Improv is My Superpower

Welcome to my world. It is a place full of mystery, treasure and strange habits that I have trouble explaining. Enjoy your stay.

Showering has been a challenge since my head pain started. I've been working around it by taking shorter, more efficient showers, making some serious routine changes, and when I feel really bad, I skip it altogether and take a sink bath instead. This method has served me for three years, sacrificing neither hygiene nor spoons. Until the Botox. For a month after the injections, I couldn't take a proper shower, or even stand at the sink long enough to give myself a proper wipe down. After two weeks (oh yeah, it was funky) I was elated when I finally came up with the idea of sitting down in the shower (I know! I'm like a genius!), which led immediately to despair as I realized we had no room in our budget to buy a shower stool, which led to giddy excitement when my brain stumbled over the milk crate that had been sitting in the corner holding some old purses. A folded towel goes on top for padding, and voila! I have shower seating.

This was really the best picture I could come up with.




I found a hat! It's cute and functional so I can stop feeling like such a schlump in my boyfriend's grubby old baseball caps. A very good friend (hi!) took me out last week for a little hat searching and denny's loitering. I had decided to brave the mall knowing it held the most possibilities, including several department stores and a gajillion teenybopper boutiques that I really didn't want to have to deal with. We hit Target first. There was nothing but comedy and tragedy in the women's section, so we tried the mens' section on a whim. And there it was.

SO cute. Supposedly for a man, but adorable on me. But it was a tiny bit too small and I had to take it off after only a minute. SAD! But. The bestie suggested we check for a larger size, so we rummaged around for a bit and my heart nearly exploded out the top of my head when I spotted the ONLY extra large hat on the shelf and it was the cuuuuuute oooone! I squeed and hurt myself a little and refrained from jumping up and down but grinned like a goofball all the way to the register. I took it off only long enough for the amused checker to scan it and cut the tag off for me. I felt like the luckiest girl in the world, I had prepared myself for at least an hour of store hopping and disappointment but I had managed to find something pretty close to perfect in the first shot! The moment was glorious. Here I am, in my extra large subtly stripey man-hat, feeling pretty:

If you look closely, you can see a blond dog hair sticking up on the top of the hat. This is how everything I own looks. My dog is small, short haired and sheds like you wouldn't believe.





I've talked about using earplugs extensively. If I leave the house, I've got them in. They have proven to be an excellent solution to my phonosensitivity but were causing the unfortunate effect of irritating my ears. I don't know if my ear canals are unnaturally narrow, but the only way I can wear earplugs consistently without causing severe ear pain was to cut the plugs in halves and thirds. So, now I carry an assortment of earplugs in my pocket at all times. Bigger ones for when I'm around my youngest cousin, a howler monkey of an adorable three year old, smaller ones for indoor conversations with people I can't ask to talk quietly without them taking offense. I get some funny looks when I pull a handful of bright orange mystery blobs (so they look to the unfamiliar), study them and pick through for a moment, then select one and stick in it my ear. Once it actually goes in the ear, most people start to get it, but really, what would you think if you were out with a friend and she pulled this out of her pocket:

and then started shoving things in her ears? My experience says, you'd be confused and might call me weird. It's cool.

I can't hear you anyway.





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The Little Things That Kill

In learning to live with chronic pain and neurological symptoms, I've adapted. I am easily avoiding triggers that, three years ago, I could never have anticipated. It's a little like when I first went vegetarian, how I'd forget that a pork chimichanga was made from a pig, or would dive into a meaty spaghetti sauce without even considering what the chunks were. Changes take adjustment, and adjustments take time. Over the past three years (Happy Painiversary!) I've gotten the hang of my new slower, cautious, quieter life. That said, there are a few triggers I haven't yet conquered:

1. My hair. I should just cut it all off. I swear I will every other week. It's heavy, my hair, even when it's short(er). So, I can't wear it in a ponytail, a bun, or a single braid anymore. Some days I can tolerate the light tug of a small clip holding just the top half of my hair back from my face, or two loose ponytails or braids, but most days my scalp is just too sensitive. I've gotten used to always having my hair down, but there are times I can't avoid tying it up. For example, if I want to take a shower without washing my hair, it becomes an exercise in patience as I try six different ways of twisting/clipping/braiding/loose ponying to distribute the pull as much as possible and avoid the several hot spots that scream at the slightest tug. (And then my arms get tired and I have to lay down for a while and rest from all the hair styling.) I'm searching in vain for a shower cap that will hold my hair securely without squeezing my head too tight, because that seems like the best option I've got, but that's not without its own issues, which brings me to number--

2. Sunglasses and hats. I KNOW, what? The pressure points they create, however light, make my head ACHE, just like an updo. But in the sun, or under unkind lights, it's not as simple as wearing my hair down. It's migraine now or migraine later? Or stay inside under the blankets. I am on a seemingly everlasting hunt for sunglasses that give me adequate light protection without pinching anywhere and a hat that is simultaneously attractive, light blocking and massive-dome-accommodating. It doesn't sound hard, does it? IT IS.

3. Cold, dry air. It irritates my sinuses and immediately the stabbing starts behind my eyes and in my temples. So, when it's very cold, or I am trapped in an air conditioned space, I tend to cover the lower half of my face with my sweatshirt/scarf/blanket/my hand to warm up the air before it hits my sinuses. I look funny, but it helps.

4. Chewing. It's not a constant problem, but if I'm already not feeling well, my jaw often tightens up and it's very uncomfortable to open my mouth more than required to mutter unintelligibly. I suspect I have some jaw dysfunction and I plan on getting myself checked out by a dentist who's into that sort of thing.

5. Rolling my eyes. It's an automatic response to irritating stimulus that I'm trying hard to break. But it's really become a reflex after so many years as a snarky know-it-all, so I'm often catching myself mid-roll, which still triggers dizziness, head pain and nausea.

6. Looking up. Of course, looking up with my eyes is a trigger in the same way rolling my eyes is. But besides that, looking up with my head and neck is trouble, as well. It leads to nausea, vertigo and head pain.

7. Laying down. When I recline, my head pain will often pool itself at the lowest point, and/or wherever there is any pressure on my head. I address the problem with ice packs in a near-constant rotation, and it helps somewhat, but frostbite happens, people. There's your PSA for the day.

8. Bending over. Sounds dirty, right? Well, it is. My house, I mean. Filthy. Because I can't clean it. I am allotted only a handful of elevation changes a day, if that. The more I bend, the worse it gets. This is making doing the laundry and dishes difficult, too, and those are my "easy" chores.

9. Food. There are only a handful of foods that I have confirmed as triggers, and I can get away with most of them in moderation. But the last few times I've eaten raw onions, even in small amounts, my head started to throb and my thinking was fuzzy and my head felt like onions. It's like that feeling in your nose when you get a big whiff, spicy and inflamed. A too-tart orange has triggered a similar reaction: I got dizzy and woozy and my whole head felt filled with citrus, like my brain was puckering. Now, it's not like raw onions and citrus are that difficult to avoid, but since they don't cause a migraine every time, and I love them both so very much, it's been harder to totally let them go. By which I mean, I'm not letting them go and I basically wait for the assault after every tentative bite. I'm such a risk-taker.

10. Talking. And with that goes Listening. I'm pretty much a recluse right now. I talk to my boyfriend and my dog every day, but otherwise I can go days, and have gone weeks, without speaking to another soul. I avoid the phone as much as I can, and email and instant messaging are my primary forms of communication. It works for me, for the most part, but when I do get out and attempt to interact personally with the hordes of loved ones who are used to seeing me every other whenever, I'm worn out ten minutes into conversation. It's disappointing. My own voice is loud in my head, with or without earplugs and other people don't generally modulate their voices well. They get loud or change their pitch when they make a point, or laugh suddenly and sharply, or speak quietly and face away from me, making me ask What? one hundred thousand times. I fantasize about having a universal remote with which I could turn down the shouters, turn up the mumblers, mute the squawkers and change the channel completely when my world gets too taxing.



Look at that, an even ten. You now, nothing in my life is an even ten anymore. It's all twelves and nines, and unfinished sentences. But writing it all down, making an even ten out the ridiculous drama that can be my daily life in pajamas, makes it make a little more sense and feel a little less unhinged. It's hard, but it's not just me.




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These Things Are A Drag

Sometimes, I just want to air my grievances. This is one of those times.

My old doctors haven't even acknowledged my new doctor's request for my records. I see this dragging out for months. They'll probably try to charge me, too. I HATE that practice. My medical records should be accessible by me, anytime I want to see them, uncensored, and FREE.

I'm getting some kind of carpal tunnel-y nerve issues in my right hand. And yet I still can't back away from the internet.

I've been taking pictures, but the camera I am currently using is terrible and that makes me sad.

I did a very simple excel chart of my pain levels for the past few months. Every day is the same, officially.

My house is a mess and I feel like I have no control over it.

I haven't been able to sew a thing recently. My neck is STILL too weak from the botox.

I'm requiring, but not receiving, daily massages to keep my neck and shoulders from going all crunchy, knotted, twisted metal on me.



I'm living moment to moment right now. Anything more is just too hard.




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Breaking News: Crap Food Leads to Crappiness

Before chronic migraines, I ate a lot of crap food. I was too lazy to really cook, so we ate out a lot. And when we did eat at home, it was the half-processed, easy-make food from cans and boxes that can be found in the inner-most aisles of the grocery store where the trans fats rule and the junk-food gravitational pull is the strongest. We were afraid to buy produce because it always went bad before we ate it, and there is nothing sadder than a mushy bag full of rotten, wasted money in the fridge.

The food epiphany only struck me a few months ago. I didn't even want to think about what I was putting in my body, I didn't have the strength to change it, so I felt, and my head hurt way too much to be cooking. But then I discovered green smoothies. And that gave me more energy, and more importantly it gave me the confidence in my abilities to consume produce in a timely manner. So we bought more produce, and I started making salads and soups and stir-fries and smoothies almost every day and not only was I eating all of the produce but we were running out! I was becoming some kind of crazed plant eater, stomping around my kitchen like godzilla, roaring, "MOAR VEGGIES, RAWR!"

A poorly drawn scene depicts the lower half of godzilla (because I can't draw a dinosaur head to save my life) threatening a bug-eyed stick figure. The stick figure holds his arms out defensively and has a speech bubble above his head that reads: "I'll go get the spinach! Please don't hurt me!"

And my poor boyfriend would make yet another trip to the store to fill up the fridge and pile the fruit bowl high and all the while the poor guy wants a burger and fries so bad he dreams about it, and wakes up sad.

I'm participating in a food study that asked me to describe my dream breakfast. I, of course, wrote an erotic story about green smoothies. Okay, not erotic, but I do get really excited at a few points:

As soon as I wake up, I start thinking about my morning smoothie. Do I have enough spinach? Are those bananas about to turn? My mental inventory concocts the perfect recipe for the day and as soon as I'm hungry, it's on. First, the greens. Fill a big bowl with water, plop them in to soak. Find the yogurt and soymilk, grab a banana, consider a pear or some frozen blueberries. Toss some ice in the blender and it begins. I add the spinach once it's clean, filling the blender once, then twice as the little metal blade chews the tender leaves. Add the dairy and the bright green turns a creamy mint color. Add the rest of the fruit of the day and let it go for a minute as I put things away. The counters clean again, I pour my toxic looking beverage into a huge pink cup and try not to guzzle it all at once.

You know you want one.

Since this new eating mindset occurred to me, I've read a couple of books about food (In Defense of Food, anyone? LOVED it.) and watched some documentaries (The Future of Food was very interesting.(That's a Hulu link, for as long as they host it.)) about the evils of corporate farming practices. And it's not good. So I've been trying to buy organic and to be aware of the packaging and whether things are cage-free or hormone-free, and it's funny that the more free of additives or maltreatment a food is, the less economically free it actually is, meaning eating organic is totally unaffordable for me, a person on disability living in an urban mecca of hippies and technology where, if anything, eating organic should be cheaper because there is such a demand. At least that's how it works in my head. Stupid capitalism.

So, with all this suddenly responsible eating I'm trying to do, it wasn't a huge surprise that I started to feel better. Not in a "vegetables cured my migraines!" way, but more in a "crap food is a trigger that I'm now avoiding" fashion. And the less crap food I eat, the more obvious it is that all the salt, sugar, preservatives, artificial colors and msg are terrible for me. My head has spoken, loud and clear:

Eat well, and I'll kick your ass just a little less.


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Dignity is Fragile, Like Exam Table Paper

I saw a new doctor for the first time this week. Woo!

I find myself saying that she is "just a pcp" or "just an internist" as if her lack of a specialty makes her less-than when that is the exact opposite of how this doctor makes me feel. And oh, how she makes me feel. It's like whiskers on kittens and not being condescended to, raindrops on roses and being respected, brown paper packages tied up with string, being treated like a whole person is my faaavorite thiiiiiing!

I haven't had a proper primary care physician (pcp) in years. Every time I'd find someone my insurance would change or disappear altogether. In my recent dealings with specialists and ERs, they have no idea what to do with someone without a pcp. It's apparently the hot new accessory, so I just had to have one.

Unfortunately it's no longer a simple matter of picking a name out of a book. I'm not a healthy person, or a meek one. And I have the internet, which so many doctors seem to resent. I need someone to coordinate my treatment and help me figure out what else I need to try, who else I need to see and what other tests can we run. I need someone who will speak on my behalf to the specialists and ERs and various government agencies. I want a woman, needing a change from the string of crappy male doctors I've left in my wake, and she needs to be accommodating, patient and no-nonsense, because I just don't have the tolerance or energy for anything otherwise. I need a doctor who realizes that she doesn't know everything and is willing to listen to me when I have concerns, questions and suggestions. Because I will. I want a doctor who will help me navigate my healthcare options without bossing me. (I just became aware of the idea that doctors are not the boss of me and in fact, I am the boss of them. It's a revelation to say the least.) I knew that my expectations might be difficult to meet so it might take a few tries before we found someone I liked. I also knew that I might be wasting what few energies I've had lately on interviewing doctors whom I would never see again, because this time I was not going to settle out of desperation, frustration or exhaustion. This time, I was going to wait for the one.

My resourceful boyfriend found a super local doctor on yelp, and the reviews were great. He called the office, had a long talk with an administrator about important things like if the office had air fresheners and how late of an appointment we could get. They answered his questions and booked us for a week out.

So, the pressure was on. And I was feeling stressed. I kept bringing up the upcoming appointment with my so patient boyfriend, who let me go over and over what I needed to get out of the appointment, what I wanted to express to the doctor, how much he should talk, or when he should talk, what we should bring, and what I should wear. Though he did cut me off pretty quickly with that last one. On the day of the appointment I even had a panic attack. I was slightly irritated at something small, I can't even remember what. And it just started to blow up. I started crying and breathing hard. But as soon as I realized what was happening, I stopped everything, sat down and focused on breathing slowly and deeply. I thought of nothing but my breath, and all distressing thoughts were acknowledged and dismissed. It only took a few minutes to pass, thankfully. Overcoming those out-of-control feelings and regaining control over my body left me feeling really strong and confident, so much so that my pride endorphins got me through the walk to the office totally unscathed.

Oh yeah, it's in walking distance. Sweeeeeet.

As soon as we got into the room with her, I knew: This. Doctor. Is Awesome. She was very thorough and really listened to both me and my boyfriend. She didn't interrupt once. She understood that I have run the gamut with the drugs and am really, really tired of it. We talked only a little about treatments I am interested in, extensively about what I've tried and she assured me that we would "finish up" at our next appointment, since we barely touched on anything other than my head. My head is my biggest issue, obviously, but I have some concerns about arthritis and birth control, which she wrote down and promised we would come back to. She is ready to dive in, summon all of my records from everywhere and order new tests. And she sent me home with prescriptions for valium and soma, despite her misgivings about the possibility of addiction.

This is the part where my head explodes from the bafflement. In the past, when a doctor has said that they don't like prescribing something, they just don't give it to me. Why would she write me a prescription for something she doesn't like? I stared at the slip of paper in wonder. Don't doctors make the decisions? (It started to dawn on me slowly, right about here, but I continued with my inner dialogue, afraid to believe it could be true.) She doesn't like prescribing soma and valium, because she worries about their addicting qualities, which is valid, so I didn't argue with her and just waited to see what she would suggest for pain management but she didn't offer an alternative and instead gave me what I asked for.

Hm.

I think this doctor trusted me, essentially.

Color my mind blown. I was so confused. I have never had a doctor openly disagree with me, but do it my way anyway. I expect that we will evaluate my usage in a month or two, and if she thinks I am showing any signs of addiction, she will no longer prescribe it. Which makes sense, doesn't it? A doctor should assume that the patient knows what is best for themselves until it's proven otherwise. OF COURSE. That this basic show of respect has eluded me thus far in my search for treatment is very sad. Is it because I am a chronic pain patient? Or a woman? Young and disabled? Probably all of the above. It took just one appointment with one doctor to release the weight that's been on my shoulders. I've been bearing the guilt of an addict, feeling like the lowliest, most desperate drug-seeking junkie when I beg for a few pills for when it gets bad. And it is never asking, it's always begging because once you ask and they give you the stinkeye-raised eyebrow and then you start to cry a little because your helplessness just smacked you in the face and you see the doctor making the crazy-face and I have never felt so naked as I do fully clothed sitting on that stupid crinkly paper that always rips the second you sit on the exam table, and can we please call it a bench or a bed, not a table, because a table is for objects to be examined, not people. And dignity is fragile, like that paper.

Which essentially the point of this post. I was treated like a real person. Hooray for dignity.


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Why I'm Still Smiling

Three years ago, my life as I knew it ended. My reality of ease and ability was ripped from me slowly, yet oh so suddenly, over the course of a few months. At first, I thought I might as well have died. I floundered, and sank, and mourned and raged and even gave up a few times. Like being born, or trying to breathe underwater, I was learning a whole new skill set, and it was the hardest thing I've ever had to learn. Not that it's easy now. It's still a challenge every day to leave my bed, to function through and above the stabbing and gnawing, and to do it with a smile, at least some of the time.

But I do it. And I am proud of myself every day for living through this. At the end of a bad day, I'll console myself with what I've accomplished. My ever-supportive boyfriend rubs my shoulders and I tell him, often through tears, about how I loaded up the dishwasher, or washed and folded the towels, or made us an awesome dinner or how I managed to get out of bed. Or maybe I didn't, but I did manage to keep breathing, all while being tortured by my own body. When being alive is an accomplishment, you know things are rough.

Now, this isn't meant to be sad, it's meant to be strong. I am in some amount of pain at least 20 hours of every day. And I'm okay. Sure, I battle depression, like an estimated (via google) 3 out of 5 women with chronic pain do. I cry, and I rage, and I still flounder sometimes. But I smile every day and I laugh most. I insist on having a happy life. I refuse to waste my one chance on this planet. I keep my experience in perspective, remembering my privilege. I may be poor and in pain, but I live in a mostly free country with running water and fresh food and a warm, clean bed. My doors lock and I usually feel safe. I have love in my life, and friendship. I have the internet. My life could be so much worse.

So, how do I live with the pain? I keep breathing, even if underwater. I seek out the positive, am somewhat okay with the negative and refuse to be miserable.

Also, I'm not shy about self-medicating.





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Botox Part II: The Aftermath

Remember when I got Botox? Well, I decided to take daily notes of my side effects and pain levels so I'll be able to look back with a critical eye when the time comes to decide whether to try it again. Skip to the end if you aren't interested in the daily moanings of a migraineur, I won't be offended:


Day 1: Woke up this morning with a little tenderness at a few injection sites, but no noticeable changes yet. My head still hurts, so situation: normal.

Day 2: Oh, hello migraine, have you come to beat the living expletives out of me? I see you have! Also, my forehead is a little frozen. I caught sight of myself in the mirror while crying and I looked so odd. Probably not to someone who didn't know me, but my eyebrows usually go all crinkly when I'm upset and now they are largely unaffected by all attempts at scowling. My usual tender spots on my scalp are mostly pain free, which is really freaking cool. Unfortunately, my overall pain level is the same. 9.5 was the peak of the day.

Day 3: I am tired and achy all over. It's like a migraine hangover combined with the day after a serious workout and a touch of the flu. My neck is particularly sore, but I was warned about that, since the tensest muscles are now paralyzed, other muscles are compensating and they are really not used to the strain of holding up my massive head. Shoulder massages have never felt so good. My head was at an 8 at its worst today, which isn't unusual.

Day 4: Still sore, but less so. Bending and reaching are even more triggery than normal, and I am having more dizzy spells. But my pain is still about average, from a 3-7 out of 10, depending on my activities and mood. I'm taking it really easy, no bending, reaching or lifting that isn't necessary. Talking is more tiring than usual, too.

Day 5: My neck is still sore. My headache is totally normal, at a steady 4 in the morning, with spikes up to 8 every time I bend or reach, which I can't avoid anymore as the dishes and laundry are piling up. Moving too quickly is making me dizzy, but I get that as a migraine bonus/aura sometimes, so I don't know for sure what it's tied to. The tender spots on my scalp are coming back, particularly above my temples. My usual throb and ache on the back of my head is lower, and somewhat angrier. The standard thrum on the sides of my skull is milder overall, but the spikes are stabbing more sharply. I foolishly searched 'botox didn't work migraine' and got 38,300 results that are at best disheartening and worst, terrifying. I closed that window. Ice, theracane, medicate, repeat.

Day 6: More of the same. My head feels floppy. Like a poorly made marionette. Of all things.

Day 7: Today, any bending is impossible. My neck feels so weak, the muscles are exhausted.

Day 8: My daily head pain, migraines, and scalp pain are all pretty much back to pre-botox. My neck is still sub-functional, weak and stiff. Daily shoulder massages from my dexterously talented boyfriend are keeping me from going homicidal. Except now I have a cold, too, so lock up the sharps.

Day 9: The neck pain is worse, and it's a lot stiffer. I'm stretching every hour or so, not because I am diligent about my health but because if I don't, my neck scrinches itself up into a tight, tense rope of rock and that really. hurts. my head. I want to wash my hair, but it's currently impossible. This cold I've captured has rotten timing, I feel simply awful today. But at least it's not the flu. I'm watching a lot of Merlin on Youtube, as immobility is the key to happiness right now. And here's another ass-kicker of a migraine. Faaaaaabulous.

Day 10: Mild migraine, floppy head, sinus congestion that's making my ears pop. I feel like a bobble head. I'm ready for my neck to go back to normal now. Please. I'm going to start pmsing any second, too, so something's got to give. Or my head might finally explode.

Day 11: Same

Day 12: My neck feels a tiny bit stronger today. But I still cry whenever I empty the dishwasher. And now I'm coughing, so my head hurts and I have no idea what month it is, so I can't possibly form a coherent sentence about my pain level. I need more cold medicine. Or less.

Day 13: Feeling less sick today. Everything else is the same and I am frustrated.

Day 14: The cold is fading, and my neck feels a little stronger today. Short bursts of activity are tempered by long, extended, rest breaks with lots of pillows for head support. But I wore myself out anyway and am non-functional by midday. 8. If not for my continuing neck weakness, I'd never know I'd had Botox.

Day 15: Same.

Day 16: Small, but noticeable improvement in neck function today. And I have never been so grateful for anything ever.

Day 17: More small but noticeable improvement. For the first time since day two, I'm now able to bend without immediate pain.

Day 18: Bad migraine day overall. A wild guess says that the botox was totally ineffective. At least I tried.

Day 19: Another hard day. I'm just so tired. I need a low pain day so bad right now, I can hardly see straight. Yet my forehead remains unaffected and smooth. Creepy.

Day 20: Medium pain day. Better, but still not good.

Day 21: Three weeks after Botox injections, I finally feel like a person again. I'm able to do dishes and laundry without it ending in tears and I may actually go for that walk I've been daydreaming about.



So, it's back to normal, besides the lingering neck weakness. My head feels just like it did before the Botox. I've read that two treatments are recommended to confirm success or failure, but I'm not sure yet if I'm willing to put myself through this again. It depends on how desperate/optimistic I'm feeling in three to six months.




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