Saturday, January 30, 2016

Better, Worse, Same

I'm not really here.

I'm having to force myself to come here and write, and even when I do I'm leaving half-finished drafts when I inevitably run out of steam. And what's worse is that I'm essentially rewriting the same post over and over. I see the older drafts, maybe even give them a once over, think, "I could rewrite this better from scratch." Start all over and get confused/distracted/tired at roughly the same place on every one.

So my brain is weird right now, in that sort of unfocused way, but my emotional well-being has been better. I'm unable to get mental health care through my county (I'm not addicted to anything or actively self-harming/willing to be institutionalized for it, and that's the limit of their powers right now) so I've been taking St. Johns Wort regularly and it's been helping with that wave of depression I was getting nearly every month at the end of my periods, the last two (three?) have gone great. Woohoo for emotional stability! I'm so relieved not to be afraid of myself anymore.

My head is not great lately. I always think that winter is easier on me because I don't have to worry about the heat, but the weather changes are frequent this year - thanks el nino - and I'm finding myself planted in my chair far more often than I'd like. The nausea is back, and it's brought body aches with it. I feel like I've got weights attached to my limbs, and I'm sleeping a bit more than I feel is normal for me.

My IC continues to stay under control, I haven't had any pain at all and my usual frequency and urgency remain usual. I am still following my IC protocol, but not nearly as strictly as I was when I was healing. I don't avoid anything entirely but eat only very infrequent, small portions of ingredients that I know flare me, like onion or citrus.

Oops, running out of steam. Is this a complete post? It is if I say it is, so it is.


Monday, January 11, 2016

On the Eve of my 37th Birthday

I'm recycling the title from last year's bday post because I liked it so much.

I'm ready for 37. Bring it on. 36 was hard, my mental health was a mess, I felt more alone than I can ever remember feeling, and I didn't know for sure that I'd come out of it alive. But here I am, another year older, another year wise-assier.

I'm not in a much different place than I was a year ago; I'm still studying spanish, I still live in a wee house in a big-tree forest and still have two dogs, a man, and a whopping case of the migraines. But this year I took some control back. I started it off by beating my IC into remission (if there is such a thing) and now I have pain extremely rarely, and it wouldn't even be worth mentioning if I wasn't specifically mentioning it. That gave me some confidence, so I started doing more research and following my own instincts, outside of my doctor's limited recommendations. I began using essential oils, vitamins, herbs, and supplements for my health issues and while I haven't found anything for my migraines, I've developed a routine that has helped my emotional state, my immune system, and my skin. With the promise of better access to mental health care in the coming year, things can only improve, at least on that front.

The migraines remain. At least they're consistent. I've had some really good days though! A few really terrible ones, lots of mostly awful and frustrating ones, and not a few where I just kept going, despite what I felt, because sitting still was making me feel like a slow-growing mold that had started to rot. The other day I was walking in circles picking up clutter and putting away stray hair clips because I simply couldn't sit down. Despite not being able to think or really even see, I was still compelled to keep moving, keep sorting, keep doing, until I began stumbling into furniture and finally laid down, and almost immediately fell asleep. So, no improvements physically, and none expected in the year to come, but never say never, because nothing is certain.

I'm made some strides in setting boundaries for myself and my health, and I've stuck to them. This is something I'm starting to really like about myself. Some might see it as being rigid or unkind, but I have to protect myself at least as much as I would protect a friend. No one would fault me for protecting a friend.

I am getting some baaaad baby fever. I'm still not in a great place financially to have a kid, and I'm unsure what it would do to my health and certainly doubt my ability to care for a baby with a constant migraine, but my heart aches.

Tomorrow, I plan to spend the day with my mom, who is dealing with some significant health issues. She and I have always been close, and sharing a birthday has always felt special, but this year is harder for her, and I'm glad we're going to be able to be together. I'm tempted to never leave her side again.

It's a beautiful, complicated, sad, joyful, hilarious, ridiculous, painful, demanding, interesting, fabulous life. And I'm here.


Wednesday, December 30, 2015

Year: in Review/Incoming

Goals for 2016:

-Write a short story, and submit it somewhere
-finish beginner spanish, continue to learn at least 5x week
-continue to exercise
-find inner peace, nbd

2015 was rough on me, and I couldn't think of a thing I'd accomplished in the year, until I looked back on what I recorded here. I kicked ass this year, even though this year kind of kicked my ass. It was a mutual ass kicking.

Things that happened in 2015:

I've successfully managed my IC through diet for a year. I don't know if I'm in remission, because I do experience pain if I get daring and eat something too spicy, or forget to pick the onions out of a dish, but it doesn't last long because I go back to eating safely.

I wrote more this year. I worked on a few short stories - though I don't know if any of them will ever be finished - and wrote a bunch about food.

I reevaluated my social media usage, unfollowed people that don't make me happy, and joined some groups and apps that do.

I started last year thinking about having kids, and that ache has only grown. I'm no closer to an answer to that question, unfortunately.

I broadened my supplement intake, and opened my mind a bit more to the woo, including acupuncture and essential oils.

I had a tiny, rather unsuccessful vegetable garden and my first flower garden ever. And I am already thinking about what to plant next year because I am a masochist.

I got to work for a dog sitter! This was an incredible amount of fun and I hope this gig continues into 2016, even if only infrequently.

I've been more honest with myself and others about my mental health. It's not great, Bob.

I've continued exercising, and even started jogging! It still baffles me.

So, I am moving forward, things are happening, even if they aren't happening at the pace I would choose.

Happy new year, friends. See you in 2016.


Monday, December 21, 2015

Current Events

I'm getting ready for xmas, which will be spent with just my immediate family.

I've managed to buy some presents, and I'm already half packed for the overnighter we're spending at my parents, but I think the truffles we were thinking of making are not going to happen because I'm already consciously keeping reserves of my energy.

I joined a facebook group for chronic migraineurs, and it's helped me feel a little more connected to the world lately. They're talking a lot about this daith piercing trend that's happening. I don't have a great track record with piercings, they take forever to heal, but I'm interested in hearing others' experiences with it. It sounded like bunk to me, especially because the daith doesn't line up with any acupuncture points for migraine, but some people are seeing positive effects so I can't help but be curious.

I haven't seen any changes in my migraines since starting the vitamin E regimen, so I won't be buying more when the bottle runs out. The St. John's Wort may have made a difference however, I found my depression to be a little easier to ride out this month, but I still felt really anxious, maybe even more anxious than I was before? I dealt with it ok, but still, it was not my favorite.

I'm having a bit of an emotional crisis over having biological children. I always thought I'd get to it, but my health, money, having a relationship, home life and financial situation that feels stable enough to bring a child into it; it's never felt right, and now I'm faced with a bit of a now or never choice. I can always adopt in the future, and that's something I'd like to do, but I can't help but feel turmoil over this choice to either possibly lose my chance to give birth or to dive into the deep end and have a child now. I need to see my dr after the new year, and all I can do is hope that she'll have another option for me.


Thursday, November 26, 2015

Thanksgiving Realities

The older I get, the more cynical I get about Thanksgiving. The origins of the holiday are total bull, and there are so many people going hungry in this country (in the world) that spending a day stuffing my face in the name of community and gratitude feels a tad hypocritical. And then there's the migraines, so it's not like I'm rushing to the family table where everyone is in their finest and wearing perfume up the whazoo.

Anyway. Today will be spent at home, kind of a normal day save for the menu I'm aiming to cook, if we can get all the food - we have no potatoes at the moment, and if I don't get my mashed tapaytas and mushroom gravy I'll be bummed - and if I can even manage cooking it.

I've still been extraordinarily tired lately, even with supplements and being able to hike again most mornings. Today will be a day for slow and steady progress.

So, if this all works out, it'll be mash and gravy, green beans, a really simple apple, almond, and sweet potato dressing, and maybe some lentil loaf bites.

Tomorrow, we're heading to my parents' house for "leftovers", though knowing my step-dad he may just make a whole new meal.

And I'll just leave this here, because it was informational, funny, and we should all know the truth about our history.


Friday, November 13, 2015

Coming Back

Ok, I seem to be regaining my balance for the moment, so let's stop to catch up, shall we?

I did, indeed, cut my hours at the dog sitters', and after the initial upset I felt at losing something that felt important to me (a sort-of livelihood, people counting on me, awesome dog interaction all the time), I am realizing that I am slowly regaining the energy to do things around the house, and I went on my first hike in two weeks this morning.

I'm really excited about some wool socks I made on a whim yesterday, too. I haven't sewn in ages beyond basic repairs and was feeling super down about my ability, but then I was inspired to demolish an old wool sweater and turn it into the warmest socks I've ever had on my feet. They look completely wonky, as if I perhaps made them with one eye closed and a hand tied behind my back, but they fit and are comfortable and did I mention warm? Warm.

My head continues to torture me every day, and it's been particularly sensitive the past few weeks, I'm guessing due to the weather finally changing. I'm nauseated a lot, but since I haven't been in a car in a while, it's staying under control with minimal ginger. Those anti-nausea pills were a miracle for a while there, but now I'm kind of afraid to take them, since I only recently got my pooper running regularly again. I did get some fiber powder to use in conjunction with it, but I'm still not rushing for it unless I have to. Next car ride, probably.

The IC is still here. I've read anecdotes of people having full remissions but I don't see that happening for me anytime soon. I'm not in an active flare, and I can currently get away with eating very modest amounts of acidic foods and spices, but there are some things that still trigger pain, like onions, caffeine, or tight pants. I can't complain about it though, considering how ridiculously restricted my diet was this time last year, and oh boo hoo I have to wear stretchy pants for the rest of my life, what ever will I do with all this comfort?

Though, it's funny navigating life as a person who doesn't drink alcohol or caffeine, other people's addictions become very apparent very quickly as they loudly proclaim their inability to EVER go without [drug of choice] and how it's the only reason they get through [minorly unpleasant life experience]. Actually, meat eaters do this with me too, but not smokers, interestingly. I think smoking has just enough stigma now that peer pressure isn't cool anymore. I'm still a jerk (apparently) for telling people not to smoke around me, but they are also a jerk for spreading their toxic clouds of cancer all over, so it's less awkward I think. For me, at least, haha.

And I've joined a forum or two to try and forge more connections in this world. I've been too isolated, so I've got to make social interaction part of my self-care routine, whether my introverted self likes it or not.


Tuesday, November 10, 2015

Some Choices Suck

I had to reduce my already measly hours at the dog sitter's and i'm devastated over it.

This feels nothing like when I left my job when I first got sick; that was more like a reclaiming of my life, as if I was taking myself back from the job. But this... I love being with the dogs, and telling the owners that I couldn't be there for them like I'd been trying to feels like a step away from life. I feel like I've lost everything that made me likeable and now I'm just the migraine.

I just feel really lost and sad. That's all.


Wednesday, November 4, 2015

Supplements and Deep Thoughts

So, I'm taking a bunch of supplements now.

I've been taking Vitamin D and iron for a while, and when I had a bout of constipation I started taking magnesium. I've made a few more additions to the pill pile and now my nightstand looks comically full of bottles. There were a few things that spurred this latest purchase and I'm not terribly pleased to admit that unsolicited advice was one of them.

A man I was meeting in a casual/professional setting conversationally asked why we'd moved to our current residence several years ago and I answered I had chronic migraines and couldn't live in the city anymore. This was the most succinct I'd ever been in response to a question like this so I was feeling pretty good until he replied, "I had chronic migraines and cured them with vitamin E." My face went into awkward smile mode and I managed a, "Interesting," and let it hang in the air. The subject changed naturally after a few beats and I left the interaction pleased that I managed not to be too weird.

Anyway, I'm not going to dismiss his suggestion just because it was ill-timed, and I knew I remembered something about vitamin E, so I googled it and the first few results told me that a study had shown that people with hormonally triggered migraines had seen benefit from a moderate daily dose of E. It's not too pricey, so I got a bottle. Also, my hands have been hurting lately, and my back hurts every day, so I'm trying out a glucosamine, msm, cmo blend that is meant to be a veg version of glucosamine chondroitin. And I'm finally giving st john's wort a solid try because I've been struggling with depression off and on for years now, but still can't see a shrink because poor people don't get mental health care unless they are institutionalized or drug addicted. While I was at it I got some vitamin C because cold and flu season is officially here - CA had its first death of the year today.

I'm just a harbinger of doom today, aren't I? Life's a struggle, then we die. I'm not feeling particularly down at the moment, but life in general is feeling pretty heavy and I don't want to pretend it's easier or prettier than it is. I've been thinking about this girl who was doing the insta model thing for thousands of dollars a post and suddenly quit and came out with all this honesty about body image and advertising and how she realizes now that synthetic representations of life aren't doing anyone any good, least of all herself. And then I told my bf earlier, "We're the most messed up animals on the planet because we're cursed with all this self awareness. It's painful and terrible that we should know our place in the universe and be so helpless and futile, our condition reduces us to violent, self-serving babies. But humor balances it out, doesn't it? That we can laugh at our pain, and turn the horrors of living and dying into something we can not only appreciate as a commonality that creates and destroys us all, but something we find humor in, gives us strength and a sort of power. At least, it gives us power over our own emotions and reactions, which is all we can hope for sometimes.

Someone close to me got a bad diagnosis, so I'm having a lot of feelings right now I guess. Send me and mine good thoughts if you've got any to spare.


Monday, October 12, 2015

The Whims of Doctors

I'm slogging along rather steadily, I think.

I had a dream the other night that I thought was kind of funny when I woke. In the dream I'd painted my nails perfectly, then ruined them. Then I cleaned the kitchen spotlessly, only to find it covered in flour and garbage when I looked back. This is clearly a dream about futility and feeling like I never really get anywhere, but when I woke up, my nails were perfectly painted and my kitchen was pretty darn clean, so it actually made me feel kind of good about myself, instead of anxious or frustrated like one would imagine.

I had some visitors last week, and I am only now recovering, but it was wonderful to see the youngest member of my family (a 2 month old baby girl) and the oldest (my 77 year old grandfather), and a few others whose ages are utterly unremarkable but with whom it was still a pleasure to visit.

The summer heat is waning, we'll have a few more very warm days, but my head is definitely feeling the ease in the intensity of the weather. Not that I'm much more active, but at least my head's not throbbing like a stubbed toe half the day. That kind of pain is exhausting.

I have a health related anecdote of a slightly different nature today, because it's not about me. My boyfriend has chronic back and neck problems. He's had surgeries, shots, adjustments, massages, and he manages the pain with narcotics. The pills aren't great for the body, but being totally sedentary and depressed is worse, so he takes them and gets regular blood tests to keep an eye on how the drugs are affecting his liver, kidneys, etc. He's had a history of doctors giving him a hard time and putting him on "pain contracts" (which is a srsly fucked up name, like we have any control over our pain, it should be called a pill contract, or a "my quality of life is subject to the whims of my doctors" contract). They've accused him of lying and selling his pills, they've cut him off cold turkey, subjected him to endless pee tests, and of course, there's the numbing repetition of having to justify himself to yet another new doctor, or worse, the same doctor at nearly every visit.

It's amazing, however, how little hassle he gets when I come with him to appointments. I sit quietly, only speak up rarely, and am usually half checked-out with my phone or some crochet, but the appointments go faster, he gets less questioning, and I have never, EVER witnessed him being denied drugs for pain. Literally, I accompanied him on his last visit for refills and it was ten minutes and a blood test. The only reason I came with him is because on the one previous, which I did not attend, he was threatened (with withdrawal of care and meds), harassed, and denied his medication for a week.

I don't understand why my presence makes a difference. Sure, I'm a witness to his pain, a second voice to support his; and I suppose I'm also a witness to what happens in the room, an unaffected party whose word might be more weighty in matters of medical negligence. Of course, I could just as easily be his accomplice in the pill scamming trade (I'm not), but maybe I've just got one of those trustworthy faces.

And what's worse, if it's this hard for a nearly 40 year old white dude to get medical care for chronic pain, I can't imagine the struggle people of color are dealing with. Our health care system sucks, you guys. Obamacare made it better, but it's still so lacking.


Tuesday, September 22, 2015

Update and a Good Decision

Getting back on the vitamin d supplement seems to have perked me up a bit, just enough to be frustrating as all get out when another late summer heat wave comes along and flattens me.

I'm still struggling, but it's gradually getting easier to reclaim my place in the world.

The heat though, ugh it's terrible. Here in the mountains of northern california the weather tends to be mild. Summer daytime temperatures hover between 75 and 90 on our side of the hill while winter daytime temperatures average between 60 and 75. That's not a huge difference, and the changing of the seasons is actually pretty easy on me; because it's slow and gentle my body usually has plenty of time to acclimate before the severe weather comes out. But there isn't enough acclimation in the world to save me on a 90+ degree day and when temperatures get over 100, I can't do a thing but distract myself and wait for sleep.

I am so looking forward to winter, and I can't stop wishing I lived more north, in a colder climate. I worry about dealing with more frequent and severe storms, but what if my daily life was more functional without a hot summer to steal at least 1/4 of every year from me? Dealing with more weather migraines might just be worth it then.

Let's do a symptom round up:

I've got daily nausea going on, but my doc gave me some awesome melt-away pills that really help, and in combination with ginger and that acupuncture point on the inside of the wrist, I'm fairly comfortable.

My head's been pretty good in the mornings, despite the persistent heat-hangover I'm waking with. I've mostly been able to keep up on walks with the pups, which always improves my mood by 99%.

Unfortunately, I'm not getting a whole lot more done than that lately. Bending has been a major trigger, making housework very difficult. I actually paid someone to come help me clean, for the first time in my life, and it was the best decision ever. I needed that money, but I needed my sanity more, so it was a worthy expenditure, even if it does cut into the already tight budget. Ugh, money is the worst.

My back and neck are persistently achy and stiff. My eyeballs are aching right now, but I've been having random stabbing all around my head, more so towards the end of the day. I've still got that twitch. I've been very snappy and that reminds me I need to apologize to my boyfriend.

I'm still very sensitive to loud or grating noise, flashing or bright lights, and strong or chemical smells. I can't stand to be touched on my bed days, which are too often lately.

I've only hit a 10 in pain probably once every three months, maybe less. I end most days at about a 7, though it flows and ebbs and if I'm very, very quiet I can sometimes keep it down to a 3.

Not bad, for summer. I'm so lucky I live in the quiet of the forest, I owe everything I'm able to do to the trees. Redwoods are magic.