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...