Tuesday, December 28, 2010

2010

Now that Christmas is officially over, and I'm safely back home with my icepack and chamomile within easy reach, bundled up under blankets and basking in the glow of my desktop monitor, I feel like reflecting.

The Three Day Christmas Extravanganza had some really great moments, some mediocre moments and only a handful of terrible moments. I only had to beg off for two of the five gatherings I was expected to attend, which I consider a success. My homemade gifts were well received, and they were pumpkin gingerbread muffins, banana muffins, and crocheted plastic bags. I have a few ideas of how I'll do things differently next year, but mostly I had a good time. I ate well, but in moderation. I medicated as needed, but far less than I had worried might be necessary. And I got to see my family, which was the most important part.

And it was a pretty good year, overall. I think that this was the year that I really discovered food. I started cooking from scratch a lot more and have made a point of incorporating ingredients that I have never used before. For example, I've now cracked a coconut, roasted brussel sprouts, carved a pineapple, made seitan from flour, made hummus, baked bread, perfected stir-fry, and ate a whole lot more raw. I also learned how to cut my own hair, how to use my sewing machine, and I relearned how to ride a bike!

On the medical front, I got Botox, and then a new primary care doctor. I tried antidepressants for about a minute, and a few alternative treatments (one very alternative), most of which didn't help, but there was the resounding success of a temporary high dose of vitamin D, which gave me back a serious amount of daily spoons.

Blogwise, I started replying to comments more consistently and I think my writing has improved, though I have no proof of this.

Goals for the coming year: maybe finally getting acupuncture, that'd be great. I'm going to continue to make learning new things a priority, challenging my mind and body is so important for my health. I'm going to continue to reach out to others on the internet; the connections I've made have been so helpful, so supportive, so interesting, and so validating, that I can firmly say that positive social interaction (within whatever limits one may have) is some fantastic medicine.

Recently someone told me that they didn't know how I faced each day. I agreed that life is hard, and with chronic pain it can seem hopeless. But it's not, is the thing. My daily migraine pain and associated symptoms bring me down, all the way down, flat on the ground and barely breathing sometimes, but as soon as I am able, I get back up.


I wish you all a happy 2011! I can't wait to see what happens next.

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Thursday, December 23, 2010

FUUUUUU- ...dge.

I recently wrote about disability, and ended the post thinking that being disabled has probably made me a better person. Pain, on the other hand, has brought out my dark side.

Pain has taught me pessimism and paranoia, I'm always looking for the next trigger or preparing for the next big migraine takedown. It's made me fearful, and every new ache and pain now has the potential to last forever. I had a crick in my neck last month and it was terrifying. Part of me knew it was just a crick, it'd clear up on its own in a week, on the outside. But there was a little voice telling me that my head had started hurting in a similar way. It began like an oddly persistent headache. At first. That little voice pipes up way too often.

Pain has twisted my once cheerful, easygoing personality into one that is sometimes dour, sometimes angry, and sometimes depressed. I've had suicidal thoughts. I've been mean to my boyfriend. This part of me is shameful, embarrassing, and horrifying. I want to like people, and be liked in return. I don't want to destroy my relationships, and I want to have a happy life. But it can be a constant struggle against the pain.

On the lighter side, pain tends to increase my profanity usage. Not that my language is squeaky clean when I'm pain free, but I do have a modicum of control. Unfortunately, when I'm under stress, the curses come flying forth despite time, place, or company. I'm sure a lot of people experience this, the occasional expletive when injured or unpleasantly surprised. But with the chronic pain, can come a chronic potty mouth.

But lo, I can defend my salty tongue with science! I've read about how profanity, and vocalizations in general, can be soothing to those in pain, whether emotional or physical. Like while birthing or grieving. So, see? It's not just me.

I've been working on it, and I'd say I've gotten myself about 75% PG rated. Sometimes, I start to slip, and try to catch myself with a so-graceful "fuuuuuuuu- ...dge" or "son of a monkey". I don't normally condone those types of watered down profanities, I feel like if you are going to pretend-swear, just fucking swear, okay? Everyone knows what you mean. But, at those times when I'm already halfway into a really good curse and I suddenly realize I am about to be extremely inappropriate, a panicky "mothercracker" is completely understandable. I do allow myself the freedom of totally unrestrained speech, but I try to keep it in my own home. It's just me, the man, and the dog. No one is offended here.

And because I can't resist pointing out the silver lining, there are a few good things pain has given me. Meditation for one thing, and an appreciation of quiet. Empathy. My pain is giving me experience, and it's added another layer or two to my personality, for better or worse. I can't help but appreciate the entirely different life experience I am having because of chronic migraines. I had no idea this world existed until I was submerged in it. That's the naivete of the healthy, I suppose.

Before pain, I'd always wanted to write. I've been writing, in some form, since I could read. I'm the proud author of scads of mostly bad poetry, a few short stories, a big emotional vomit of a terrible book, and a scattered, ridiculous livejournal that had all left me thinking I was proficient, but maybe not too talented. It wasn't until I couldn't do anything else that I finally found a voice.



"There is no coming to consciousness without pain."

Carl Jung



"Pain is no evil unless it conquers us."

George Eliot



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Thursday, December 16, 2010

Depression, Ibuprofen and Online Captions

It's been a slow week at chez steph, due to a three day stint with some serious depression that I'm pretty sure was caused by ibuprofen. Really.

I've been dabbling in depression since the migraines took over, but have thus far been able to avoid being depressed depressed. I can get out of bed in the morning and go for walks and try to make myself better on sad days with endorphins and whatnot and that usually works well enough. But for those three days last week, I just couldn't. Do. Anything. All I could do was cry and cry and zone out on the internet and happy puppy pictures. I was getting really scared that this might be the way I am now, when it suddenly lifted. I'm back to dabbling, and the only thing I can think of that might have triggered it is that I took ibuprofen, two days in a row. So weird.


Wordpress is doing this adorable holiday thing where all of their blogs have snow falling over the text. It's so festive and charming and MAKES ME FEEL LIKE PUKING ON MY SHOES. Please, wordpress, knock it off.

While I'm griping about the internet, I've got a bone to pick with online tv. Reliable captions are few and far between. Hulu is the best of them, but my estimate is that they caption 25%, or less, of their content. They blame it on their providers, and the networks blame... somebody else... I don't know. All I know, is that I've stopped watching a lot of shows that I like because I can not find them with captions. For example, any Syfy show. I've written emails to all the networks requesting that they make their content accessible to everyone. But they don't even respond most of the time. It's rather depressing. Youtube started this intuitive captioning thing for some of their videos, but it's pretty consistently terrible. This Safety Haiku is very similar to my own experience. It comes out nonsensical, totally unhelpful, and rather nauseating.

However, the recently passed Communications and Accessibility Act of 2010 aims to make the internet friendlier to those for whom audio is a problem. Within a year or two, all content previously aired on regular television will be mandated to have captioning available online as well. This still doesn't apply to user generated content, or even web series, since they wouldn't have "aired", but I do have high hopes for the auto-captioning services. Technology changes too fast for them to remain unusable for long.

And one more internet gripe: I am unofficially boycotting any websites with music or audio that starts automatically, whether it's in blogs or ads. I try to keep my volume muted, but I forget, and lately I've been smacked by unwanted noise enough times that I've just started deleting them all from my bookmarks and reader. I don't have the spoons for these assaults.


Link of the Day: Care at home is a civil right - As a disabled person who is reliant on others for daily needs, this article really resonated with me.

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Saturday, December 11, 2010

Bouncing Back

Migraines knock me down nearly every day, but I keep getting back up. Because even if I stay down, even if I stop trying, I'm still going to get hit.

I thought about this when I fell off my bike recently, how I barely even checked my (minor) wounds, just got back on the bike and kept moving. What's dwelling on the pain going to do? I could cry, and I did cry a little as I rode away. But my tears dried quickly in the wind and though those bruises bloomed nicely, I enjoyed the rest of the ride still unafraid, without worry of another fall. Because a fearful bike ride is an unhappy bike ride. A fearful life... same rule.

Unfortunately, my migraines hurt more than those bruises and I tend to fall hard, every day, so I don't get down on myself for feeling a little gun shy after a particularly rough neurological shit storm. It's okay to feel fear, it's what keeps us from flinging ourselves off of buildings, and it's what reminds me to bring sunglasses and earplugs and a hat and a bajillion other little things I have stashed in my big ol' bag that I take with me everywhere I go. Fear is an essential emotion. But an important part of bouncing back is getting over the fear of constant triggers.

I remember the very first episode of Lost (I still haven't seen the last season!), Jack tells Kate that when he felt really afraid, when he was paralyzingly terrified, he'd give himself five seconds to freak the hell out. Then he would bootstrap up and deal with the scary thing, be it a botched surgery, a smoke monster, or a migraine. He didn't say the last one, but this really resonated with me.

I try to allow myself the time to deal with things things that scare me. (But more than five seconds, thanks Jack.) I write it out here or find someone I trust to talk to. Sharing pain with people who understand is empowering. Facing pain is easier when I know I'm not alone.

So, I continue to get back on both the literal and figurative bikes. I'll pedal slowly and probably wobble and veer a bit. I might fall, but I'll get back up. I will always get back up.


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Sunday, December 5, 2010

The Practical Usage of Pot

Marijuana: It's not perfect. But it's the best painkiller I've tried yet.

I've tried using it in various ways. Eating it in brownies, cookies, butter, and candy tasted good but never had a noticeable affect on my pain. Vaporizing it wasn't as effective and was a huge to-do with machines and balloons and nonsense. Applying it in lotion form may have helped with some muscle tension but I wouldn't swear to it. And taking an "extract" in a pill possibly made me hyper for twenty minutes, an hour after I took it. That's not particularly helpful. I've also tried some derivatives of the cannabis plant, such as hash, which actually triggered some head pain, and keef, which I currently use in addition to substandard grades of marijuana, when I can't afford the better stuff.

Through trial and error, I've found that the best way for me to use marijuana is by very unoriginally smoking it. I most frequently use a small pipe that folds in on itself to cover the bowl, and any ash or embers, when it's not in use. When closed, it's smaller than my thumb, so it's easy to carry discreetly, and it comes apart with a screwdriver for a mostly painless cleaning process.

Marijuana doesn't totally eliminate pain, but it does reduce it, changes it, and makes the pain somehow more dealable. With marijuana, I've gone from a suicidal 10 on the pain scale to a relieved 8. Or a non-functioning 8 to a slow-moving, yet productive 6. Or an irritable 7 to a cheerful 4. After that it's just gravy.

But pot is not without its side effects. Sometimes I'll seem "high", (talking a lot, being sillier than usual, the giggles), but it's only at first, if at all, and mostly I feel normal on it. It makes me a little stupid sometimes, but usually I think better on it because my migraine isn't overwhelming every synapse. If I've been smoking frequently, I can get coughy, so if my head pain is outrunning my lung capacity, I will put down the pipe without hesitation. I've had bronchitis and it's really not fun.

Sometimes I can feel the muscles tensing in my scalp more after smoking pot (this happens more often with indica strains, so I try to stick with sativas), but it has never triggered a migraine. However, coughing has, so again, I try to be gentle with my lungs. Pot doesn't give me rebound headaches, but if I've been smoking frequently, a day off can feel sluggish. And that's it. Marijuana has less side effects, for me, than pretty much every pill I've tried. It's like nature made it just for me. And then people stumbled onto it and cross-bred it for thousands of years into its current migraine pain fighting potency. Teamwork!

My boyfriend likes to tell me about canniboids and why marijuana works for me, but it goes in one ear and out the other, so I don't have any of that information for you. Though I did do some cursory googling and discovered that Wiki looked pretty darn thorough. Though it is still wiki, so grain of salt, y'all.

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Monday, November 29, 2010

Warm Berry Pie In My Comfies and Other Happy Things

There was a cat intermittently yowling under my house for about a day, which no one else could hear at first, so I became convinced it was a new migraine symptom, because WHY NOT. But when we got home from Turkeyfest 2010, my boyfriend heard it too, so he found the cat and chased it out. Hooray for not hallucinating. Again.


Thanksgiving sum up: perfumed people, loud talkers, rich and heavy foods, medicate, play wii, medicate, converse politely, medicate, smile, my hair looked great, butternut squash soup a la mon petit frere, bright lights, I hate blue cheese A LOT, I stood up for myself, medicated some more, had a good time, biked home and ate some warm berry pie in my comfies.


I found out that I helped a relative accept a medical condition that it seems we share, and now, hopefully, she'll get better treatment. I am overjoyed for her and SO pleased with myself. I don't care if that makes me selfish, my modus operandi of late has been to grab onto the little things and squeeze every drop of happy out of them. Luckily, someone I love getting appropriate medical care gives me quite a bit of happy, so this should sustain me for a bit. At least a week.


I finished my holiday shopping, just a few gifts off amazon (thanks survey points!) which are en route to me as we speak. Holiday cheer is looming ever closer.

I'll be focusing on the handmade gifts from now until christmas. I've got crocheting and cooking and hopefully some fabric dyeing and sewing, too. But I'm not going to push it, if I start feeling too overwhelmed. I'm making gifts for the fun of it, not to stress myself out.


I keep forgetting to link to the blog carnival I participated in over at Somebody Heal Me, and now I've submitted to another one, over at Chronicbabe! I love participating in these, feeling a part of something is really nice. And there are always plenty of good reads, so go check them out!


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Saturday, November 27, 2010

Homeopathy Again

Quite a while back, I tried a homeopathic product called Banjo.

Dr. Steve's Banjo is "nine herbal extracts in the form of a big lozenge that you let dissolve in your mouth". It's meant to reduce inflammation, which Dr. Steve was sure I had. (He has since been proven right.) To me, it tastes like a lovely blend of ginger and lemon: a little tart, a little bitter, and a little sweet.

I've got to admit, it felt pretty cool getting usage advice from the guy whose name is on the label. If Orville Redenbacher called you up with some popcorning tips, you'd listen up, right? I did, and Dr. Steve was very helpful. We checked in every few weeks to see if I had noticed any improvements or changes. He had me change my dosing style a few times and continued to send me Banjo, even though it wasn't immediately successful. (Note: Dr. Steve is not my doctor. He's a very nice man who sent me homeopathic lozenges. In emails, I called him plain Steve. We were cool like that.)

A few weeks into the experiment, I went into one of my nauseous phases. With chronic migraines, I almost always have some lingering aura, head pain or no. The nature of the aura changes over time; sometimes my peripheral vision will be haunted by sparklies off and on for three days, or I'll smell poo randomly for weeks straight. Well, this time is was the nausea, and it hit me for over a month. It was non-stop, unless I was eating, or sucking on a Banjo. (I am probably not wanting the traffic that phrase will bring me.)

Despite my sizable intake during that time of vague pukiness, Banjo never did change the frequency, intensity or nature of my migraines. And while it was very useful for the nausea, I do have other options that work just as well for me. At the end of our trial, I declined to continue to use Banjo.

It took me a long time to write about this experience. I think that's partially because I felt guilty that it didn't help me, as I do with every failed treatment. Also, I really didn't want to write a "bad" review. I struggled with this way more than was necessary. Then, I realized that just because a product didn't work for me doesn't mean it's a bad product (the opposite is true, as well: if it had worked for me, that doesn't automatically make it a good product), and it doesn't mean that I am negative or mean or ruining someone's business just because I say it out loud. I'm not that important. Sometimes I forget, you guys.

ANYWAY, if you are interested in learning more about Banjo, click on over to the website and check it out. Dr. Steve is currently focusing his trials on those with osteoarthritis, so if you are a sufferer and would like to try Banjo, there's a screening survey here. If you have migraines or fibromyalgia and would like to give Banjo a try, you can reach Dr. Steve through the website link, or you can email me and I'll pass on your info.


Full disclosure, I tried Banjo for several months at no cost to me.

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Sunday, November 21, 2010

I Have Exactly Five Things To Say

1. I seem to remember the cold being friendlier. My head really doesn't appreciate all the shivering.

2. I made a sort of fried bean patty dish the other day and as far as pull-it-out-of-my-ass-improvisations go, this one was a rousing success. I enjoy cooking.

3. Sewing has been incredible. My mom gave me a wonderfully soft pullover sweater that was NOT. FLATTERING. on either of us, so I cut it down the middle and did some minor stitching to make another cozy cardigan. (In case you are keeping track at home, the score is Ugly Sweaters: 0, steph: 2) I really love making useful things out of other, less useful things, thus making them useful again. It does not escape me that this is also making me feel useful. So, it's a little like therapy, but I get clothes out of it. Bonus!

4. I walked to the farmer's market this morning with my dog. The boyfriend was sleeping, so I went solo. It was a cloudy, dreary walk. I got a few veggies and on the walk back home it rained a little. Glorious. I love days like this, despite all the little aches and pains that crop up in response to the chilly damp. I'm looking at you, left hip.

Walking in the rain in the city is a singular experience. The metallic smell, rainbow oil slicks on the asphalt, and how it's both louder and quieter, with the low storm clouds echoing every passing car and making distant sirens sound like rhythmic ghostly wails. And airplanes, unseen in the gloom, roar overhead, and their invisible engines make the very air vibrate. The rain comes down harder, reminds me of applause. I smile at my pretend audience, laugh at myself, then again when my voice is taken totally by the rain. It always surprises me.

Yep, I'm that woman standing on the sidewalk in the rain, laughing to herself as her dog takes a crap. Don't worry, I'll pick it up.

5. I've had a string of good days, followed by bad nights. I think it's because I'm waking up very early lately. I've got an icepack on now. My head feels heavy and my eyes are sore. Tomorrow I need to get a good workout, the treadmill or the bike. Maybe that'll break this pattern. Exercise usually changes something, for better or worse.


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Wednesday, November 17, 2010

Being Disabled

In googling for people like me I've come across a lot of great blogs about disability. How people with disabilities (PWDs) are treated, how they live, how they work through the system and how they live their lives without the ease that temporarily-able-bodied people (TABs) have.

I took that ease for granted. I never thought about accessibility. Why would I? I have had very few people in my life who had a chronic illness or a disability, so I had never even considered the perspective. That would be my privilege showing, I suppose. Now I know.

Now I know that the reason PWDs have to sue for access is because usually, no one will fix it otherwise.

Now I know that disability is common and varied, and often invisible.

Now I know what it is to be shamed for having a disability, to feel guilt for it, to feel less than. And I know that it's not right.

Now I know that disabled benefits are really not enough to live on, despite the welfare queen myth.

Now I know what it's like to be hungry.

Now I know what it's like to be pitied, dismissed, marginalized, condescended to, ignored, disbelieved, and misunderstood.

Now I know what it is to be judged.

This knowledge makes me more aware, more sensitive to other marginalized groups, the constant struggle of this life on the other side of able-bodied privilege. Most of us turn a blind eye to it, because (society says) homeless people are lazy, chronic pain patients are all addicts, and people with disabilities who accomplish things are inspirational, and unless you have the life experience, you (I) might not be able to spot the heavy layer of prejudice that coats those phrases. You (I) might even assume that they are true, because a nicely dressed man on television tells you so, and the lady next to him with the doctorate and the cute shoes is nodding emphatically. But homeless people are not inherently lazy, pills do not default to addiction, and accomplished PWDs can be inspiring, sure, but let's not reduce people to Lifetime movies, shall we? (There's a whole bingo card phenomenon which is both hilarious and seriously disturbing.)

Becoming disabled by chronic migraines is one of the worst things that has happened in my life. But also, and I hate to say it for fear of feeding the cliche, it's made me a better person.

Now, the pain... that's had an altogether different affect on my personality. But that'll be another post.


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Tuesday, November 9, 2010

Project: Holidays

I'm still trying to find my groove with the holidays. I've gone through it thrice now, with migraines, and I'm still intimidated. It makes me feel whiny, how it all used to be so easy and how everything I want is so hard now and life is unfair and WAAAAAAAAHHHHHHHH.

Enough of that. That attitude never gets me anywhere, so I need a new one. I need to think of this as a challenge. I know my obstacles. I can't control everything, but I can prepare for anything.

1. People. They are loud, inquisitive, smelly and grabby. I will need to talk, deal with loud noises, perfumes and a lot of touching. Earplugs are standard, but are only so effective. From quietest to loudest, it goes: lion roaring, car backfiring, brass band, rocket launch, christmas at my uncle's house. I can try to tough it out with my strongest earplugs in, but this option can require some heavy medicating.

The perfume issue is even trickier, because there is no sticking it out. There is no medication I have found yet that makes it possible for me to be near perfumes and be okay. But I was thinking that a light scarf dabbed with some menthol-type scent might help.

Of course, another option would be to send out an email ahead of time, asking everyone to go light on the perfumes and that music be kept off while I'm there. But that makes me feel a little anxious. See, if I write that email, I'm asking for special treatment, and I was once made to feel bad for that and I really haven't gotten over it. I feel like I should suck it up for the good of the peace. Just because my life has been turned totally upside-down doesn't mean I should ask anyone to alter their family christmas ambience. Writing this out, it seems obvious, I should address the issue head on. Be nice about it, but air my concerns and ask for help. But my chest is in an anxious vice just considering it and I am not even sure what I am afraid of. That I'll be disinvited? Not likely. But maybe that there will be some form of rejection, a reply that suggests I'm difficult, or worse... if we get to christmas and my requests are all ignored.

That just sent me into tears, so I guess that that's the problem? I'm worried that I'll ask for help, open myself, share my pain and that I will be disregarded as invalid and ignored. Because I know that my family and friends would never actively reject me, but they might passively? I need to give them more credit than that. PLUS, last year I got scented lotion and bath wash as a secret santa gift and it was AWKWARD. So, maybe I should send an email. Suggestions?

2. Food. This one shouldn't be too hard, as long as I plan ahead. There's usually a veggie platter wherever I go, and as long as I eat regular healthy food (read: at home) and only have polite bites of whatever holiday dish I probably don't care for anyway, I should be okay.

3. Events. The problem with christmas is that it won't be rescheduled. If I'm down, I miss it all. So, on christmas eve, if I can walk and smile, I'll be at dinner. There is an upside to everything being planned out: it's easier to plan my recuperation. If I have three days of festivities, I need to know when they are over. I can rarely do "one more quick visit", or "let's just pop over for a while". I can't shift gears very quickly and a change of plans can drastically alter how I need to be budgeting my spoons. Like a car in traffic, is it easier to be behind a vehicle smaller than yours? Or a huge tractor trailer semi wide load? Of course, you'd choose the smaller vehicle, because without as much visibility you are more likely to slam on your brakes or encounter an unexpected hazard, which can result in some kind of migraine car crash meltdown head explosion. Visibility is key.

So, I'll be trying very hard to figure out my schedule ahead of time. But there's always something. And for that something, I'll prepare by knowing there's always something. I might groan and roll my eyes and have to medicate myself to numbness and may end up seriously incapacitated the next day. But at least I know that ahead of time, right? I can make sure I have everything I need for a speedy(ish) recuperation. I can warn my boyfriend that I will need extra help so the dishes don't start piling too high. And if a miracle occurs, and there is no something that comes up, well then, I'll just have extra spoons for hot cocoa on the couch or a late night christmas walk with the dog.

4. Presents. We've been too poor to do real presents for all fifty (plus or minus) friends and family since long before the migraines, so I've been making gifts for several years now. One year it was a set of canning jars, one filled with a bean soup mix and the other layered prettily with the dry ingredients for brownies. Another year I made a hundred thousand cookies and muffins. Another it was a $5 gift card for blockbuster, a bag of popcorn and some hot cocoa mix for a "family movie night".

I really enjoy giving these types of gifts. I try to make it inexpensive, but useful and different. It removes a lot of the baggage that can come with gift giving. One or two gift-givers I know can't restrain themselves from bragging about how much their gifts cost. I get to happily brag back about the hours I spent carefully filling jars just so, or how the whole kitchen was covered in flour! Haha! I win!

But the best part of making inexpensive, bulk gifts, is always having a few extras. Inevitably, someone unexpected will show up to a gift-exchanging gathering and will sit by awkwardly. They may be smiling at everyone opening their gifts from each other, but they noticeably having nothing in their own hands. I like to fill those sad, empty hands with baked goods. And even if I end up with leftovers, there are always neighbors, postal employees, homeless people and teenagers who will gladly take anything food-based off my hands. Or I can stash them away in my own freezer or cupboard. I'm no fool, I don't make a thing that I wouldn't eat myself.

Now, I really love making gifts for 50 people, but I don't love how exhausted it makes me. The last few years have been really hard, balancing the prep of christmas with the mandatory activities and VIPs being in town. I would collapse in pain for weeks when it was all over and when my birthday rolled around, on 1/12, I'd resent having to hurt myself all over again, being barely healed from the last onslaught. So this year, I've planned even further ahead. I've been gathering materials and making things since spring, and I am almost positive that I'll be able to do everything so far ahead of time that I will be well rested by the time christmas comes.

5. Staying well. I get sick nearly every winter. Usually it's just a cold but being knocked down with the flu when I already have chronic migraines... I can't describe the misery. So, I do my very best to take care of myself and minimize my exposure. Hand-washing is essential, as is never touching my face, nor allowing others to. (I have a few mouth-kissing relatives that I have to refuse regularly. Everyone laughs awkwardly and we hug instead.) I use my neti pot whenever my sinuses feel dry, or if I know I'll be in a germy situation and I frequently add supplements to my diet if I feel sick, or even at risk of getting sick. Echinacea, vitamin c and zinc, hot tea with lemon and honey and the spiciest soup I can stand with tons of chilis, ginger, garlic and onions are reputedly good for immunity. I am very careful about staying warm, and am funny about layers. My sort-of uniform is loose jeans (with tights underneath if it's cold enough) a light tank top, covered with a light sweater, which is then covered with a heavier coat, if the weather dips below 65. Plus, I always have my arm warmers, a scarf and maybe a hat in my bag. Staying warm is not only important to keep my body well, it's important to keep my head from exploding. Cold air in my sinuses, temperature changes from inside to out and again, and the involuntary muscle clenching that comes with shivering are all significant triggers for me. But as long as I have my layers, and add or remove clothing promptly, I've mostly got this one under control. I certainly prefer winter to summer, now. I can always add layers, but I can only go so naked.

So, that's the plan so far. There are definitely holes. Like, will the menthol scarf work? Will I end up sending that email? Will I get sick? Will I manage to do it all?


We'll see.

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Friday, November 5, 2010

Gratatouille

Being thankful isn't always easy, is it? Luckily, Diana Lee over at Somebody Heal Me is hosting the November 2010 Headache & Migraine Disease Blog Carnival, and the theme is: What are you thankful for despite living with migraine disease? So, let's all take a moment to reflect, shall we?

I have a supportive partner, loving parents, a funny and interesting circle of friends and family, a roof over my head and access to medical care. I have a sweet, smart dog, the internet, and socks on my feet. I can walk, I can think, I can read, and I can breathe.

Sometimes I get lost in how hard my life has become, so taking a moment to look around feels good. At this moment, my honey snores beside me, I have clean water and medication within reach. My neighbor is very generously providing my internet connection. I'm considering making some some hot tea, maybe that apple one that smells like cider.

I took a walk with the dog this morning and took some pictures that may or may not be any good. It doesn't really matter. Early morning walks start the day off so loverly.

This weekend my parents will need me to come over and water plants and feed the turtle. At that time, I am also welcome to eat their food and watch their premium cable. Sweet.

I've got a good life, even with the pain. That's what I'm thankful for.


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Tuesday, November 2, 2010

The Machines Have Already Taken Over

When a major appliance breaks down, I feel like I am helpless and lost in the wilderness. How will I cope? Will I even survive? Oh, the drama! Oh, the panic! I am lucky to have a mechanically inclined boyfriend. Every time something breaks, he fixes it. (knock on wood) He opens things up and makes a lot of noise with his tools and shows me parts of things and says technical words while holding it and pointing. All I really know is that he makes a mess and then puts it all back together and somehow it works again.

This was played out exactly with our washing machine this week. It was making a terrible noise, though it was continuing through the cycles, pretending everything was fine. Everything was certainly not fine. The last time we had a laundry-related breakdown, it was very difficult. Having a washer and dryer in my home means I can do laundry without having to feel well. I can load the washer, lay down, hang the wet clothes, lay down, load the washer, lay down, and so on, and manage to actually get stuff done without it wiping me out for days, like a trip to a laundromat does. Working, in-home laundry machines give me the freedom to use those spoons on other oft-neglected chores, or to spend time with loved ones, exercise, find inner peace, write something amazing or take a bike ride.

So, when the washer is threatening to break down, so am I. We've had to call for service before, when the problem was too complicated for us to solve with my boyfriend's ingenuity and my google-fu. It took weeks for it to get fixed that time. It was miserable. My parents live close enough to I was able to use their machines, but it was still quite the task, gathering, hauling, sorting, cleaning, being in someone else's house, repacking, more hauling, more sorting, and then lots of collapsing and whining. And then, hilariously, my boyfriend will find a secret stash of dirty socks and will FILL one of our huge hampers and suddenly I have more laundry to do and I think it may have been a survival skill for my man to learn to fix our appliances.

So, this time, he just dove right in there and pulled some weird bits of stuff out of the pump (I think) and now it's wonderful again, cleaning our clothes without a complaint.

Which brings me to the picture I drew for the occasion:


This picture is entitled My Boyfriend Fixed the Washer, Hooray. That's the boyfriend in the corner  there, all proud of himself with his tools. The washer is the smiling box. It is pleased that it will once again be able to fulfill its life mission without making horrible metal clanking noises. On the left there are the hampers full of dirty clothing and across the top, there is a clothesline of freshly washed items. I am in the center of the picture, grinning scarily, because I don't know how to draw enthusiasm without it being terrifying, and I am clicking my heels, as one does during moments of extreme joy. Nothing in the picture is to scale. I hope it doesn't give anyone nightmares. 

You're welcome, Jessica.


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Saturday, October 30, 2010

Saddest Face Ever. And a Picnic! Yay!


This has been an eventful week.

I woke up way too early this morning and am feeling all stiff and foggy and GRUMPY AS HELL. I'm supposed to have plans tonight, but the kitchen is trashed and I am so wiped from a 7.6 mile bike ride yesterday, that I really have no idea how I am going to do it all without melting down.

Speaking of melting down. That 7.6 mile bike ride was to our local Aid office to try again for food stamps. We were issued a card many months ago, but we only got to use it once before it was deactivated due to budget cuts. It was very sad. So, we went to the office and the worker said that we may not qualify for it after all but she is going to "look into it". It may or may not help that my boyfriend is trying to get all my medical expenses together as proof of broke-ness. We'll see how that goes. We opted to go ahead and take pictures and fingerprint while we were there, to save me another trip if nothing else. I had full earplugs in, a hat on, and was constantly guzzling water, so I was doing pretty good until they needed to take my picture and I had to remove my hat. As soon as it came off, and those fluorescent lights hit me in my weakest spot, I crumbled into tears. The woman tried to take the picture anyway and ended up with a pic of me making the saddest crying face ever.

I drew a really terrible picture to portray the saddest crying face ever. My hair is long and brown and sticking up wildly. It is labelled "hat hair". My eyes have stress lines drawn around them and so does my zig-zagged mouth. There are blue drops falling from my eyes and they are labelled "visible tears". Another label points at the head vaguely and says "Saddest face ever" In case it was unclear.

She gave me a minute to try to compose myself and I managed not to bawl through the next attempt but I didn't even look at the picture. It can't have been pretty but I could not have cared any less at that moment. So, then we went to a very close park and had a picnic with the lunch we'd packed. This gave me time to medicate and calm myself, drink more water and stretch the tension out of my body.  I took out the earplugs and relaxed. Decadent. I definitely needed the break before throwing myself back on a bicycle and back into traffic. It's like Frogger out there. But it's amazing what some down time will do for my head because after about an hour or just being quiet and focusing on the moment (trees! tuna salad!), I was ready to go. I must have done something right because the ride home was much easier than expected. But I'm still so tired I could fall over.

I made some glorious zucchini and sun-dried tomato enchiladas which you can read more about here.

I made a new internet friend. I do have a few real life people with whom I can discuss my health, and I love and appreciate them for supporting me as best they can, but very few have chronic pain, and even fewer have migraines. My new internet friend knows the chronic migraines well, and it's been really fantastic comparing stories and sharing ideas. I highly recommend it. It's like blog-reading, but more interactive.

And I am finally on an effective antibiotic for that stubborn UTI. It's still not gone, but it's finally improving.

My head? Nothing exciting. There's been pain, but it's been manageable with mindfulness, meditation, and meds. And ice, but that just ruined my nice alliteration.



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Tuesday, October 26, 2010

Meta

A few items about the blog.

About a hundred years ago, I got a couple blogger-endowed awards. A very belated thanks MigrainePuppet, Tallis, and Jessica. There's nothing better than mutual blog love. But I am once again going to ignore the rules and not make a list of people to pass it on to.

Sorry.

I tried a few times, but it was like picking a favorite song or movie. There are too many greats, and my favorites change with my mood. Also, I kept flashing back to being picked last for basketball, which broke my ten-tear-old heart and has made it extremely uncomfortable for me to ever express preference over one person or thing over another. (Like when I used to feel bad for Pepsi because I only drank Coke, so I used to buy a Pepsi every tenth time or so, to make them feel better. (Now I drink water. It's just easier.)) You can see how choosing favorite writers might be difficult for me. So, instead of stressing myself out, let me again direct you to my blogroll, down there on the right, which is chock-full of fabulous writings and interesting people. And a few weirdos.

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I love the idea of a business sending me free stuff to review it on my blog. How do people normally make this happen? Do the bloggers email companies asking for free stuff or do we wait for them to find us?

I actually did try something once, they found me in this case, and a product was sent to me to try for free with the idea that I would write about my positive experience. But the product didn't work for me and I didn't want to write a bad review, so I don't think I ever mentioned it. But I really do like free stuff. And having an opinion. So, there you go, Companies With Migraine Related Products To Sell, send me your products (at your expense, of course) and if I can't say anything nice I won't say anything at all.

What a pitch. Yep, the free samples will be lining up. Aaaaaany day now.

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Migraine blogging tip of the day: Since my brain went haywire, I've found it nearly impossible to sit down and write a coherent blog post from start to finish. (Haveyanoticed?) I get confused or distracted or tired before I manage to finish a thought. I've found it works better for me if I keep several pieces going at the same time. And then, whenever I feel like writing (like randomly for 3 hours at 4 am. Good morning!), I can flit around my drafts, editing, adding and deleting at whim, moving on to the next, starting a whole new post, or stopping writing mid-sentence without feeling like I left anything half-finished. Because everything is half finished! And sometimes I'll wrap up several posts at a time and save them up for the weeks when I can't string together two words. This somewhat scattered technique has served me well. Looking back, I've been pretty consistent with my posting, despite the rollercoaster ride of cognitive ups and downs I deal with daily.

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I posted some pictures over at my other blog, Focusing On Reality. It's been months since I've posted there, so why doncha pop on over and give my stat counter some activity. It'll make me feel good and I'll owe you one. :)



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Friday, October 22, 2010

Of Late

I was just thinking that halloween is like a kick-off party to the massive weight gain olympics that are The Holidays and I am really hoping that if I derail that train by not buying any candy that I like for the trick-or-treaters (read: buy stock in candy corn) that maybe my caboose won't end up so overloaded at the end of the line.

Oh hey, looks like this is going to be another random, blurty post. I feel like I should apologize for these, but mah hed hertz, so screw it.

I got myself a urinary tract infection (uti). And the antibiotics are only semi-working and are triggering horrible headaches. And I can't afford pyridium. Per my doc and the antibiotic manufacturers, it should be cleared up in about a week. Only seven more days! (she cackled crazily)

I got an idea to decoupage a couple of boxes to make myself some cute little cubbies. The great thing about decoupage is that it comes out really well, really easily. So, despite my haphazard cutting and my messy flour/water glue, they came out really cool. Better, at least, than the plain brown boxes I'd been using previously for the same purpose.

I had my first real biking migraine incident. I wasn't feeling great but we needed to go to the food bank and it's only a few blocks away, so I decided to risk it. I made it about a block before my migraine impaired aim careened me over a few sharp sidewalk elevation changes, which gave me several hard jolts in a row. I stayed upright, didn't even need to stop the bike actually, but my head felt every bump and I suddenly felt very sick. Then of course, noises got louder, the sun got brighter and hotter, and I felt like I was possibly floating several feet behind my body. I made it there and back, but I've been off-kilter since. My head is waxing and waning and making me moody as hell. I'm confused and nauseous one minute and making zucchini brownies the next.

Though, that might also be due to my current lack of meds. I'm having to ration and go without, so I'm less able to work through the pain. But when I do indulge in pain relief I can't stop myself from being productive, which triggers more pain, for which I can't medicate, and then I'm back where I started.

Forcing relaxation is an uncomfortable feeling. But I think a cuppa, a heat wrap, and a massage from my man might be just the ticket.

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Saturday, October 16, 2010

And Taking Names

I just got home from a six mile bike ride, my furthest yet. And I am exhausted. So here's some lazy stream of consciousness. This is always fun.

I've been alternately super-healthy-raw-foodie girl and junk-carb-binger-lady, often within minutes of each other. I don't know if it's pain, side effects from the drugs, or just my desperation and frustration at being trapped inside the house for days at a time during that last heat wave, but I am having serious problems regulating my portion sizes and frequency of meals. The other day, I kept eating something I wasn't even enjoying, despite a full and unhappy stomach. I could hardly stop myself. It doesn't help that I've always had a loaded relationship with food. I really hate when I have problems that feel entirely of my own making.

My laptop died, so our internet was down for a few days while my boyfriend cobbled together a desktop for me. This left me naked without my usual bevy of distractions. I kept myself sane by reading, sewing, crocheting, cleaning, cooking and just a smidge of anxious wall staring to fill the time during which I would normally be sucked into the internet. I felt like a pioneer girl. It was character building.

My head's been pretty relentless, though, which has been inhibiting any sunshiney ventures. There has been very little bike riding, besides my triumphant comeback today. BUT, I have managed to have my first moving collision. Ruts are tricky.

I think the Vitamin D has improved my energy levels. Even when I felt well enough, head wise, to do stuff before, it was always a huge struggle. I was so tired all the time that before I'd even get out the door I'd be wiped from just the prep of leaving. But since getting my weekly high-dose (50,000 iu!) I've been leaving the house consistently, if just for a walk up and down the street. And that has worked wonders for my mental health. I feel less trapped, scared, and helpless when I can participate in grocery shopping. And i tell you, mopping the floors feels like the greatest accomplishment ever when you haven't done it in weeks.

In fact, I am so proud of myself every time I accomplish something I haven't in a while, I've taken to calling myself an asskicker. As in:

I'm riding my bike in figure eights, almost perfectly keeping to the same path. I am not falling over. I crow, "(Boyfriend) look at meeee! I'm an asskicker!"

Or:

Boyfriend walks in the kitchen, is blinded by the unusually clean and shiny surfaces. He comments on the difference and I grin, "I know. I'm such an asskicker."

Or today, there was a hill. And it was hard. Actually, it was a little too hard, so I need to wrap this up and ice my dome, but at the top of the hill, I couldn't stop myself, I yelled to my boyfriend, "Did you see me kicking ass?? I am such a freaking asskicker!"


I have no idea whose ass I'm kicking (maybe my own?) or why that phrase even came into my head, but it makes me feel good to say it.

Asskicker.

Say it.


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Sunday, October 10, 2010

Mushrooms for Migraine? Meh.

Anybody remember when I posted that link to that hallucinogenic mushroom page and we didn't ever really bring it up again, cause WOW, what a crazy treatment for migraines, right?!

Well.

**The disclaimer: I, not being a doctor or scientist of any kind, am not recommending that anyone try hallucinogenic mushrooms, for any reason. I did my own research and took my own risks, knew the possible consequences and made my own choices. These may not be the best choices for you. Also, psilocybin (science talk for magic) mushrooms are illegal everywhere that I know of, so don't go roaming the streets, or the woods, trying to score them because some woman on the internet said to. I absolutely did not say to. And we're going to call this whole post fiction just in case someone wants to arrest me.**


As the disclaimer suggests, I didn't enter into this lightly. I found a lot of anecdotal experience on the web, which detailed various methods of ingestion, frequency and results. I compared this information to the few studies I could find about migraines and hallucinogens. It is mostly recommended for cluster headaches, but is occasionally mentioned as being helpful for other chronic pain conditions and some psychoses. After a year of talking it over, off and on, an opportunity presented itself and we took it. Well, I took it. My boyfriend mostly babysat me and rolled his eyes.

I actually ended up trying it twice. The first time, I noticed no real change in my pain, and very little change in my perception. From what I'd read, the dose doesn't necessarily need to be high enough to cause hallucinations, so I'd decided to start low and increase the dose if needed. I tried it again a few weeks later, with a slightly higher amount and a more effective delivery system and I definitely had a reaction. It actually reminded me of a migraine, with the first hint of wooziness and visual distortions and then the full on assault of sensory overload, nausea, confusion and just a dash of panic. It was not an enjoyable experience, for the most part. Interestingly, I endured the majority of the trip without a noticeable headache, but as soon as the rest of me returned to normal, so did my migraine.

I'm unlikely to try it again. Like with many other treatments I've had to abandon, I didn't see enough positive results before the side effects became too much for me. Also, there's the whole illegal thing.

Though honestly, if it had worked, I'd take them as often as necessary, side effects and laws be damned. Now, wouldn't that be a trip?



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Friday, October 1, 2010

Happy Things In My Life

This last (fingers crossed!) heat wave has really beaten me down. I've been reclusive and snappy, exhausted and lethargic, depressed and bored. So, here's a list of the recent awesome, which has been helping me set my head back on straight.

**I have now been on several successful bike rides. I haven't crashed yet, but I did topple over in a highly dramatic and painful way that was surely a joy for all who witnessed it. The fall left strange-looking parallel bruises on my ribs and hip, and some huge purple welts on my shins that make me look all beat to hell. I'm kind of enjoying it. I mean, they hurt a little, but I haven't had a good bruise in a long time, and I feel like that scrape on my right shin and the two bright lumps on my left are badges of pride, well-earned scars of triumph over adversity, or something like that. Every time I bump them, I wince, but I'm also reminded of how much fun it is to bike and how much more exercise I'm getting and how much healthier I feel. I love my bruises!

**I've caught up on last season's Top Chef, am happy ANTM is back, and can't wait to hijack someone's cable for some quality Dexter time. (Hi mom!)

**I've been slowly rereading The Once and Future King, which is one of my favorites.

**I've been looking into school again. It's a constant fantasy of mine, to eventually get a degree (or ten!). I would need quite a few accommodations and would be taking only one class at a time for now, but it would be progress. Which is the goal. Unfortunately there is a mountain of paperwork that goes along with the application process, which really challenges my poor, migraine-addled brain. And then I get discouraged, how would I possibly do well in school if I can't even manage to apply? Which is just fear talking, and frustration. Baby steps.

**I've been hanging dry our laundry as much as possible lately. Now, not using the dryer uses more spoons, with the hanging, and can trigger my head a bit, with the reaching, but I like using less electricity and since I stopped using fabric softener the static cling has been making me crazy. I still dry my towels and blankets in the machine, though. It's an indoor rack, they'd take a week.

**Despite the recent heat wave, I've been smelling fall on the wind. At night, a chilly breeze will kick up, sending the first waves of fallen leaves scraping along the streets. I can't wait for rain.

**I cut my own hair over month ago. I'm not sure if I ever mentioned it, but I'm still proud of how it came out every time I catch myself in the mirror. Hopefully, this'll mean that I'll be able to avoid the perils of a salon for a while.

**My boyfriend. I am ever-impressed by his patience, compassion, and ability. He takes care of me in ways I never thought I would need and never lets me feel shame for it.







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Monday, September 27, 2010

In Which I Am Outwitted By A Bicycle Seat

My first misadventure in biking was extraordinarily pathetic.

I woke up that morning to gray skies of joy. The sun was firmly MIA, so I decided to walk the dog to the park. It was a pleasant, uneventful walk. I took some pictures and she practiced sitting at curbs. We went to the enclosed dog park, and I walked around and scooped errant poop while she sniffed. Then we roamed the regular park for a while, meandering over grass and through picnic tables. The walk home was quiet, too, she strolled perfectly at my side and the sun never did show up.

When I got home I was feeling GREAT. I mean, pain levels at five and below, even with exertion? Kickass! When my boyfriend suggested taking the bikes to pick up my prescription, I quickly agreed. I was nervous, there are a few busy intersections in which I would be riding in close quarters with cars, but the more I can get out of the house, the better, and I was excited about how well the morning had gone.

The sun had since come out, but aside from a few anxious glances at the bright afternoon light peeking through the curtains in the living room window, I tried not to worry about it. My boyfriend unlocked the bikes and put the seats on. We walked them out the front gate, he hopped on and started pedaling away slowly. I started to get on the bike but couldn't. I couldn't get my balance. I was dumbfounded. And my boyfriend was already too far away for me to ask for help. I waited a minute for him to turn around and check on me, but he didn't come back. I was really confused and kept trying to get on the bike and failing miserably. I would swing my leg over and just get stuck. I remembered how I did it before, cock the left pedal up, brace and GO! But it wasn't working. Maybe it was my purse.

I carry a large messenger-type bag that makes me feel a little lopsided sometimes. So I became convinced that it was my purse that was making it impossible to get on the bike. My boyfriend still hadn't come back, I was getting really frustrated and tired of swinging my leg over the damn bike and my nausea was kicking up, the glare off the cars parked on the street was pissing me off and WHERE THE HELL IS MY BOYFRIEND??? I was mad and crying a little, confused and totally unaware that I was fully immersed in a sort of migraine psychosis.

So, I went back into the house to switch out my usual bag for a backpack. But when I got back on the bike I still couldn't make it go. I tried several more times before I started crying again. I could see my boyfriend, half a block up, waiting for me.

I was still straddling the bike, putting one foot on the pedal and stopping, trying the other and stopping. Finally, I realized I couldn't get on the bike because the seat was too high. It's happened nearly every time I've gotten on the thing, my boyfriend takes the seats off the bikes for security reasons and never puts mine back on at the right height. I had always identified the problem quickly before, but my poor migraining brain just couldn't see it this time.

Now, I have no idea how to adjust the seat height by myself, so this revelation wasn't very helpful because my boyfriend was still half a block away and stubbornly not coming back. So, I got off the bike and stared at him. Just stood there, still quietly crying from frustration, and stared. His small, blurry form seemed to stare back. Then he started gesturing, wondering if I was coming, what the hell what taking me so long. I just stared. I couldn't yell for him, I knew it would hurt. Even waving my arms felt like a bad idea. And I still had no idea I was migraining.

FINALLY, he came back. But it was already way past too late to salvage the operation, if it had ever really been a good idea. He adjusted the seat, but I was exhausted from my ten minute attempt to get on the thing and couldn't calm down. So, I just went back inside and cried it out. After a minute or so, I realized I was trying not to hyperventilate because the seat was too high on my bike and it suddenly occurred to me that I might be migraining and maybe I should lie down.

So, I iced and medicated and regained my balance. But, I was very emotional for the rest of the day. A character on a television show mentioned a lost child, and I teared up, unable to imagine what it would be like to be a childless parent. I walked into the kitchen three times to get water and kept getting distracted, ended up raging out a little on our ancient brita pitcher. My head was hurting, but no more than usual. The major symptoms of this migraine flare were confusion and "irritability", which has to go in quotes because I'm not sure if that level of grump still counts as irritable or if it leans more towards volatile.

Anyway, it was a good lesson, one that I am tired of not learning. I can only do so much in one day. Triggers are never to be ignored, even if I feel well. And I need to learn how to adjust the bike seat myself.

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Sunday, September 19, 2010

The Reluctant Acupuncturist

I've seen her twice now, and I haven't seen a needle yet.

She's actually an internist, with a background in research and integrative medicine. She specializes in treating illness without pharmaceuticals, utilizing nutrition, physical therapy, biofeedback and, most importantly, acupuncture. She was recommended by my PCP, who really hit the nail on the head with this referral.

It was a normal first visit, lots of talking. She did a rapid fire exam that left me a little winded and started asking funny questions, like what color would you prefer a blank wall to be? She looked at my tongue and told me my spleen may be wonky. Then she talked for a long time about how she doesn't like to dive right in to acupuncture without knowing the whole picture. It was a long speech and I don't remember most of it because she was talking really loudly and my head doesn't like that. Is there a nice way to tell someone they are loud? I haven't found one yet.

She's the one who ordered the super-duper blood panel and we went over the results in the second visit. She still talked loudly, but I was prepared with the full on outdoor earplugs in. This woman's voice is like a jackhammer, people. But she's fabulous, and went into great detail about my test results and what they mean. I did my best to retain the info so I could regurgitate it here, but I may have mixed some bits up, so forgive me if something is off.

The high cholesterol, but normal blood pressure and lowish sodium levels told her that my adrenals aren't functioning properly. And that, in combination with my lowish progesterone, iron and potassium indicated that my body is having trouble absorbing nutrients and regulating electrolytes. Or maybe the progesterone was part of the adrenals thing. Anyway, these are common results with chronic pain, but these imbalances can exacerbate symptoms, ie increased sensitivity to pain and feeling exhausted. OH, which are ALSO side effects of low vitamin d. I had googled it, but the doc was a lot more concerned about it than the internet was, for once. (The internet is usually a bit of a hypochondriac, right?) She said that I was way below normal for both types of D, at 14 ng/mL when the low range is 30. She said she'd actually like me at 80, for being a chronic pain patient. So she gave me a scrip for it (I had no idea you could get prescriptions for vitamins!), one 50,000 iu pill a week. Then, she directed me to the internets to buy a certain brand of multivitamin that has the right sources of nutrients, and the right amounts. I reassured her that I was already taking a multi and fish oil and then she burst my bubble with the knowledge that not all vitamin makers are searching far and wide for the best sources for their vitamins. I thought that little USP symbol on the side of the bottle was enough, but she says no, that you really have to look further and learn about the ingredients and their effects on the body. She actually said toxicity. Really, it surprised me how little that surprised me. The more I learn about regulation and practices in the business of consumables, the more I wish I had my own little organic and responsible island on which I could hide from the petroleum and genetically modified soy that are in EVERYTHING.

So, once I get enough cash (donate button!), I'll be purchasing some high-falutin', non cancer causing vitamins and hopefully we'll get me back to healthy. Ish. The plan is to retest me in a month or so (yay more blood draws) and then go from there. Maybe with some actual acupuncture. Sigh.

Anyone have any suggestions for the loud talkers? I figure I'm going to say something in the next visit, regardless. Help me not be offensive?


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Friday, September 17, 2010

Invisible Illness Week, 2010

In recognition of Invisible Illness week, I give you the meme:

1. The illness I live with is: chronic migraines

2. I was diagnosed with it in the year: 2007

3. But I had symptoms since: 2007, it was a pretty sudden onset. Though I have had occasional symptoms since childhood, like the subtlest of foreshadowing.

4. The biggest adjustment I’ve had to make is: being quiet. I miss being at the heart of a good raucous clamor.

5. Most people assume: that I'm weird, crazy, fragile, lazy, antisocial, entitled, snobby or rude.

6. The hardest part about mornings is: immediate pain. It's easier if I get an hour to wake up before it sets in.

7. My favorite medical TV show is: I like House, but I really hate the way they've dealt with his pain and drug use. That show could have done something great, something validating, for so many people who live with pain daily and medicate responsibly. But, no.

8. A gadget I couldn’t live without is: my laptop. The internet is entertainment, education, community, and convenience. It is necessary.

9. The hardest part about nights is: nothing is open. I could operate totally at night, if society would only let me.

10. Each day I take __ pills & vitamins. Less than 5.

11. Regarding alternative treatments I: am gung ho, as long as I can afford it.

12. If I had to choose between an invisible illness or visible I would choose: I don't know. It's choosing between illness and illness. The visibility wouldn't be the most important factor in the choice.

13. Regarding working and career: I don't work.

14. People would be surprised to know: that my medication is not for their recreational use. It's a prescription. For pain. Not a party favor. EVER.

15. The hardest thing to accept about my new reality has been: the constant struggle. I almost wish I couldn't remember when it was all so easy.

16. Something I never thought I could do with my illness that I did was: You know, I can't think of a single thing that I "never thought I could do". I've always been fairly certain that I could accomplish anything, with enough time and resources. And it's the same now, even with daily pain, it'll just take even more time and even more resources. But going uphill is still moving forward.

17. The commercials about my illness: are not for me. An excedrin migraine ain't gonna to cut it, Peggy.

18. Something I really miss doing since I was diagnosed is: just going. Being spontaneous and driving myself to exhaustion without a care in world because I could just go to sleep and be brand new the next morning.

19. It was really hard to have to give up: my freedom.

20. A new hobby I have taken up since my diagnosis is: sewing! crocheting! blogging!

21. If I could have one day of feeling normal again, I would: just go. Frolic on the beach under the sun. Run with my dog. Make plans with everyone I know, and talk and laugh and dance for hours, with all of my favorite music playing in the background.

22. My illness has taught me: compassion.

23. One thing people say that gets under my skin is: "must be nice", or similar sentiments in reference to me not working, or to me sleeping half the day, or how much time I spend on leisure activities, etc. That assumption, that not participating in productive life is my preference, enrages me.

24. But I love it when people: act normal around me.

25. My favorite motto, scripture, quote that gets me through tough times is: "It's my life, I do what I do."

26. When someone is diagnosed I’d like to tell them: You can learn to live with this.

27. Something that has surprised me about living with an illness is: my adaptability.

28. The nicest thing someone did for me when I wasn’t feeling well was: I can't name just one. Every time someone turns down the lights or the music without making a fuss, or when my boyfriend rubs my feet, or when the doctor's office gives me a quiet place to wait, it feels like the nicest thing anyone's ever done for me, every time.

29. I’m involved with Invisible Illness Week because: I have an invisible illness and I'm not alone.

30. The fact that you read this list makes me feel: visible. This is the only answer I remember from last year's questionnaire, and it's still true.


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Monday, September 13, 2010

Instant Karma/Bike Riding

I went on my first bike ride in more than fifteen years. It was scary and exhilarating and exhausting. And came with a funny story, which always works for me.

This has been a long time coming. My boyfriend is a skilled bicyclist, he can maneuver himself around on the thing like it's an extension of his body and he makes it looks effortless. It's very impressive. He's been trying to get me to bike with him for ten years, since we started dating, but I've always declined because a) I didn't have a bike that fit me, and/or b) my knees hurt, and/or c) I have terrible balance and am scared. But need for transportation more efficient than my feet and less expensive than my car made me rethink it, and several months ago I finally told my so thrilled boyfriend that I was ready for a bike. Then he started building me one.

I know, BUILDING it.

A note about my boyfriend, and our relationship: We are freakishly symbiotic. We have a few things in common, like a silly sense of humor and a love of sci-fi, the beach and good food, but in most ways we are total opposites. He is mechanical-minded and extroverted and impulsive, while I'm more cerebral, introverted and methodical. He knows how to do EVERYTHING I don't, and vice versa. So, yes, my boyfriend can build me a bike, and I can barely stay on one.

After months of anticipation I finally got on it last night. I had several false starts as I tried to find my bearings. Balancing is harder than I remember. I found that I am much more comfortable starting out with my left foot, but it's my left knee that gives me more trouble, so that was a little frustrating. And we had trouble finding a good compromise between the bike being tall enough so I can extend my legs while pedaling but short enough for me to get off and on without pulling a groin muscle. This is definitely going to take practice.

So, I finally got up on the thing, and moving. We went a few blocks and I practiced changing surfaces, turning, and not veering off into the gutter. I was starting to feel more comfortable, but was getting tired so we started back home. I was in the lead with the boyfriend a few seconds behind me, watching my six. Suddenly, a dark figure lunged out at me from the dark, "ROOOOOOAAAAR!" and then stepped back, laughing. It was a young teenage boy with a skateboard, backed up by a few of his friends. I recognized his intent a split second before he shouted, so he didn't startle me much, and luckily I was earplugged up on that side so I managed to keep the bike moving in the correct direction. But I did mutter a mild profanity and jerk a little, which he laughed at like it was the funniest thing that had ever happened. As I passed them I felt irritation, but only briefly; they had won the first round, but I had an ace in the hole for the next.

The boys laughed gleefully as they watched me teeter away slowly and took no notice of my boyfriend as he approached them from behind. Once he was nearly on top of my attacker, he turned the bike sharply and shouted, "AAAAH!" in the kid's ear. The boy gave a high-pitched shriek and fell backwards, flailing all the way. His friends roared with laughter, this time at him.

My boyfriend is so romantic. I swooned. And cackled all the way home.

So, we only went about a mile, but I used muscles that I haven't in ages, and my head is totally done. But, I really liked the breeze in my face, and it's been a long time since I felt that sort of freedom.

I can't wait to get back on.



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Wednesday, September 8, 2010

The Results Are In

The short: slightly high cholesterol, low vitamin d and slightly elevated esr.

The long: I knew I was going to come up with some unsavory results. I have been WAY too self indulgent with food. I'm in pain, so I easily fall into the food tastes good/makes me feel good trap. AND my preferred method of pain relief is notorious for it's tendency to increase appetite, and I have definitely fallen victim to the munchies a time or two. Or three hundred million.

And then there's the low exercise. Exertion fires my head up real good, so any exercise is a careful, gentle and sometimes non-existent thing. I walk on my treadmill, or outside, as much as I can, but it's not enough. EVIDENTLY.

I was worried about diabetes as it tends to run in my family as we age/widen, but I came out in the clear. Weirdly, not two hours after I thought to myself, "At least I'm lucky that my sugars are ok!", I found out that my closest friend was hospitalized with a surprise! you're diabetic! crisis. He's okay, thankfully, but weird, right?

So, my sugars were good, but my cholesterol was high, 218. First thing I did when I saw that was take a fish oil capsule. I'm going to be cutting way back on the dairy, and try to introduce more fish into my diet, however intimidating it may be. And the exercise, well there's not much I can change there but I did add some light weights to my treadmilling, for a few minutes every walk.

Having low vitamin d wasn't a big surprise, it's common among migraineurs, and I don't drink cow's milk or go out in the sun much. I like to say that I take a daily multi, but I only take it weekly, at best, unless I'm feeling ill. Just lazy habits, really. So, now I'm taking it every day, like a good girl.

Now, the elevated esr was interesting, as it indicates inflammation in the body. But that could be head related or arthritis related and though it's out of the normal range, it's not much to work with. Hopefully one of my doctors will have more information on that.

So that's what's next: I'll be going back to my pcp to touch base over these results and I'll also be seeing an acupuncturist! Exciting!

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Sunday, September 5, 2010

Staying In

I'm skipping a family get-together today. And here's why:


1. It's hot and sunny. Neither is great for my head.

2. I'm in a bad cycle. I drank caffeine two days ago and am still paying for it. Nausea, dizziness, mood swings and my good buddy pain are unrelenting, despite medication. So, faking the funk for the sake of being social is pretty impossible right now.

3. We'd be taking public transportation. The car needs money that we don't have to be legal, so we've been borrowing cars, walking and bumming rides everywhere for the past few months. Today, none of those was possible and though public transportation is an option, it is often crowded, loud, and smelly. And there would be mandatory walking, which is no good in combination with points 1 and 2.


I can't help but feel guilty. I love my family. I miss them terribly. But I am exhausted.



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Sunday, August 29, 2010

:)

The heat has been beating me down, hard, and getting out of the house has not been a priority. But this morning I awoke with the desire to walk half a mile to the farmer's market, even though I knew I'd be going to my parents' house for dinner later. Most of the time when I do this, it ends badly. Going out in the heat, in the sun, subjecting myself to noises and smells and then carrying several pounds of produce home would very likely trigger a migraine. And having already committed to a reliably exhausting social activity, well, I was practically guaranteeing it. But such is my life and I won't let fear rule me. So there.

So I woke, I wrangled my man and dog, I sunscreened up, packed my bag and headed out. I stopped twice to drink water and took my time, walking as slowly as I felt necessary. Which was actually a decent speed, thanks to some training on the treadmill, yay me! I arrived at the market and slowly assessed my options, not letting myself get overwhelmed by the choices or the people. Once I had successfully purchased my produce we walked back home. A slightly slower clip, a few more water breaks and a pee break for the dog made the walk back seem endless, especially under the weight of the the summer sun. I caught myself wilting and remembered my umbrella. I walked the rest of the way home smugly under shade of my own manufacture. Again, yay me.

Got home and recharged only briefly before heading over to my parents' house for some socializing and dinner. A visit to their house is never a passive for me. Besides the normal talking and eating, which is draining in its own right, I cut my (step)dad's hair, straighten my mom's, then help her pick out outfits for the next week or two, including shoes and jewelry. It can be taxing, but it's nice to be able to do things for other people, and to feel needed. After I finished my chores (heh) I accepted payment in the form of an amazing dinner. My dad is a SERIOUS COOK. Tonight he made seafood paella on the grill. It was pretty phenomenal and a wonderful ending to this fantastic day. Oh. And then there were cannolis that were so good I'm pretty sure eating them counts as sex.

Then I came home. We talked and laughed about this great day we had, the first in so long. I did some stretches in a hot shower and made myself some mint chamomile tea. It's a beautiful life, I remember.

I really needed this day. This wonderful, charmed day that was not without pain but was totally without negativity. I am so happy right now.


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Thursday, August 26, 2010

Phlebotostory

I think I officially have a needle phobia now.

I got an order for a massively comprehensive blood panel and urinalysis from my doc. I was and wasn't thrilled. I mean, yay tests, maybe something will come back that's helpful. But then there's the needle/blood thing. I've learned to warn phlebotomists, and explain my mild aversion. It's never been a big deal, I just don't look, and they are required to warn me before the needle goes in. As long as these things happen, I'll walk away smiling. Unfortunately, the last few times I've had blood drawn and/or an IV it's taken more than one try to get blood flowing and it's been mentioned more than once that my veins are not easy. I don't know what changed, I used to never have a problem. Since the last guy who stuck me mentioned that I might be dehydrated, I drank a ridiculous amount of water beforehand, hoping it would help. So, I don't know if it was me, or the phlebotolady, but she stuck me twice and got nothing. And she forgot to warn me the first time and only sort of warned me the second time with some weird baby talk, "Aaaaaand eeeeaaasy now." What? And then she spent five minutes prodding at my arms and tying the rubber tubing ever tighter to try and find a source of blood in my apparently bloodless limbs. I suggested tapping my hand, since that was the last successful stick I'd had but she demurred, saying that fourteen vials of blood would collapse those small veins. Fourteen. And then I started quietly crying. Not noticing, she continued to blather on about how she would probably have to stick me at least twice anyway, since that much blood would likely collapse any of my teeny veins. Then she laughed a little and looked at me. I was nodding, tears rolling down my cheeks, trying to be strong but failing so miserably.

I think that freaked her out because she finally admitted defeat, which I appreciated. I'd rather she admit she was stumped than keep trying and failing. She suggested we try the guys downstairs, a different lab company in the same business complex. I wasn't thrilled, but really did want it over with. We went downstairs (more nauseating elevators, weeee!) and waited. I was getting more and more stressed. I took a valium, which never kicked in. I suggested that we leave, that I was too stressed out, and then the door opened. Crap. But the new and improved phlebotoguy was a humongous, gentle-mannered man. And I think my boyfriend warned him that I was teetering on the edge because he quietly explained every step of everything he was doing, and the next few that were coming. He had me lay down for the actual draw, warned me gently but clearly, (no babytalk necessary, amazing!) stuck me, then reassured me when the blood started to flow. Once he got down to the final three vials, he started counting them down. He was fabulous. But I still cried a little anyway. I was okay, just mostly relieved and crazy-stressed with the beginnings of a migraine making me even more frazzled.

As soon as it was over, I pretty much bolted out of there, despite being dizzy. Did I mention I'd had to fast, too? As soon as I got out the door, I dug an apple out of my bag and ate it in about three bites, but I was already seeing spots. I've had ice on my head ever since. But at least it's over, and hopefully that'll cover every blood test they could possibly ever run on me. Though I'm a little worried about my urine test. I drank so much water, it was totally clear. I hope they can still get their readings out of it. Whatever, I can always pee in another cup.

Thus ends another eloquent blog post.




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Friday, August 20, 2010

Football, Other People and Onions

My google alerts has been blowing up my email with stories about an american football player, Percy Harvin of the Minnesota Vikings, who has migraines, and has been sidelined from practice. Poor guy. I mean, the migraines are bad enough, but to have every sports related news outfit commenting on it constantly has got to be stressful. Thankfully the paparazzi has not yet gotten wind of my mysterious chronic migraines, but I expect them any day now.

My boyfriend was born in Minnesota and still has family there. When he reconnected not too long ago, someone sent him a care package. One of the things they sent was a bright purple, adjustable, Vikings ball cap. Now, I'm the football fan in the house, and I'm a 49ers girl, if anything, but when my head started up with the crazy scalp sensitivity, that hat, on its loosest setting, was the only one I could wear.

Unfortunately, the Vikings had just been to the superbowl, so my bright purple ball cap was a political catalyst every time I left the house. I was a poser, or a johnny-come-lately, or a traitor. I was yelled at in the streets. Really. To those people, I made an uncomfortable face and said, "It's just a hat. I've got a migraine." If they said anything else, I didn't notice because I was walking away and had earplugs in.

Oh, but the earplugs. Amusement has been ensuing with the earplugs. So, I've been using them consistently for a long time now. I'm comfortable with them, my close friends and family are comfortable with them. Nobody really thinks about it anymore, until someone is talking to me for five minutes and I don't hear a word of it. This happens all the time! And some people get so mad! I don't apologize for it anymore. It's just as much their fault as it is mine, really, because who just prattles on without noticing my total lack of normal social response? Hilarious. Though, I imagine it's frustrating to have just wasted your breath, and have to repeat yourself. And it's probably embarrassing to some people because they feel purposefully shunned, as if my earplugs have it in for them. Or my migraines. Or me.

I get that same reaction with the scent thing A LOT. People get SO UNCOMFORTABLE when I tell them that their perfume/air freshener/incense bothers me. I used to apologize for this, too, but I've stopped that nonsense. And I've learned to kind of enjoy the space that hangs in the air after I announce the presence of an everyday toxin. It's a test of character for the people around me. Can they adapt? How will they react? With anger, disbelief, irritation, pity, or interest? The last is a delight, those people are rare. Nobody wants to hear about other people's problems. Not that I want to talk about mine all the time, but every aspect of my life is influenced by my head, and it comes up pretty frequently, so the people who roll their eyes every time I say migraine, it's noticeable.

Someone once asked me, "We have to make accommodations for you, now?"

YES. YOU DO.

Or I leave. I mean, pick one. And don't act like it's a surprise when I LEAVE. It's my health. And then they get mad. And I go from irritated to bemused, because, really, who should be pissed off, here?

But let's go back to the people who show interest. The ones who treat me like a normal person, who happens to have an illness and disability. Those people are so refreshing. They ask questions, they offer to help, they turn down or off any triggers that I mention. They wash their perfume off and put the scented oil bathroom tchotchke outside. And then, ideally, they let it go and we can go back to normal conversation. There are a few weirdos who want to talk about nothing but my head. They like to pat my hand and "comfort" me, quiz me about my treatments and my symptoms. I like to stand up and walk the hell out of there.

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I had a really great breakfast this morning, green onion and tomato with scrambled eggs. I have read, quite frequently, that while onions are commonly a migraine trigger, green onions are widely accepted as the exception to this rule. Well, they are wrong. Green onions have led directly to an oniony feeling migraine. I knew I should have cooked them longer, but the exception made me cocky. Next time, they will be unrecognizable mush before I turn off the heat. Lesson learned: There are exceptions to exceptions to rules. And I need to go lie down.



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Monday, August 16, 2010

Internetting With Migraine

My computer is a confirmed migraine trigger. This is less than desirable. Several months ago, I had to go offline for a whole week because every time I looked at the screen I had severe eye throbbing and temple stabbing, plus nausea, wooziness, exaggerated afterimages, and the sense that the words were moving on the screen. Since that week, I've learned a few tricks to keeping the migraines at bay.

Every computer I use, if even for a few minutes, I adjust to suit my needs. Toying with display colors, screen brightness, and setting the refresh rate at its highest are tasks that I am so comfortable with, I could make these changes with one eye closed. And have. On a PC, you can find these settings in your Control Panel, under Display. I prefer the High Contrast Black color scheme, which turns letters white and the background black, and I always have a dark-colored, non-patterned wallpaper in the background.

The next most important change I make to my computer is my internet browser. In both internet explorer and firefox, the colors can be changed by choosing the Tools drop-down and then clicking on (Internet) Options. In firefox, click the colors button, and don't forget to uncheck the option for pages to "use their own colors" which would override your settings.


Firefox: Tools-->Options-->Colors


On internet explorer, the colors button is under the general tab, but you'll also need to click the accessibility button to disallow webpages from overriding your preferences.


IE: Tools-->Internet Options-->Colors/Accessibility


Again, I go with a dark background and lighter letters, white or gray or light blue sometimes. If I'm feeling sensitive, I'll block the automatic display of pictures, and stop java from auto-running, which can help to cut down on nauseating animations and unpredictable bright colors.

I always make sure I've turned down the sound. Too often have I innocently stumbled onto a new blog or website only to be assaulted by music or advertising. Sudden noise can send me from a 2 to 12 in a matter of seconds, so I'm very careful about this one. I aim to keep the sound on my computer on mute, if it's not actually in use, but I've started just avoiding websites and blogs that have noises that load automatically.

Also really helpful, I have a volume control above the keyboard, so if I am taken by surprise I don't have to navigate the cursor to that tiny little volume button, I can just reach over and stab blindly at the mute button. I must say that one of my favorite things in life right now is mute buttons. On television remotes, car stereos, and on laptops, the mute button makes every day a (very quiet) holiday.

With all the potential for triggering my very sensitive head, one would think that I'd stay away from the computer. I'd watch TV instead (which, btw, is also somewhat triggering, but in a different way), or read a book (heh, also triggery), or stare at the walls vacantly (not a trigger, but very boring). Why would I subject myself to the possibility of pain?

Because the internet keeps me connected. Email, instant messaging and various social networking sites let me be a part of the world, even when I am forced to be so apart from it. And the internet keeps me educated: healthcentral (Speaking of, they keep an updated list of clinical trials for migraines and I just emailed about two that I am interested in!), webmd (symptom checker, anyone?), and google are my best friends when it comes to keeping up to date with chronic health and patient issues. Also, and sometimes most importantly, the internet keeps me distracted: Youtube (Have you guys seen Old Greg? It gets funnier every time I watch it. (Also, NSFW.)), Gamershood (when I can't escape my room, I play "escape the room" games. Har de har.) and my favorite drug in this entertainment cocktail, Hulu.

Even with these changes (and distractions), sometimes my eyes just can't handle the reading, or the light, or whatever it is that day that is just intolerable, and the computer has to be turned off. On those days, I kind of relish the quiet. My mind takes a long, lazy stretch and welcomes the break from the the usual barrage of information overload. The vacation is nice.

But I wouldn't want to live there.




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Tuesday, August 10, 2010

Coffee Will Eff You Up (Or Maybe It's Just Me)

Oh man, I have no tolerance for caffeine anymore. I only consume it medicinally, to treat my head, and never more than twice a week, per the rules of rebound headache avoidance. But I still love the taste of coffee, so I have to be really careful when I do drink it because I can easily forget, drink two cups and end up giggling maniacally and twitching until four in the morning which leads the following four days to be face-meltingly painful and somewhat crazy-making. And here I am.

I love nature shows lately. When my head is really bad and I feel like death and/or dying, watching a documentary about how the sun is going to fry and then freeze our solar system in a million trillion years or so, or about how an asteroid named Apophis might hit us in 2036 is somehow comforting. It makes my experience smaller, I guess. Puts it in perspective.

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I love electricity. (I'm a little delirious, but stay with me. Electricity is pretty great, you know.) Without it, I wouldn't have my treadmill, or sewing machine or dishwasher and they are the holy trinity of household appliances. And my blender. Let's make it a quartet. Actually, I shouldn't neglect the other appliances that make my life easier, because they might find out and stop working. Like my air conditioner and fan. The refrigerator. The microwave. A special shoutout to the greatest little laptop that could and the waterpik. Am I just naming appliances now? Toaster.

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I wonder how new acquaintances see me. Probably aloof and snobby, or shy and weird. I smile and wave to the neighbors, when I see them, and make occasional token efforts with my boyfriend's friends. I'm not trying to narrow my social field, but I don't have the energy for casual friendships anymore. People that I don't really like tend to suck the soul right out of me, so avoidance is survival. And casual social interaction is taxing, at best, and I'd rather save my energy for cleaning my house, training my dog or spending quality time with my man. Maybe not in that order.

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Hey, I taught my dog a new trick! The one where you put a treat on their nose and they have to wait to eat it. She's been comfortable with sit, stay, up, down, shake, roll over and drop it for years but we had hit a bit of a wall with new material, so learning a new trick was exciting for all of us. Though I think she hates it. As soon as I put the treat on her nose, her ears go back and she gives me the victim-eyes. I am one of those people who talks for my dog and her reaction is very, "Moooooom! Why are you doing this to meeeee???? Just let me eeeaaaat iiiiit! ZOMG TREEEEEATS!" She's a whiner, but she waits. Such a good dog.

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I've been crocheting plastic bags. I know, weird. But they are easy and quick (with my massive hook!) and they might be perfect for christmas gifts. Look at me, thinking ahead. There is something really cool about making trash into something useful.

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So, this is what you get when I overindulge in caffeine four days ago. Scattered, irrelevant blogging. Let's bring it back to the head with some awesome links of interest: An open letter from a doctor to all chronically ill patients, this month's Migraine Blog Carnival is up, and magic mushrooms can be useful in (cluster) migraine treatment. You're welcome.


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