solace is being able to go into the woods alone, but there's no real destination there, no purpose, so it's not quite the same, though it is a similar feeling.

I am waiting right now for my boyfriend to get home. We need to get groceries, and it's already been put off several days. He's got legit stuff going on, so I'm trying not to be rude about it, because I do have food to eat and I'm in no danger of dying of malnutrition, but UGH if I could just drive myself, it would be great.


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What is Good

I'm still quite a bit in survival mode right now.

The IC is calming down finally, but now my period has started for another whiz-bang of a pelvic party. Ibuprofen helps with the cramps, but I am chained to the house for the first several days of my periods just for their heaviness, and besides that my head is so, so sensitive, and now I'm finding myself feeling sad and really lonely, so I've decided that I need to focus on what is good.

~*~**~*~A List of What is Good~*~**~*~

Daiya Cheddar (I'm still on the IC diet, and still praising the vegan overlords for the soy-free, dairy-free genius that is this stuff)

Avocado

The hit 90's tv series Charmed, starring Shannen Doherty, Holly Marie Combs, and Alyssa Milano

Pot, which is saving my head, and the bubbler that is saving my lungs

Being able to exercise

Tumblr (I'm starting to lose time, so it may be time to back away)

My boyfriend. Having support is invaluable.

The internet, at large. It is my lifeline, and my major time sucker. Pros and cons.

Tortillas. Everything is better wrapped in a tortilla.

Books. The thing about rereading old favorites is that the book stays the same but sometimes we've changed. The same happens with all kinds of things, but books are so personal to me, it's always surprising to reread something I've read a thousand times and have totally new thoughts about it.

Sleep. Just can't get enough.

A night warm enough to have the windows open and the sound of crickets lulling me to sleep.

Dogs, because they help me live in the moment, and find joy in just being alive.


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Truth-Seeing Leads to Truth-Saying

A squirrel leaped into my line of sight just now, clinging and half-hidden on the shadowed side of a redwood tree. It twitched its little head around in that way that most prey animals do, but as it moved, its skull seemed to change shape entirely and it became a grotesque confusion for a moment as my brain sorted out that it was not actually a squirrel but a jaybird.

This was a random occurrence, a trick of the light more than anything, but it made me think of how many times in my life that my perception has changed like that, suddenly and unexpectedly. I'll be humming along, thinking a thing is a thing, then suddenly I make a connection or see the thing from a different angle and the world shifts, everything is akimbo, and I've realized an entirely new set of parameters by which to judge whether things really are things. Atheism, existentialism, vegetarianism, socialism, feminism; these are ideas that clicked with me in a flash of understanding and before my respective epiphanies, I was a half-hearted christian, absolutist, capitalist shill for the patriarchy, without ever really thinking much about those beliefs at all. Instead I blindly accepted the opinions of the people around me as truth and found ways to justify and defend those beliefs, even if they didn't always ring quite true to me.

And that was the problem, turning a blind eye to the things that sat wrong with me, ignoring them or excusing them, more interested in staying comfortable and keeping the peace than challenging the problems I might see. Until one day, one moment changes everything and I can't go back.

I see sexism, racism, ableism, classism, etc everywhere, in the everyday speech of everyday people, in advertising and media and our clothes and even our food. Rich people get richer, poor people get poorer, but it's always the poor who are abusing the system, somehow. Unarmed black citizens are being shot by our own police while white men with guns demand their right to carry them into grocery stores. Anti-rape nail polish is a thing. Most of the meat available on supermarket shelves is from factory farms, essentially large-scale animal torture operations, and yet it's the vegans who are accused of being extreme.

I sometimes wish I could unsee it all, but that's not practical, or fair. Besides, no matter how hard I look at (or away from) that jaybird, and no matter how it may still vaguely resemble a squirrel if I squint at it out the corner of a half-shut eye, ignoring the reality won't ever change it.

And I do want to change it. I want to change it all.



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Food and Measuring Moments

So this has been my worst Interstitial Cystitis flare since I started actively managing it, and as a result, my diet is ridiculous.

I went mostly vegan almost a year ago, which cut out 99% of dairy, eggs and seafood from my diet. It's been going great and I haven't looked back, but now I'm faced with some severe dietary restrictions to heal my urinary tract and eating has become complicated in a whole new way.

The IC diet actually encourages dairy, which is annoying, but eliminates all acidic foods (tomatoes, citrus, pineapple, vinegar), most spices (cinnamon, paprika, cumin), soy (tofu, soy sauce, almost all the veggie burger type products), onions, pickles, chilis, and basically 80% of the ingredients I use in every dish I make.

So, I've been eating a lot of potatoes, brown rice, beans, and veggies, and thankfully avocados are still safe. Eating so blandly has made it difficult to get adequate calories some days, so I've started eating selective junk foods (kettle chips, nutter butters, mmmm) and I've started cooking with oil again, occasionally.

Another blessing has been daiya cheddar. It's fake cheese that isn't made from soy and it's seriously saved my taste buds on days when I could not cook and had to whip up a plain potato burrito, or something similarly sad. It tastes like a cross between cheddar, american cheese, and nacho cheese, the last two of which are totally nostalgic flavors for me, so I feel like I'm getting that childhood treat when in actuality I just feel too crappy to make myself anything better. We take what pleasure we can get. It's also particularly tasty over a baked potato and a load of steamed broccoli, which is what I had for lunch today.

The pain is slowly decreasing, but I keep accidentally eating foods that are tainted with irritants and now I suspect that my multi-vitamin is triggering pain, which is ironic because I'm only taking it because I'm having trouble nourishing myself on the IC diet.

Hahahahasob.

My head's been temperamental lately, too; the weather, the IC, my restricted diet, the abdominal assault my period waged on my body last week, who even knows the triggers at this point, I'm just trying to keep my sanity.

When I feel like this, just raw from the surviving, every bit of tenderness that's sent my way feels transcendent, small kindnesses are miracles, and beauty is almost painful to behold. I woke early one morning to a fogged-in forest and despite my aching eyes, throbbing back (WHY? IDK), loneliness and hopelessness, the branches of the towering redwoods faded into the fog in such a way that I thought I might die from the magic of it.

Blessed are the poor and sick, for we know the true measure of a moment.


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Dreaming

I had a dream last night, the first I've remembered in ages. I was on a glass submarine.

The sub was floating at the surface, in dock. We moved past a huge old steamship, and I goggled at the size of it; I could see the entire girth of it from inside my glass sub, and it was astounding. Then, we dove. The waves crashed against the glass, and then the sub was engulfed entirely and I was underwater. It was murky, and ghostly fish passed by too quickly to be identified. Then there was a coral paradise, like Nemo's home, and it was brilliant and dazzling and I was laughing and crying and giddy with the experience, totally unaware that I was dreaming. And this morning, when I remembered the dream in a surprised rush, I told my boyfriend the tale and felt like I was recounting an amazing vacation story.

I haven't felt that kind of joy in a long time. I've had happy moments, I've laughed and had good times, but lately I feel like I have nothing to look forward to, and yesterday those words formed themselves exactly in my mind. Nothing to look forward to. I can't have kids. Going to school feels like it'll never amount to anything. My relationships are all faltering. I'll never be well enough to really be happy or free.

Writing it out, yes, I can see depression talking, but isn't some of it, at least, just being realistic?

I used to feel so secure in the world. I'm so jealous of myself pre-migraines, I had no idea what I had.

I think that submarine was some part of my brain sending up a signal flare, We need to be amazing again! We need to LIVE! I need to listen. I need to find a path. Or make one.


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Fitness, Limits, and Flares

Even with how hard I've worked to get physically fit, my head is only slightly better. I'm grateful for the improvements I do feel; I can get out a little more easily, my recuperation time is usually less, and the pain and debilitation are, on average, less than they were when I was neither exercising nor eating vegan.

But I have definitely hit a wall.

My body continues to get leaner and stronger, but my head is stubbornly refusing to improve any further. Which I thought was funny this morning, when I recalled that my burning lungs and aching legs were what used to stop me from reaching the top of our hill when I first started out. Now, I make it to the top wishing I had farther to go, and I wish I could run marathons but my head won't allow more than a few minutes of jogging.

I have been able to continue my now daily hikes with the dogs during this petit heat wave by going out as soon as I wake up, and waking up early. I'm risking getting eaten by a mountain lion, but there aren't that many of them out here, so I think my odds are good. Hopefully! I carry mace, that comforts me a little.

The yoga continues, and my balance has gotten so much better, but those inverted poses still elude me most of the time. But then I feel like an ass for complaining at all, because I used to not be able to touch my toes, because I couldn't reach and because my head wouldn't allow it, but now I can, I just have to breathe carefully. There are improvements. I can see them. I just want more, and I don't think I'm going to get it.

I've graduated from doing pushups in cat pose to doing regular modified pushups, and that feels awesome, but again, it's something I have to breathe through very carefully.

Besides all that fitnessy stuff, I really miss school. I don't know if I can attend a class and exercise at the same time. And take care of my dogs. And myself. I don't know! But I want to try. I have been playing around with some free online courses, like what they have on coursera, I only wish they had a broader selection. And that I could earn a degree that way, that would be nice!

I'm in the middle of an IC flare, so that hurts. It was triggered by a few things, I think. it's tomato season, number one. And probably numbers two through five, I was really having a tomato party for a while there. Then, there were the popsicles; ice lollies, frozen fruits bars, whatever you call them. I bought some from the store without reading the label (I know, WHO AM I??) and they had some kind of fake sugar in them. Before I even realized that though, we got some popsicle molds from the dollar store, and I filled them up with a green juice, naked or green monster or something, and they were DELICIOUS, but acidic as hell so the combination stripped my poor urethra of its protective linings and now I'm crying every other piss. All I can do is restrict my diet severely (no hot sauce or tomatoes, how will I even live) and take baking soda and antacids a few times a day.

In comparison, my head seems mild. Except for the nausea, god it is just ever-present lately. But I've been using these nice ginger chews, called Reed's. They're yummy and really helpful and much less sugar than a whole ginger ale.

I miss being able to write here frequently. I've lost my voice, it seems. I wish I had a working camera, images never fail me.

Hope you all are well. And thanks for reading. <3 More...

Getting Out Of My Own Way

So, things are hard.

And they are harder than they should be which tells me that I'm in a funk. If I ever really climbed out of the last one.

I had Big Plans to look forward this last week, which really shook off some of those lingering cobwebs of depression, but even in the midst of excited preparations, there was a campaign being waged in my head to keep me down. "I can't do it," "I'll mess it up," "I'm terrible at it," I shouldn't even bother." I listen to these voices far too much, but in the excitement of these Big Plans, I threw out my negative self-talk and tried the things I knew I would fail at. Annoyingly and happily, I did not fail, and in fact did a much better job than I ever imagined I could.

I read an article over at Captain Awkward this morning, which is what inspired me to even crack open this blog and put some words down, on Breaking the Low Mood Cycle, and it really hit my nail on the head.

So many things are already standing in my way, I certainly don't want to be one of them.

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So, Optimism

Let's the start off with the bad: My head hurts and I'm nauseated and my neck and shoulders are sore and creaky and my eyeballs ache and there are other things, but hey, that's plenty enough isn't it?

I haven't been writing here much lately. I've been feeling like I have to scrimp and save every scrap of energy I have, but it's my own fault because I spend more of it than I should hiking with the dogs almost every day. They say exercise can be addictive, and I can see how that could happen. Dedicating ten to sixty minutes a day to doing some kind of aerobic activity or strength exercises has improved my overall mood, made me stronger, increased my stamina, and improved my self-confidence.

And usually it's hiking, but I've also broken out the Wii fit (which I still kind of hate for it's body-shaming, but I find talking back to the screen with profanities and rude gestures helps) for a little indoor jogging or yoga. I dance to music, especially when I clean the kitchen. I do pushups and situps sometimes.

I'm holding onto a dread that makes my heart heavy, because I'm going to have to stop exercising so frequently eventually, and I'm afraid I'll lose the improvements I've seen in my head. The heat has already been keeping me more inert, and I often feel the urge to do something more with my life than exercise.

I miss school, but I'm still really undecided about the direction I want to go, and frustrated with my limited options as an online student. I've been "working" a few hours a month at the dog sitters up the street, which is pretty much a dream gig for me. It's even on my usual hiking route so I can get myself there most of the time, it's run by really low-key people and populated by awesome dogs and I've grown to consider them and their dogs like an extended pack.

I've struggled to find motivation otherwise. Sewing, gardening, I want the results of both but they both seem impossible right now. The latter for the drought, so I can hardly be blamed for that, however I do take ridiculous hot showers when my body hurts. Forgive me, unless someone rips me out of that blessed heat, when I ache I can not leave until I am blanched. Sewing on the other hand has no barriers besides my own frustration. I just need to make something new.

There was a wedding a few weeks ago, a cousin married his long-time partner. I made it through the ceremony with earplugs, but as soon as we all started filing out of the space they'd reserved for the ceremony and towards the the building in which the reception was to take place, I found myself surrounded by the perfume of a thousand old ladies, which compounded the effects I was already feeling from the sun and wind, the drive there, talking, the loud pre-ceremony music, and the stress of wearing uncomfortable clothes, makeup and heels. I was suddenly feeling quite ill and volatile and because I very much do not want to insult people unnecessarily, especially on a special day, I shut my mouth firmly in a pleasant smile and steered myself towards the parking lot for an early escape. I did try to medicate before ordering my boyfriend/chauffeur to whisk me back to the forest, but there wasn't enough pot in the world to counteract the overstimulation of that wedding.

My favorite part of dressing up always has been the taking it all off because the feeling of ease is so delicious after all that pinching of shoes and scratching of fancy fabrics; I could not wait to get back into my comfortable clothes, so I did that before we were even on the road home. It felt silly to have gone to all that trouble (makeup, hair gel, properly fitting undergarments, lint rolling my nice coat), but of course I intended to at least try to go to the reception, at which sweatpants would have been unacceptable.

The motion sickness seems to be coming back with the warm weather. It eased some for a few months, only getting bad in the car, but now it's a 24/7 struggle not to guzzle ginger ale all day again. I've got to find an alternate, something with a little less hfcs.

I'm dealing with the heat pretty well so far, though we've only really had a few hot days. One day we hit the mid-90s, and I soaked my head no less than four times, drank water and ate fruit like it was my job, and stayed out of the sun totally, only taking the dogs for a short walk under the trees, and I survived pretty well! So, optimism.

And as a final note in this wandering post, I'd like to share that asking for help is something I don't do easily, but it's something I've had to do recently. I'm very afraid of being rejected or laughed at for my feelings and my failings, or of appearing foolish or weak, and I worry that my relationships can't take the strain of my problems and my needs. These fears aren't the worst things that could happen to a person, though, so I'm realizing that maybe it's worth the risk to share my vulnerabilities, especially if it helps me get to a better place. I've got choices to make and I certainly can't do things alone, so I have to hope that those I turn to for help are open. These are murky, uncharted waters and without a map or compass I can only rely on those around me to help me keep moving forward. Wish me luck.



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Oxygen is Imperative

I have been relearning how to breathe.

I've been taking in oxygen and releasing carbon dioxide like a good little human should, but not quite as reliably as we're meant to. I could blame the issue on being born with only one working nostril, but while that's an odd story, it's not at all the issue. What the hell, I'll tell it to you anyway.

Nostril is a hilarious word, and a totally embarrassing one to have to say to your friends when you are twelve years old, so when I had to have the surgery I told my friends that I was born with a bone blocking one side of my nose and I still use that terminology to this day, if I don't catch myself. Anyway, I was born prematurely, and a piece of cartilage that blocks a fetus' sinuses didn't get a chance to dissolve like it was supposed to, and I lived with it for twelve years. I couldn't breathe out of my right nostril (hehe omg ew nostril) and it led to years and years of sinus infections, colds, and chronic bronchitis, and intensified even the mildest allergy and asthma symptoms. I remember being at my daycare in maybe first grade and having a cold, like I usually did, and trying to eat a snack with a completely blocked nose and realizing that no one around me was holding their breath while they ate, and rushing to chew and swallow before they turned blue. I sure was, was swallowing whole chunks of bread in my desperation to breathe with a full mouth of food, and had been almost as long as I could remember. It occurred to me in that moment that something was wrong with my nose. It just never cleared up. I tried to tell my mom a few times, but either she wasn't listening or I wasn't articulating well enough until I was eleven. I decided enough was enough, stalked up to where she was sitting with a friend in the backyard and told her I'd never been able to breathe out of "this side of my nose". Ever. This other side, sure, it clears up on occasion, but I could never, ever, EVER remember breathing out the right side of my nose. She paid attention that time and booked me an appointment with an ear, nose and throat guy and that was the beginning of the end of my life as a child snot-machine. I still seemed to get sick more often than other people, but at least I didn't have to hold my breath while I ate anymore.


So, nostril stories aside, breathing isn't the perfect autonomic response that biology classes would have me believe. As a weirdo only child, I used to pay attention to my breath and lose the rhythm of breathing entirely. I would be struck (every time) with a mildly amusing panic that I might not be able to breathe easily ever again. I'd try to think of something else, let the automatic processes take over again, but my mind was noticing every little hitch of my chest, how the air flowed into my lungs, how it filled my body and how my torso rose and fell, and breathing was certainly not a normal action that I'd been performing without thought since birth, but it was a phenomenal, complicated, probably supernatural, bizarre sequence of events that were completely impossible to keep straight. It was almost like when you say or write a word so many times over and over that it loses all meaning; I could no longer let the autonomic functions of my body just go, the analysis had ruined breathing, and possibly forever. So, resigned to a life of concentrating on inhaling and exhaling, I'd breathe as best I could, trying not to show my worry, even miming the in-and-out inhale-exhale motions that the people around me were making with their bodies, and hoping no one around me could hear how I was totally failing at even breathing. After several agonizing eons that were likely only seconds, I would inevitably be distracted and my body would continue breathing without my obsessing, miraculously. Muscles expanding and contracting when they should, with no prompting from me whatsoever. I grew out of this quirk, and hooray for that, because while it was never scary or really stressful, it was seriously annoying and made me feel like a total weirdo.

And a third breathing anecdote: As a child, I loved to run. I was the fastest in my class for a year or two, but I was always more of a sprinter, and found distance running to be rather horrible. I never questioned my preference until recently when I realized while hiking that I'd never learned to breathe properly. My body can take care of the basics (as long as I don't think about it too hard, haha sigh), but when I really push myself or if I'm focusing very intently, I often hold my breath. I never noticed this before migraines, but now holding my breath often bites back immediately with major head-pounding, truly it's one of my worst triggers. Relearning how to breathe through focus, pain, intent, tension, anger, fear, and excitement has been a constant challenge, but it's probably good for me to be breathing through these things anyway.

When I was first trying to push my stamina and strength while hiking, I was so easily tired out, I'd have to stop every ten feet or so. At first, I continued to rest when I needed to, but at some point I noticed that that my muscles weren't at all tired, I was just breathing too desperately to keep going, which eventually led to be the revelation that I wasn't just exercising inefficiently, I was HOLDING MY DAMN BREATH. So, I started practicing breathing. I typically start out my hikes with an inhale every two steps, even if it feels fast. As I continue up the hill, my body uses the oxygen quickly, and about halfway up my brain starts sending out Exhausted signals, but instead of resting, I speed up my breath to an inhale on every step. It feels unnatural at first, but I was shocked by how easy exercise was when I was getting all the oxygen I needed, I really couldn't believe it. I could exercise until I was tired, and then keep going! My exercise-induced migraines are MUCH less frequent when I'm breathing properly, and increasing my time and distance has increased my stamina by about a billion-fold.

So, this breathing practice is starting to bleed into my regular world, too. I notice when I'm holding my breathe from stress or concentration, and forcing myself to breathe through these things that normally make me clench up has been eye-opening. Instead of my body clenching up and powering through whatever stress, I'm learning how to work with it, let my body feel the stress and also feel how we can keep breathing if we want to.

We can keep breathing if we want to.

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Being Offline and Poor

We lost internet for a few weeks, and it was a painful reminder of how fragile my sense of connection really is.

We live way the hell up in the mountains. Our closest neighbors are within distant earshot, but not eyesight, due to the trees. I depend on the internet to keep me connected to the happenings in the world, and to my family and friends. Without it, I was totally alone. Just me and the dogs in the middle of the forest. My boyfriend would come home at the end of his day to find me wild-eyed, so eager to talk to another human that I couldn't even wait for him to get in the door.

Besides being desperate for contact, I was unable to answer surveys or look for housing, I couldn't apply for services, or look up recipes, or search for diy fixes to minor home repairs.

My neighbors are kind and allowed us to vampire off their wifi during visits, but we tried to be sparing with our usage as to not abuse our relationships. They probably wouldn't have minded, but I'd rather go without than interrupt their peace. If I was in school, however, I likely would have unapologetically set up camp.

Also during this time, we got a 48-hour notice from the water company, and had to pay a massive electric bill. The money was coming in, it was just a lot of unfortunate timing, and we're back online and mostly in the black on our utility accounts, but now we're already nearly broke for the month and are low on food. We renewed the food stamps this morning (and in an ideal world we wouldn't have ever stopped with them, but the renewal process is a pain and it seems like even when we get it right, there's a problem and we have to start all over again. It's a whole 'nother post.) and I'm not sure how long it'll take to process, but we plan to check out the free food pantry tomorrow, as long as we have enough gas to get there.

It's stressful being poor, and exhausting. I need to see a dentist, but we can't afford it. HOW is dental care not a mandatory part of health care? I'm on Medicare, WHY do I not have an affordable dental option?

And with all my woes, I'm one of the luckier ones. I'm white, I have an advocate, I have the education and access to information to protect myself, or at least to try. We have the means in this country to provide ALL of our citizens with a standard of living that should be a shining example of what civilized behavior and compassion look like. But instead, we ignore, relocate, imprison, mock, blame and fail our poor, while the rich get richer every day.




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I Am A Tuning Fork

Another thing that really sets my teeth on edge is haptic feedback in electronic devices.

I can't use a smartphone that has this enabled, it's like every fatal keypress has a jackhammer going off in my brain. I can't explain why a little vibration in my hands will cause me to swear and feel sick and cry and throw the phone down in frustration, but learning to turn this option off is the first thing I figure out with every smartphone I handle.

I experienced this before migraines, too, but not as dramatically. Back when I used to play console games, some of the controllers had "rumble packs" in them, which would vibrate when a player took a hit, or crashed, or won the game, etc. Every time a rumble pack-enabled controller would vibrate in my hands, I would yelp and drop it, or force myself to hold it and curse the whole game from near-rage, though more often I would just stop gameplay and insist on changing the settings, another trick you learn quickly when you're a human tuning fork. It's just like that feeling of Chinese water torture, but in every cell of my body. I feel like screaming, or blowing apart into wee steph chunks, but instead, my neck, shoulders, back and jaw involuntarily clench, the nausea starts back in, and I have to force myself to breathe through the vibratory echoes that will continue to haunt me until they are durn ready to fade on their own terms, which is usually minutes, but if it hits me at the wrong time, could definitely last hours.

And I call myself the human turning fork because in elementary school my science teacher brought a few in and demonstrated how an inert tuning fork held near a vibrating one will take on that vibration. I hated these experiments because again, the sound of the tuning fork made me want to rip own head off and chuck it at the teacher, but this one stuck with me because I AM that second tuning fork, and I think I always knew it.

Other sounds that make me feel like I could start fires with the chaos in my mind, in the same tuning-fork way, include but are not limited to: bagpipes, jazz with excitable horns, and scraping.

Let me tell you about how much I hate bagpipes. (I'm sorry bagpipers, I understand yours is a craft steeped in ancient tradition and history, and I'm sure that people who aren't human tuning forks enjoy it, but I so do not.) When I was a kid, a second cousin from back east came to visit, and this cousin happened to be a bagpiping kind of guy. So, we all gathered in my grandmother's backyard, one hot, late afternoon, and he, dressed in full tartan and kneesocks with the cutest little glengarry perched on his head, played us a little concert. I'm sure it was a lovely performance, but all I could hear and feel was the undercurrent drone of the bag as it breathed, like a massive, living, paisley lung that was hell-bent on destroying my brain with its all-consuming resonance. Under the assault of both the afternoon sun and the unrelenting sound, I wilted like a flower in a microwave, and it's one of the few times in my childhood I remember thinking I just might pass out, I felt so frighteningly ill.

So, haptic feedback. I lost my phone, and had to set up a new one, which was probably for the best anyway since my new (but still used) phone is way better than the old one, but this phone keeps switching into an audio profile that allows vibration on keypress and I haven't figured out how to avoid this error because by the time I turn it back off I'm already vibrating and it's too late for me. Too late.

I don't know what this is all about. I'm apparently a sympathetic resonator, and I strongly suspect it's a migraine thing. Anyone else?


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Health and Tools

When I first switched over to a low-oil, vegan diet, I was concerned about making sure I would be getting the right amounts of nutrients.

(Content Note: This post discusses disordered eating and dieting.) I've been warning people of my impending veganism for a few years. I'm not a person who makes life changes on a whim, and I make it a point to go into any and every situation with as much information as my brain can hold. I've been working up to it because it's not an easy thing to be vegan in this world, especially being a chronic migraineur and so incapacitated some days that I can't cook at all. I knew my best chance of success lie with educating myself, because if I allowed myself to become nutritionally deficient, I could get sicker. And I also worried about my mental health.

My history of disordered eating has made this change an interesting one for me. Because I have this history, dieting in any way is a minefield. I have to ride this fine line of paying close attention to what I eat, but not obsessing. Exercising frequently, but not too much. I have not been entirely successful in my past attempts to healthfully diet, mental slips have happened, bad habits have reignited, and I've slid down that slippery slope too many times to enter into any exercise or dietary changes without a certain amount of trepidation. I hesitated to embrace these changes I've been wanting to make for years because I wanted to do it right, and I wanted to make sure I stayed ok.

So, education: There are a myriad number of ways to learn about food and nutrition. Some of the sources I've delved into include: documentaries (Super Size Me; Food Inc; Forks Over Knives; Fat, Sick, and Nearly Dead), tv series (Jamie Oliver's Food Revolution), books (The Food Revolution, The China Study), cookbooks (Veganomicon), and blogs (Happy Herbivore).

I also took nutrition and health courses at my local community college, which gave me a lot of information about biology and how our bodies use food. Learning the objective facts of nutrition has been excellent for beating back those always-wrong demons that continue to live in my head. They'll always be there, I think, but facts sure do keep them quieter.

I decided pretty early on that I would need some kind of monitoring system in place, and while hand-tallying my calories would surely have led to obsessive thoughts and behavior, I was excited to realize that using an app for the same purpose hasn't had (too) much of that effect at all. The first and only app I tried is My Fitness Pal for Android, and it has been really helpful for keeping me accountable.

Upon sign-up, I entered my weight, my activity level and my goals into the app, and it formulated a basic caloric-intake plan for me. Every day since, I've entered 99% of my food and exercise, the app tallies up all the micro and macro nutrients, adds and subtracts calories consumed and burned, tells me how I'm meeting my immediate needs, and, even better, allows me to see my patterns and progress over time. Check it out, you guys: CHARTS!!!!

Look at that progress! It's so much easier to keep going when I can see the evidence of all the hard work I've put in so far. (Also, this is my excuse for the sparse blogging happening around here. I've been busy hiking! SEE!)

This app is good for dieters because it's easy to see how each meal, each food, each ingredient can influence your overall nutritional intake, and it makes it easier to make good choices, when we can immediately experience our consequences. This app can also be a good tool for people with eating or exercise disorders, because it holds us accountable for eating enough calories, and gives a red-tinged alert if the daily tally isn't sustainable.

However, I haven't made it through this without a single unhealthy thought or behavior, just less of them than I've experienced in the past. I'm not recommending this app as any kind of a panacea for ED because: of course not. But this works well for me, helps me stay accountable to myself, and I've maintained a consistently healthy diet and exercise routine for over 100 days, thanks in part to My Fitness Pal.



I was not compensated for this review, just love the product. The app and online tools offered by My Fitness Pal are free.


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Mud and Feasts

I love the rain, and a week-long soaking had me out with the puppies for hikes every day.

The first few minutes they hated it, they'd drag behind me and look back wistfully at the house wondering why I would so cruelly rip them away from their respective warm spots, but once we got moving they'd succumb to the inescapable allure of sniffing and adventure with enthusiasm; they love a good soggy hike as much as I do, if not more.

Our walks have been longer lately, in part because I was loving going to the very tippy top of our hill to check out the little creeks that the rain made. Since our part of the mountain is all clay and sandstone, in areas where the water regularly makes it way down the slope, it's eroded a small, ancient-looking river that's created small pools and waterfalls as it flows over and around roots and rocks.

But, the mud can be precarious, so our walks during the rain and since have been not only longer, but slower. I've slipped a few times, and only suffered momentary injuries in both falls because I was able to catch myself, and control my fall to an extent. I would have been hurt far worse only a year ago, because my arm wouldn't have had the strength to stop my fall without injuring my wrist, my legs wouldn't have been sturdy enough to slow my slip, and my core muscles were virtually jelly and would have contributed nothing to my rescue. So again, hooray for fitness.

My head has been consistently reacting to this increased exercise, unfortunately. I was hoping I'd see the pain and symptoms decreasing over time as I built my stamina, and they did -- to a point. I'm dedicating this academic quarter to my physical fitness, and like school, this endeavor is taking up most of my energy. I've been hiking my heart out every morning I can, then spending most of the rest of the day curled up in my comfy chair, nursing my head and trying to be productive on the internet (or giving up and watching a star trek marathon). My next priorities are cooking and dishes and laundry, but also, more working out. If I have more energy, I often put it to crunches, squats, pushups, yoga, and maybe even another walk. I am serious about getting my body back into shape, and believe that the harder I work now the easier it will be to maintain when I return to school.

I'm continuing to see improvements in my stamina, so much so that I accompanied a friend who is also a dogwalker on four 30-minute hike/walks in one day, with lots of dog handling and conversation, and I barely felt the pain at all. Well, later I did, but the repercussions weren't any more than usual.

Another side effect of all this exercise is that every few weeks I get to pull out the box I've had for at least 7 years, labeled PANTS! that don't fit, and see where I am with the stash I've collected over the years. I'm slowly creeping down the sizes now, which is kind of fun; it's like my birthday once a month, except I have to give my old pants up to get the new ones. There are a few pairs of jeans I've become unreasonably attached to, and I find myself hesitating in disposing of truly unremarkable and often damaged items. I mean, just because they are several sizes too big, ripped and really obviously repaired, and at least five years outdated in style, doesn't mean I have to get rid of them, does it?? (Yes, it does. Stop hoarding pants, weirdo.) Ok, then.

And on the food front: craving healthy foods is one benefit of eating well that I never really believed when anyone else said it. When I get that night-time sweet tooth, I definitely still indulge when I really want to, but usually I can satisfy those cravings for sugar with fruit. An orange or a banana might just hit the spot, and if not, GRAPES. I have never had a sweets craving that couldn't be cured by eating a cup or so of grapes.

And celery is a new and surprising love. I have historically never liked celery, but suddenly I am literally jonesing for it, I love the flavor and the crunch, and it's a perfect carrier for this white bean/peanut butter spread I'm also fascinated by.

I made a superbowl vegan feast, though I had to cook it slowly over two days to manage it all. I made buffalo cauliflower with a tofu-based ranch dip, and a flatbread with homemade pizza sauce, pineapple and teriyaki tofu; these were my vegan versions of my childhood football favorites, buffalo wings and hawaiian pizza. It was completely satisfying and the success gives me more confidence in cooking big meals in the future.

I'm so inspired by plant foods and refocusing my diet from dairy and flour to plants has made me want to learn more about food, nutrition and agriculture. I want to cook more, I want to grow my own food, and I want to know how it all works, from the growing to the digesting. I have to eat several times a day, every day. I want to make the most of it.






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If and Maybe

If my life was a fairytale, the wicked witch that cast this curse upon me is jus' jelly and as soon as my true love shows up and plants one on me, I'll be fine! Happy, in fact! Ever after, even. My boyfriend will be glad to hear it.

If my life was a movie, my migraines would be indicative of poor life choices or self-loathing or that I need to forgive my father. Once I overcome my obstacles (in montage, accompanied by a kicky pop song) and tearfully reunite with all of the people who have wronged me, the pain will lift or at least I'll have some kind of epiphany wherein I realize that the pain was never about my head, but about my heart.

If my life was a song, it would be bluesy and melancholy, or country and woeful, or rock and angry, or pop and hopeful.

If my life was someone else's it would likely look different. They might use triptans, or reside in an assisted living apartment. He might have a kid that also suffers when daddy suffers, or she might have kept working long after I did, having found strength that I simply could not summon.

I'm not sure what I'm getting at here, honestly. It's all stories, different versions and perspectives, different morals and attitudes, different reasons for sharing the things we do. My story is winding; sometimes wild and strange and sometimes so boring we could all cry from the dull. But when I tell my story, what's important? Surviving the pain, or when it beats me? My good days or bad? Is it possible to live the story while telling it, and do both effectively?

I'm not sure. Maybe not with migraine, maybe not for me. But that won't stop me from trying, because MAYBE I CAN.


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Reclaiming and Prioritizing

I apologize if no one wants to hear about my diet and exercise, because that's what I'm really focused on right now and I'm feeling good and I'm happy about it, so blather blather blather here I go.

Every day, it seems, I'm bouncing back faster and can go longer. When I'm medicated well and having a good day, I can do almost anything. I can run. Well, I mostly jog, and it's still pretty brief and rare, but I can do it and it's been so long since I felt my heart beating hard and my breath coming fast without my head also immediately screaming out in protest, it's pure euphoria. Like reclaiming music, and dancing for the first time in years, being able to run and move easily again feels like an enormous freedom, a gift I never expected and would never have even hoped for.

I took this quarter off school, and I'm feeling a strong pull to use this time to focus on my physical fitness and experiment more with this vegan, whole-foods diet I'm rocking. It's difficult to really push myself physically if I have anything else going on in my life, because migraines only allow me a finite number of spoons in a day, and I don't have any idea what that number might be, so it's a huge gamble to spend more than a handful on exercise because I could easily not be able to do anything else for the day after even a gentle workout. So, if I know I want to have dinner with my parents tomorrow, or have to go grocery shopping later, or just want to finally get all the kitchen clean at the same time, I sacrifice my fitness goals for the sake of having a (relatively hygienic) life. And then we add school to the equation, and exercise is even further backburned for the sake of my coveted, beloved, necessary-as-oxygen As. Oh, I will not get a B, I will not.

Like today, I did a half-jog, half-hike up the hill with the puppies, I cleaned the fridge, and that might be it for me for the day. Possibly longer, depending on luck and triggers and whatever gods you all believe in. But, I still have a chance of getting back up and getting something else done, or taking the puppies out, or getting more writing in, because belting out this post is leaving me kind of optimistic for the rest of the day.

Which is something else I'm going to be needing to reclaim soon enough, my optimism abandoned me a while back, and I've felt its loss more dearly lately. It's time to find the bright side again, even if I have to wear shades to endure it.

My current migraine treatment plan is exercise, vegetables, and marijuana, and I feel the best I've felt in nearly seven years. Expect further rambling updates.



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Treatments and Needles

Doctors. They don't know everything.

I just came across this little article, and it was quite interesting, but not at all surprising to me: Headache Docs List Top 5 Tests and Treatments to Avoid. The list goes:

1- Don't perform neuroimaging studies in patients with stable headaches that meet criteria for migraine;

2- Don't perform computed tomography imaging for headache when magnetic resonance imaging is available, except in emergency settings;

3- Don't recommend surgical deactivation of migraine trigger points outside of a clinical trial;

4- Don't prescribe opioids like oxycodone and drugs containing butalbita like Fioricet – for patients who get headaches often;

5- Don't recommend prolonged or frequent use of over-the-counter pain medications for headache.

Those last two are what made me think I was going crazy for the first two years of this adventure. The first place I went for treatment, Kaiser, pushed Motrin on me like they were candy, told me it was a stress headache and I needed to relax. The Motrin didn't do a thing, unsurprisingly to anyone who has ever had a migraine, but when I went back and asked for another solution, they'd just refilled the prescription and sent me on my way. Then, my insurance changed and I saw a doctor who prescribed all the drugs, including every painkiller ever, but while I was drugged into a semi-compliant stupor, I saw no positive effects in my head. When I remembered I even had a head, that is.

Western medicine has failed me thus far, I've seen some truly terrible doctors and have been recommended some truly terrible treatments.

HOWEVER, I recently had an appointment with a new PCP, and she's fantastic. She seems kind and sensitive and supportive and inquisitive. She's made some suggestions that I'm trying to follow through on, and she even got me to get a flu shot.

Which I'm going to talk about now, so needle-phobes, you might want to skip the next five paragraphs.

I've been slowly developing a needle problem; every time I've gotten a shot or had blood drawn in the past several years, it's ended up being a bit of an ordeal, and I think it's getting worse.

The first instance was years and years ago, pre-migraines even. I went in for dental work and they came at me with the needle and I jumped out of the chair and yelled profanities that my mind has graciously allowed me to forget. They did their drilling sans novocaine that day, and I was fine, but for the future, I noted that I really need to not look at the needle that will be going into my mouth.

I've told that story several times over the years and I always laugh, it was so long ago that the visceral terror I felt when I saw the needle coming at my face has faded to a strong unease in my memory. I've had blood drawn over the years and a few shots; I was never comfortable but I'd take deep breaths and be largely ok. The last time I got bloodwork done was kind of traumatic, but I wouldn't expect to have such a bad experience again any time soon.

So, when I agreed to get the flu shot, I thought it would be no big deal. The nurse approached me, I was fine. I pulled down the neck of my shirt so she could get at my shoulder, I was fine. She started fiddling with her equipment, swiped me with the alcohol and I suddenly got so nervous, I was quite unprepared for it, and I asked my boyfriend to hold my hand. He came to my side and the nurse asked him to hold my shirt down over my shoulder, since my own hand would be occupied. So, he's on my right, holding my right hand, and then he puts his arm around me expose my left shoulder and I FUH-REAK. I start thrashing and wriggling away from the nurse, and I tell my boyfriend not to hold me down. He sounds surprised when he says that he wasn't, and I know in my brain that he wasn't, but my body went into total fight-or-flight mode, and his arms around me plus needle approaching were a terrifying combination in the moment.

I took a moment to recompose myself and my boyfriend intentionally held me very loosely to help me relax. The nurse was a pro and as soon as she had consent, the shot was done and she was cheerfully out of there. The tears never quite flowed, but my eyes were wet and I could hear the quaver in my voice, I was relieved that the scary thing was over, and super unnerved that a simple vaccination should be such a scary thing. I really don't need a needle phobia.

I'll be getting more bloodwork done soon, hopefully, and I'm really interested to see how it comes out. Last time, I had high cholesterol, low Vitamin D, and a high ESR. I'm willing to bet that my cholesterol is better now, since I was eating eggs and dairy daily back then and wasn't exercising much at all, and I'm really hoping it's some amazingly perfect number that I can brag to everyone about, because that's always fun.

I'm also interested in seeing the cholesterol results because I discovered another effect of changing my diet, and it was unexpected. Since at least my early twenties, I've had a sort of yellowish stripe in my eyes. It wasn't really obvious, but I first noticed it when I used to wear eye-makeup, and I never knew what it was attributed to. I originally thought it was from smoking, but it didn't go away when I quit smoking. I mentioned it to a doctor once, but he pretty much shrugged and said it was nothing to worry about. Okay, then. I realized the yellow stripe was inexplicably gone about a month after I changed my diet, so I googled it again -- previous googling of yellow-eyed symptoms returned lots of jaundice hits, which is not what it was, surely I would have noticed the liver failure by now -- and when I combined low-oil into the terms, suddenly I had my answer: dirty sclera. The internet tells me that it can be caused by (among other things) high cholesterol, and because my sclera cleared up so suddenly after changing my diet, it felt like the first real evidence that going vegan and low-oil was the right choice for me. You know, besides the higher stamina, more regular poops, and near-immediate weight-loss. It's been a win-win-win-win!

A few days ago, my boyfriend and I were talking about my experiences with medical professionals and he noted that I haven't really made any progress on that front in years. I agreed, but then pointed out that while I've been a rather non-compliant patient, I've made HUGE strides in my physical fitness, in learning how to better medicate with marijuana and extracts, and I've made so many positive changes for my health that no doctor had ever suggested to me, I could hardly be considered stagnating. I would like to try again with western medicine, but the past few years have proved to me that my intuition is to be trusted just as much, if not more, than any doctors' I see.






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The Politics of Losing Weight

Due to my dietary changes and an increase in exercise, I've lost a noticeable amount of weight.

It brings up a lot of old issues for me, and I feel I've been dealing with it mostly successfully. Then, I see someone I haven't seen for a while and they comment. Everyone loves to comment. There was a time in my past when I would have reveled in those comments. Those comments were part of what drove me to diet unhealthily as a teenager and I savored each one like it was a canape at a party I'd never be invited to again. Now, however, I dread them, they make me feel a part of a system that forces women to strive for a certain kind of perfection that isn't actually attainable. So many of us torment ourselves our entire lives to try and fulfill whatever aesthetic quality we think we're lacking. Some men do it, too, but it's not the same as the requirements our culture has for women to be fulfilling -- and if not, constantly striving for -- the unrealistic ideal.

Coming to realize that the world, since my birth, had conspired to force me into a wee box of performed femininity that just does not work for me, has been pretty great, actually. I realigned society's expectations of me with my inner feels and determined that I would be ok if I hardly ever wore make-up. And that probably no one would even notice.

My weight, however, is something that people always seem to notice, and feel super free to comment on, and I'm sure men encounter a version of this as well, but there are far more women with whom I've had to engage in this strange appearance-based verbal dance upon every meeting (You look so good! Oh no, I look terrible. You look thinner! No, you look thinner!) and it is exhausting.

I can usually see the good intentions. They mean to congratulate me for a job well done, to compliment me and perhaps find out my secret. But, I don't enjoy having my appearance publicly praised anymore. It makes me feel like a show dog who went to the pricy groomer this time. Besides, not everyone loses a bunch of weight because they want to wear a bikini, sometimes they lose weight because they can't afford food, or they're ill. Both have happened to me, and responding to a "You look great! How did you drop the weight?" with a raised eyebrow and a dry, "I'm poor," was really satisfying. I'd drop the awkward like a mic and walk away like a boss.

But, I don't have the energy for all that sass anymore, and this time my avenue of weight loss will be LOADS more fun for people to quiz me on (diet and exercise, THE WORST), so I've just got to avoid the subject, unless I want to piss off the diet junkies by refusing to waste my precious energy on regaling details of my diet and your diet and that ridiculous diet and that other ridiculous diet, because it's so. boring. and really rather stressful.

But you may have noticed, in this era of reality weight-loss tv, that being fat is bad and losing weight is the truest path to righteousness. Let me insert here that I believe this to be an incredibly narrow view to have when more than half of the nation is overweight or obese, and I find a lot of truth in the Health at Every Size movement. There are plenty of healthy fat people, and there is obviously something more happening in the world than an overeating epidemic.

I don't want to have body-obsessed conversations anymore, none of us should be envying another person's waist and feeling bad about our own. Or thighs, or hips, or whatever body part is making us feel inadequate, because we're a lot more than the sum of our parts.

I am proud of my weight loss, however, in the way that it's evidence (for me) of better health. I've been able to be more active, I'm eating the way I've been wanting to eat for years and I feel so much better for it. I gained a lot of weight when I first got sick, due to the meds they had me on and being unable to get off the couch for weeks at a time, so now that I'm approaching my pre-migraine shape again, I feel like I'm regaining a piece of my life from this stupid, frustrating disease.

I might have a secret weapon against the diet-junkies however. Very few people really want to hear about veganism. My facebook feed has at least one bacon post every day, that's just how my closest friends and family tend to roll, and my previously pescetarian lifestyle was already an oddity amongst those I care about, so going vegan has gotten me lots of blank stares. I do get the protein question, but once I point out that a protein deficiency is nearly impossible to come by, particularly in well-fed USians -- and I can assure you, I am certainly well-fed -- the conversation dies. Everyone's heard of PETA, unsafe farming practices, the environmental impact of livestock-raising, and hormones in meat, but almost no one really wants to know about it, so most people leave me alone once I utter the dreaded v-word because ignorance is bliss, isn't it?

It may be, but I'm finding it more true that knowledge is power. Ignoring the impact our choices have upon our bodies and the world around us doesn't change those consequences, it just makes us lazy, complacent, and selfish. I feel that by educating myself, looking the facts straight in the face and making changes, taking responsibility for the ripples my life is sending out into this world and the people around me, and doing my very best by myself and all of you, I am a force for good in the world. And that's really all I could hope for.




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IC and Me

I wrote about having interstitial cystitis nearly a year ago, and since then, I've become the master of my own urethra.

I had a flare a few weeks ago, my first in ages, and I was really happy with the way my self-treatment worked out. The best information I've found about IC has come from other patients, on forums, and I owe those people a big thank you for their tips and advice. The best way for me to be grateful is to pay it back, so I'm going to share my own experience for all the future anxious googlers with IC. Hello! I hope you find some helpful info here.

At the first twinges, I suspected it was the orange juice. I never have more than a two cups a day of any citrus, and I never have it more than three days a week, and that usually works for me, but I think I'd worn tight pants, or committed some other IC sin that in combination might have set me off. I remember the orange juice, though, because I had to cut myself off and jealously watched my boyfriend finish it over the next few days.

This happens less than once a month lately; I'll have a day of urethral pain, but once I take measures to be kind to my pelvis, it will usually clear up. This pain continued, however, so I had to investigate further. I upped my water intake, stopped wearing underwear, and only wore non-restrictive pants. To make sure I didn't actually have a urinary tract infection (UTI), I took a dose of D-Mannose. If it was a UTI, the D-Mannose would flush the offending particles out of the urethra and help the healing to begin, and the dose would not increase my pain. If it was interstitial cystitis, the pain would only get worse after taking the D-Mannose. The trouble is, with my IC, it can appear with a UTI, masking the advancement or decline of the infection itself. So, when my pain worsened, it only confirmed the presence of an IC attack, not necessarily the absence of a UTI.

I used to use cranberry pills in the same way, but find them to be too destructive to my urethra. The pain from a D-Mannose dose will last hours, but from cranberry it can last all day, or longer. I actually avoid cranberry juice and supplements now, and I suspect my overuse of them during my recurring UTI years contributed to my developing IC. (However this is just my own theory and there is no known cause for IC, though frequent UTIs and other pelvic disorders do seem to play a part in its development.)

The symptoms I experience during an interstitial cystitis flare are very much like what I experience during my urinary tract infections: burning like acid-fire during urination, with most of the pain centered on my urethral opening, and that pain can last for twenty minutes (forever?) after each urination, making the next troublesome symptom, the constant need to go and often only producing a few drops, even worse. As soon as my lady bits have calmed down after my last piss, I've got to go again. Torture, is what that is. Then there's the blood in the urine, a heaviness and pain in the bladder, the pelvic bloat, and sometimes even a low fever.

At this point I have the option to take pills specifically for urinary pain relief, we got them at our local pharmacy, Phenazopyridine Hydrochloride 95 mg (generic for Azo), which I'm pretty sure is the same thing as the prescription for pyridium I used to get for my UTIs. It works GREAT for that pain, but doesn't do a thing for the IC. This has been another indicator of having an IC flare instead of a UTI, historically, but I skipped it this time, because I was pretty sure it was the former and saw no need to waste the pills.

For pain relief, I can use a heating pad or ice packs, or I might drink several cups of water then take a hot shower and pee at will. I know, that sounds super-weird, but I think it helps psychologically, if nothing else. The water in the shower eases the pain quicker, and I feel like the more my IC flaring body pees, the faster the symptoms pass. Plus, when urination becomes unendurable, taking it from a 10 to an 8 can feel like the world's biggest relief. It's something.

The only thing that helps my IC pain quickly and significantly is a topical lidocaine my doctor prescribed me. Specifically it is a tube of Lidocaine Hydrochloride Jelly USP, 2%. After a painful pee, or when the burning and aching just won't fade, I slather a bit of that on my urethral opening and the relief is fast. It doesn't usually take the pain completely away, but it can bring it from a 10 to a 5 within moments, so again, it's something. However, I wouldn't want to have to rely on this method for long periods of time, since I have to reapply after every pee, which I estimate to be 20 times a day on a bad day. Honestly, it may be more, I've never counted because it's gets ridiculous and upsetting. But, the point is, who knows what all that lidocaine could do to my junk over time? I'm concerned, but so far it's my best option for pain relief.

So, the pain got worse from the D-Mannose, I suspected IC, and my next move was to switch to a way more alkaline diet, nothing but water to drink and very mildly spiced foods, limited refined sugars and flours, and absolutely NO acidic foods. I also took a teaspoon or more of baking soda in water each night, which actually can help with the pain, if I catch the flare early enough. As I changed my entire routine to ease my symptoms, I looked for any little thing that could be triggering the IC, and I was delighted to realize I'd recently decided to try liquid stevia in my tea. I was delighted because that meant I didn't have to give up my beloved tomatoes and peppers and hot sauce and vinegars, and I'd just have to limit the stevia. Which is actually a rather nice sweetener and I would recommend it to anyone looking for an alternative to sugar, unless they have IC, then I'd tell them to try it carefully.

BUT, I suspect the real problem might be the the alcohol in the liquid stevia. I was only using a few drops at a time, so it seems like an intense reaction to have, but whenever I can rally up the funds, I'm going to try again with a non-alcohol-based product and see if I have better results. I really like the stevia, I hope I can use it in other medium.

For me, prevention is really the key with IC, and I find I can get away with almost any bad behavior in the short term if I've been otherwise chaste. I consider myself very lucky that my IC is only as bad as it is, I know and have heard of women (do men even get IC? I have only ever seen women on the boards. Huh.) who can barely walk, who pee every fifteen minutes, 24 hours a day, who eat depressingly restricted diets that don't even always help, who can't leave their homes, ever, because the pain and other symptoms never recede. Sure, I had to give up alcohol and caffeine and will never wear skinny jeans (WOE IS ME), but I can still have OJ and even lemonade rarely, all the tomatoes I want, vinegar for everyone and sometimes I wish I had a pressing reason to give up sugar. I've had to make sacrifices, but I'm just grateful I've been able to keep what I have. Mushrooms, don't ever leave me.

So, the symptoms faded fast once I cut everything out, within 24 hours, and then I just added it all back in after two full days of no pain, minus the stevia. There have been no further twinges, and no more frequency in urination than usual. The flare has passed and there doesn't seem to be an underlying infection, so I'm pretty excited to not have to see a doctor.

When the flares fade, I'm not left symptom-free, unfortunately. I always get up several times a night to pee and I have urgency issues and full-on urinate in my pants at least once a year. My symptoms increase with every trigger I risk. Caffeine, alcohol back in the day, tight pants, sex, stress, and citrus can all increase my symptoms, and while I've cut some triggers out entirely, others are harder to avoid, (or I love them. Come here, tomatoes, let me show you my love.) and so I try to be mindful of my choices, and pay attention to my body's subtler signals, because she does tell me when I'm screwing up, if I'm willing to listen. And if I'm not, she'll start screaming at me via IC or migraine eventually, so it's really much better to pay attention to the whispers.



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A Little Gratitude for the New Year

I can only hope that the rest of this year is as quiet and satisfying as my new years' eve and day were.

My boyfriend had work for much of the eve, so I had dinner and the later cocoa alone, just me and DS9 and the puppies. I spent the evening making a list of goals and wants for the coming year(s), then went to bed by nine. No midnight shenanigans for this lady, I need my sleep!

The next morning, I tore the goals into strips and burned them individually, while repeating to myself these things that have become so important. It was a nice moment of reflection.

I then made myself a vegan breakfast feast to welcome the new year. I'm obsessed with the Happy Herbivore, and I got these recipes for french toast, tofu scramble, and country potatoes from the first book. I highly recommend these books and the blog for vegans and omnis alike. I was making an obscene amount of nomming noises as I ate, and I'm really proud of myself for taking a picture to share because it was a phenomenal start to the new year.

I've been cooking a lot lately, from the Happy Herbivore resources and other vegan books I've gotten from our local library, plus the internet: it is an endless source of inspiration.

I'm not sure what to expect from this year, things feel very in flux right now. But rest assured, I'll let you all know if anything interesting happens.

And while I'm thinking about the future, let's talk about this blog. I've been flying by the seat of my pants here lately, and I would like to give myself a bit more structure. So, topics I'm planning on addressing in the near future include, but are not limited to: 1. A trip to smog the car: when invisible disabilities become visible/migraining in public. 2. Interstitial Cystitis, How I Deal. 3. In-depth examinations of exercise on my head. 4. Food. 5. Kids: should I have them? 6. The power of woo: a skeptic's consumption of homeopathy, the mind-body connection, and herbal remedies.

What do you think, readers? Any of these topics interest you? Is there anything you think I should write about? Any questions? Comment, email me, let me know.

Because sure, I'm writing for me, but I'm also very much writing for you, and let's be honest, writers tend to like being read. Thanks for reading what I write, and for the comments and emails, you all give me a sense of connection and commiseration that I hold incredibly dear.

Thank you. <3 More...