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!


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.


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.


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.


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.


Friday, November 5, 2010


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.


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.