Wednesday, December 10, 2014

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."


Thursday, November 27, 2014

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.


Monday, November 10, 2014

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.


Sunday, November 2, 2014

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.


Tuesday, October 28, 2014

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!


Monday, October 20, 2014

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.


Friday, September 12, 2014

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.


Monday, September 8, 2014

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)


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.


Tuesday, September 2, 2014

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.


Sunday, August 17, 2014

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.


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.