Wednesday, December 30, 2009

X-mas Recap: 2009

All December long, I was feeling the doom and gloom of the impending holidays. Redefining almost every aspect of my everyday life has been hard, but since it's done every day, it's more of a dull pain than the searing, brain-melting, third degree, labor pains I feel come the holidays. Only once a year does my entire extended family gather for a six hour intensive social and since there have only been two of them since my headaches started, I am still actively mourning the loss of my former experience. This year, finally, I was able to enjoy myself again, just differently.

The old way of celebrating was very wasteful. I would bounce about, talking constantly, eating bad food and drinking bad drinks. Christmas eve, christmas day and new years eve would all be over-scheduled. Parties and dinners and shopping and working overtime to pay for the shopping would really wring me out, even with the endless resources I had then. It was a good time, sure, but my relationships were high input, little depth, my life was scattered and frenzied, and the eating and drinking habits didn't do much for my general well-being either. I wasn't on empty, but I was definitely letting the tank run low. And for what? I don't miss those people I don't see at all of those parties. I miss working, but not like a corporate slave. And the eating and drinking? I know what I can have and what I can't and I weigh the consequences of each bite with a sometimes frustratingly sober mind.

Christmas eve was quiet. We had an early crab dinner with the folks, and were home by 7:00. I was up bright and early on christmas morning to head back to the folks for lox and bagels with some grandparents. No onions for me, sigh. After this, I went home and laid down for two hours, one with a scarf over my eyes. I drank plenty of water and tried to keep my mind quiet. Then we visited the in-laws for a bit. The earplugs went in. There was a game on, very loud, and people shouting to each other from different levels of a townhouse. I lasted for an hour before I started feeling twinges of irritation. I let my boyfriend know that our time was short and he started making leaving noises, which prompted everyone to bust out with their cameras (with strobing flash, of course), to make sure they had adequately memorexed the moment. I just closed my eyes when I needed to and waited patiently, practiced my breathing and smiled whenever someone spoke to me. This section of the family knows little about my health and I didn't find family time on christmas day to be an appropriate venue to educate them. We made it out after about an hour, and stopped back at our house. I medicated and slowly organized items for our final stop, christmaspalooza at my uncle's new house with 30 of my closest family.

It was really loud there. Music in the one room, yelling and horseplay in another, upstairs, a few relatives had an impromptu jam session on the guitars and drum kit, complete with amplifier. Everyone talks at once, which results in everyone semi-shouting at once and I stood in the middle with my earplugs so far in my ears I think they touched, and reveled in the fact that I was there. It felt like trial by fire; my flight or fight instinct was kicking in and I was fighting for the right to party with my family. I made it through, though, and didn't shout or cry at anyone.

A few days later and my head still hurts quite a bit. I've also picked up a cold. I barely got out of bed at all the last few days. Though my body feels weak and beaten up, my heart and my mind are so full and satiated from all of the positive energy I had around me. I keep laughing at the memory of my entire family applauding wildly but nearly silently when I walked in the door late. Everyone loved my baked goods, and were all thrilled to receive them. I acquired a few incredibly thoughtful and perfect gifts that have left me simply giddy. I loved watching the faces of others whose gifts delighted them. I could almost see them as children, laughing and clapping over a new toy.

The pain I'm suffering now is totally worth it for the memories. But I am thinking it's going to be a quiet new years.


Saturday, December 19, 2009

Blogging in Tandem

I really enjoy blog carnivals. Interesting topics, talented writers, and varied perspectives combine and the result is a tasty stew of information. I submitted to this month's Migraine Blog Carnival and was featured alongside several other bloggers who all took on the theme, "Holiday Stress".

Check it out and you will be treated to intelligent commentary about chronic illness and the holidays. And my post is there, too. More...

Thursday, December 17, 2009


I was annoyed at Thanksgiving this year, so I had to get a little distance before I could write up the obligatory post. Here is what I am thankful for, a week before Christmas:

1. You. I write about all my head drama and you come here and read it and sometimes even comment and I appreciate it so much. I get shy sometimes trying to comment back. I know I'm weird.

2. My partner. For his friendship, his love, his help and his very presence.

3. Family, of course. I have a large, local extended family and they are all such interesting people, and so kind. I love them all so much.

4. Knowledge. Some days, input is the only way I stay sane.

5. Drugs. For the one that lessen my pain, the ones that "prevent" my pain, and the ones that keep my bowels moving when the pills have slammed them shut.

On the flip:

I am not thankful for people who wear gallons of perfume, then act like I'm being a jerk because I avoid them.

I am not thankful for others' expectations of me and what I "should" be capable of.

And, I am not thankful for the rapid approach of christmas. I have a feeling I'll be writing another rant about how things went crazy with my head and no one understood. I'm tired of that rant.


Sunday, December 13, 2009

Bracing Myself for the Holidays

There is a good chance that my holidays are going to suck. Here's why:

I can not help my sensitivity to fragrances. And I know I complain about them a lot. But, they make my life unbearable a lot. Perfume, cologne, aftershave, lotion, makeup, body wash, hair care products, scented candles, potpourri, incense, and air fresheners all make my head hurt. (And can I send out a special shout-out to the motion sensitive air freshener I've seen on tv? If I walk into someone's house and one of those scent snipers shoots its poison anywhere near me, I'm throwing it of the house like a live grenade.) It seems like everyone brings out their smelly candles and favorite perfume at this time of year. And I end up feeling like a jerk for being sensitive to it.

If the clouds of perfume wafting off of my grandmother like napalm haven't ruined my appetite, the food of the holidays threatens to take me down. 'Tis to season to be a glutton and eating a large amount of crap food never makes me feel good. As hard as it is to turn down another crescent roll, or to not eat one (or more) of every kind of cookie on the table, or to avoid the snack table altogether, it's worse to have to leave early. So, no cookies for me.

I may have mentioned a few times that earplugs: mandatory. I'm also trying to think of creative ways to xmas up my noise canceling industrial earmuffs, just in case it gets extra loud. If I had money I would by some small santa hats and affix them to each muff. Maybe I'll just cut up some snowflakes and tape them on. Of course, there will be pictures taken, so I'll be weighing the embarrassment and comfort factors and I'll let you know who wins.

I wish I had a cute winter hat with a brim. Ball caps and beachy bucket hats won't match my outfit. But, blocking overhead lights has become very important, so I'm hoping to work something out.

I'll have my sunglasses with me at all times. Christmas lights are lovely, but can be bright. Worse, they are often blinky. I simply can't have anything blinking in my eyesight without feeling ill, confused, and getting all triggery.

I bring two bags with me almost everywhere we go now. My purse, which holds all the normal stuff (plus a small headache kit) and another bag with emergency stuff, like a scarf and mittens, the headphones, and icepacks. I don't always need something from my extra bag, but when I do, it saves the day, truly.

So, be prepared is the moral of this story. And be kind to others who may have just come in from the cold and blinking lights.


Wednesday, December 9, 2009

Migraining ER Visit: Not Fun

Well, I've popped my migraine er visit cherry. And it sucked, as was expected.

The adventure started the previous evening, with a follow-up visit in the urgent care. I left the appointment exhausted and sore. My head started in something fierce when I got home, so I was reduced to medicating with narcotics, which didn't do anything. I took a pill to help me sleep and was lucky enough to find some rest.

I woke the next morning in decent spirits. My head was still achy, but not too bad, but I was feeling a little more spaced out than was normal. I started moving around, doing breakfasty things, got a look or two at the morning sunshine, and it was over. It started with the light, but then noise and of course then something smelly happened and the avalanche was coming down all around me so I laid down, slapped an ice pack on my dome and took one of the muscle relaxants I'd had to beg for the day before. 30 minutes later, no change. I took another. 30 minutes later, no change except for the crazy throbbing and stabbing and gnawing. I took two more. 30 minutes later I was sobbing hysterically with my head in my hands wishing for death. I was suspecting that the pill was a placebo, a cruel trick by a sadistic doctor. I checked, and I was already at the maximum daily dosage for my only medication on hand. My heart sank. Normally at this point, I am stressed by the pain, but I have an emergency remedy I can call in for relief. In this case, I had nothing. No pot, no muscle relaxants (that worked), no valium, no painkillers. How did I let this happen? Well, I'm poor, you see. I'm on disability and my boyfriend is on unemployment which pays our bills and not much more. I am on a waiting list to see a doctor who is "allowed" to prescribe me anything real. So, I currently have to settle for whatever the urgent care people will give me, which, so far, has been nothing effective.

Enough of the bitter. The healthcare rant is for another day.

My boyfriend got me breathing and moving enough to take me to the er. I walked out of the first one we tried in a panic; crying babies, and coughing people packed into a standing room only stiflingly hot waiting room that was ripe with the scent of suffering and cheap perfume was not my idea of a good time. We hoped that the next one would be better, and it was. It was 20 minutes away but it could have been another country. It was cleaner, quieter, and clearly had better ventilation. I waited with a blanket over my head to avoid the lights. I kept my 30 decibel earplugs in the whole time. They called me back and instructed me to put on the gown, open in the back. I raised an eyebrow at my boyfriend and put it on over my clothes. I had a migraine, not a bullet wound. They never said anything about it, so I guess it wasn't a big deal. First, they gave me a benadryl/reglan cocktail. Made me feel ill, but my head still hurt. So they gave me dilaudid.

Immediately, I knew it was bad. I was nauseous and cold, sweaty and shivering. Then I started throwing up and didn't stop. I alternated dry heaving and drugged sleeping for 3 hours before they sent me home. "Why am I so sick?" I asked, "Am I allergic to dilaudid?" "No," the doctor assured me, "you are not allergic, but I've never seen anyone react this way." How reassuring. He wanted to give me steroids and I refused. They've never worked for me before, and I just end up sick and miserable. More. So, no thank you. He looked at me like I was an idiot and I dry heaved a little more for him. They finally sent me home and I dry heaved while being wheeled out of the hospital, through the lobby and all. Poor other people. I was probably a vision.

My boyfriend got me home and tried to get me in bed, but I felt sicker lying down and kept heaving, so I stubbornly refused. He tells me that he even tried pushing me over when I'd inevitably fall asleep between heaves. My sleeping self put my hands at my sides and braced against the couch, refusing to topple, scowling at him and possibly growling. I don't know if I believe that last part, but I laugh every time I imagine it, so let's go with it. He did take a picture, which he has promised never to show anyone. But it's funny. My lower lip is stuck out a mile, I'm all bundled up in my hoodie and blanket and slouched over my barf bin, which I am holding loosely in my hands. (Everytime someone tried to take that thing away from me, I'd snatch it back and retch some more, maybe glaring at them a little as if to say, "Get your own barf bucket, bitches, this one is occupado!" Maybe that's why they let me keep it. I seemed so attached. (Or maybe it was that they were sending me home uncontrollably vomiting up my own bile.)

Sorry. I really need to write that medical care rant.

So, my boyfriend rigged me a pillow system so I could sit up in bed, then sat with me until I nodded off. He set up a makeshift table for me with a hamper, leaving me easy access to water and my barf bucket.

I woke in the middle of the night to pee, stumbled through my house on legs that weighed a thousand pounds, swaying with every step, disoriented enough that I couldn't tell if the seat was up or down when I sat and I nearly launched myself through the shower door when I jumped and swiveled to check. I woke in the morning still feeling heavy and weird. It faded by late afternoon. I have a weird rash on my hand and arm that had the IV, like broken capillaries.

They sent me home with a small amount of valium, which I will be hoarding obsessively since I have no idea when I'll get my next bad attack or when I'll get some more drugs that actually help. So frustrating.

This definitely wasn't my worst ER visit ever, and I even learned a few things. I have a sensitivity to dilaudid. If I ever allow someone to give it to me again it will be in small doses. The side effects were obviously horrible, but the drug itself may have merit. I think where it all went terribly wrong is that dilaudid is indicated for those who have an opioid tolerance. I have no tolerance. It was a simple miscommunication, I think. When they asked me what I had taken in the past 24 hours, I said that I had taken narcotics, a small handful of muscle relaxants, and a few sleeping pills and it hadn't touched my pain. I think they thought this was a regular treatment for my head. In fact, it is not. I so rarely take any narcotics that I tend to fall asleep after looking at a half of a dose. But this pain ignored the drugs completely, wouldn't even let me sleep it off. So, lesson learned, my pain has a drug tolerance, I do not.

Sidenote: Apparently, the worse I feel, the more polite I am. I was pleasing and thank youing everyone in the hospital and I think I ma'amed a nurse who was younger than me. I told my boyfriend how wonderful he was and how much I loved him so many times, he was really worried. Not that he doesn't normally know that I think he's great and loved and all, I just express it more vehemently when I am really sick. Like most people do when they are drunk.


Wednesday, December 2, 2009

Triggering Myself

I'm doing my best not to make myself worse. I carry a hat, umbrella, earplugs, and sunglasses with me everywhere I go. I avoid or limit foods that I know to be triggering, so only a few spoonfuls of rocky road ice cream, if any, instead of the small mountain I used to load in my bowl. I do my best to protect myself, but I can't avoid every trigger. In fact, I actually meet a few head on.

The whole inspiration for this post came to me this morning when I was brushing my teeth. As is usual for me, I loaded up the toothbrush, gave it a little squirt with water, and started brushing. I look up when I brush my teeth, to avoid drooling on myself. I look up. Straight into the light above the mirror. I gaze vacantly into the light as my mind wanders and my teeth get brushed. I brush my top teeth, I contemplate existentialism, I stare into the light without even seeing it. I brush my bottom teeth, I compose our next shopping list, and continue to vacantly stare into the light without seeing it. My head starts to hurt and I think, is this toothpaste triggering? Then, I realize, I am staring. Into the light. OW.

Another way I am triggering myself is by unconsciously clenching my jaw. When I'm angry, or lifting something, or growling at my dog in play, or concentrating particularly hard to get something just perfect, I tend to "bear down" with my jaw muscles and I don't think it's a good idea. I don't grind my teeth at all, and I haven't noticed any direct pain from it, but it can't be helping.

Spicy flavors, tart flavors, even very sweet flavors can trigger a headache. Anything strong, that my tongue initially recoils from, will usually result in some head pain. I can do any of these flavors if they are mild, and spicy foods have actually given me some pain relief, but too strong or too much and I'm in trouble. I don't always remember this, unfortunately, until after my taste buds have gone, "WOAH!", and by then, it's too late. I love to put tons of hot sauce in my ramen soup. I like my lemonade tart. I love a moist, fudgy, uber-chocolaty chocolate cake and salt and vinegar chips. My head, not so much.

My own laugh hurts my head. This makes me so sad, I can't talk about it without getting choked up. I've always been silly and funny and giggly and I'm known for my laugh. It carries, it's infectious, and I tend to thrown my head back, open my mouth wide, and have at it with the uproariousness of it all. Unbridled joy. Unrestrained. Unimpaired. To be in pain as a result of a little unselfconscious happiness... is kind of devastating. It's a cruel joke. It makes me angry. I feel betrayed by my own body. Other people notice it, too. When I only snicker a little, or simply smile in response to something funny, it's not of the norm and it concerns those who know me. Well, those that knew me. I don't think anyone really know me anymore, including myself. My pain is changing me everyday, and sometimes I barely recognize myself. Sigh.

The triggers don't always stop me, though. My boyfriend and I take our dog to the park even though I know I'm going to leave with pain. Dogs bark, the sun shines, people talk and yell (and wear WAY too much aftershave), and the seating is less than comfy. But my dog has a blast, my man gets to flex his social muscles with the other dog owners and I get some time out of the house, and the joy of watching them both in action. It's good to get out, even if it hurts. Other activities I enjoy that hurt my head are taking slow walks, going to the library, and spending time with friends and family. These simple activities are always trigger-riddled and always end with an increase in pain, but it's important to me to maintain some sense of perspective. I weigh the consequences, like, should I miss my brother's game, or have my pain jump up a few points for a few days? Can I make it to the party for an hour and just rock the icepacks when I get home? Which is stronger, my head or my fear of missing it all?

Reminded of Cindy McCain's widely criticized comparison of her migraines to her husband's torture as a POW, I consider this question: If my pain was inflicted by an outside force, would I bow to it? Or would I stand defiant? Would I bear all it could inflict with stoicism and strength? And if this outside force had the same tendencies, to hurt me even more if I was having a good time, would I surrender into inactivity and depression? Or would I stick out that good time as long as I could, giving the finger to my torturer as he waited in the wings for his entrance? Some days, it's nothing but defiance that gets me out of bed. That makes me sort of proud.

To sum up: I can't avoid all of my triggers. Most days I feel like I can't avoid any. I am afraid of the pain, but I am more afraid of wasting my life. So I keep moving, and I keep triggering, and I have pain but I have a life in spite of it.


Thursday, November 26, 2009

Binge Cooking

Being in pain makes mealtime a challenge.

My boyfriend tends to eat whatever is easiest, and that is too often burritos from the supermarket next door. While I am grateful that we have a market so close, the proximity does make it hard to resist the temptations of an easy meal when my head is throbbing and I keep crying at the latest talking baby commercial. (I don't know why.) We've had this mealtime problem, and subsequent argument many times. I say we can't afford to be buying burritos for every meal and he retorts that no one wants to eat ramen all the time. I remind him of the stove, fridge, pots and pans just a room away. If he accepts my challenge, he will use every dish and utensil in the house making spaghetti (True story.) and then regale me with tall tales of adversity and bravery in the face of boiling noodles. Between mouthfuls he details every ingredient and stirring technique that his genius probably invented on the spot. Once he's finished his gourmet meal he lays back on the couch and promises to do the dishes later. Which never happens. Seriously. We've had standoffs. I am possibly pathologically stubborn and he is the poster boy for adult ADHD. This has led to our kitchen being a angry hazardous waste zone for weeks until one of us finally caves/focuses long enough to get it done.

But there's good news! We've grown as people and are tired of tantruming at each other. We agree that I cook more logically and consistently well, but can't be counted on to shower every day, let alone cook a healthy meal. Thus the concept of binge cooking was born.

Cooking large meals and freezing liberally has proven to be the easiest way for us to eat healthily. My kitchen adventures usually start the same way: what ingredients do we have, and what could we get for cheap? Once I have my "recipe" and ingredients list, I organize. The more prep I do, the easier it is on my body come cooking day. A few days preceding the day I plan to cook I make lists, double-check the pantry, reference allrecipes and recipezaar, and make sure all the supplies I need are clean and where I expect them to be. The actual day of cooking is never set in stone, though, I always give myself a range of days to choose from, and plan ahead of time. Then, if I wake up on a possible cooking day with a killer migraine, it's not a big deal if I do nothing in the kitchen all day but refill my water glass. And if I have a surprisingly good day a day or two before I had planned to get my hands dirty, I push it up! Can't waste those spoons, now can we?!

The cooking takes anywhere from three to eight hours, the cleanup and packing another two or so. By the end of the night my head is throbbing, my back is aching and I feel a little delusional from the effort. This last binge, I fell asleep with a migraine that night, it woke me a few times, which was new, and I woke with it in the morning, which is really rare for me. But I rolled with it that next day: rocked the ice packs and spent the next 18 hours focused intently on hulu to keep from freaking out over the pain.

These cooking binges always hurt, but I don't mind the pain as much when I've got something to show for it. Not having to cook for the next two weeks is worth it. I try to keep the fridge and freezer stocked with lasagna, chili, bread, casseroles, enchiladas and anything else my little brain can dream up and google.

Binge cooking has saved our relationship, and my sanity. That and the dishwasher.

I'm going to continue this post, focusing more on the economic reasons behind cooking in bulk and even a recipe or two over at Focusing on Reality, my non-head blog that I largely neglect. See you there!

Friday, November 20, 2009


This morning my sheets smelled like evil. About the time I went to bed, My boyfriend went to get a rubdown from our local massage therapist. (Like, super local. Next door. It's odd how many times we've ended up living with or near massage therapists. Has there been a migration in the past few years?) He came back home, pleasantly sore and blissfully ignorant of the danger that clung to his skin. He took a quick (and admittedly careless) shower and got into bed, just barely rousing me from my deep sleep. I was just awake enough to mumble-boss him to get his own blanket as I could still smell the massage lotion on him. I covered my face with my own blanket and fell back into sleep, temporarily shielded from the scent of liniment and lavender. I woke with my face buried in my pillow and as soon as I moved, I smelled it.

It made me gag, though a part of me could recognize that it was faint. It was making me feel sick, angry, and very sensitive. Lights got brighter, noises were sharper, I felt hot and stifled, but my feet were freezing. It was the standard buildup for me. My boyfriend is really getting used to my patterns because when I flipped out at him for something silly, he asked me what the real problem was. "Well let me give you some context!" I spat, all righteous with my bad self. And after a minute of nagging and rambling on about missing forks, soap not being on the wire rack where it goes, and other petty things of this nature, I finally got to it, "...and the bed SMELLS!" His face instantly went from annoyed to sympathetic and I started to cry, relieved that I had finally gotten to the point and that he understood. He immediately helped me form a plan of action for cleaning all of the bedding without having a working washing machine. (It broke a few days ago. It's a problem.) He reassured me that if it all went terribly wrong, if my head exploded and all of my spoons fell out, he would carry it all to the laundromat himself if he had to, through the snow, uphill, both ways. Then he hugged me until I let go. He's a really great guy.

There really is no moral to the story. It's just another anecdote about how easily my day can go wrong, and how lucky I am to have someone to help me bring it back around to right. The last comforter is in the dryer now. I'm tired. But I'll sleep in a clean, unscented bed tonight and maybe tomorrow will be better.


Monday, November 16, 2009

A Glimpse into my World on a Bad Day

Today is a day in which I constantly fight off the urge to smash something. First, my head hurts. I don't really want to get into detail about it. Every time I try, I end up pounding on the keyboard in frustration. Nothing has changed. Besides my entire life. I think I'm going backwards through the stages of grief and have landed back on anger.

We're having computer issues. We have two laptops, one is MINE and the other is an asshole. MY laptop refuses to install and use our new internet source, which means I've been forced to use the asshole lately. The asshole seems fine. It starts up quickly, installs and runs programs easily and plays multi-media like a dream. HOWEVER, the asshole has a few keys that are totally non-responsive. Like P. And tab, the left shift and 90% of the number keys. Using the on-screen keyboard provided by windows, I have full functionality on the asshole, it's just extremely irritating to break the rhythm of my typing groove to have to whip out the onscreen keyboard, or to use the arrow keys and delete instead of backspace when I make the inevitable typo. I tried powering through it and fixing mistakes later. It made me feel totally unbalanced, to look at my paragraphs of half-formed words underlined angrily in red. I've started probably ten different posts on the past few days and deleted them all, in or close to tears, totally unable to focus on whatever subject I was on for all of the typos and interruptions in train of thought.

So, I've pulled out MY computer and a usb drive. I'm typing this up, gonna slap in on the drive, plug in into the asshole, connect to the internet and behold: A blog post!

I've also taken some valium.

I've been checking out some new blogs lately. I'm branching out a bit from the headache and migraine crowd and exploring the world of chronic pain and disability. I've made some additions to my blogroll, but am hungrily looking for more. So, if you know of someone or something that I'm missing, let me know.

I'm getting more irritated with the superficial, materialistic, mass hysteria-like consumerism that has infected this country. Also, ableism is really pissing me off. Britain has admitted to kidnapping children. Other dog owners at the park have taught their animals no manners. I live in the middle of a big city, and I have sensory sensitivities. Today is leaf-blower day. I'm having holiday anxiety already. I keep taking it personally when I hear someone say that they think there shouldn't be a public option, as if they are telling me that I, personally, do not deserve medical care. I really hate these bathtub commercials on tv all the time that are supposed to be more accessible (the ones with no step to get in and a door). I can't stop thinking about what would happen if the tub clogged and wouldn't drain. I haven't bothered to research whether they have a contigency plan for just such an event, I'm just being blindly irritated at this point.

It's one of those days, like I said.

My clothes washer is broken. No word yet on how long it'll take to be fixed. Luckily my parents' house is not far, and they have issued an open invite to launder with them.

I've already declared to all interested parties that I am not doing any kind of formal Thanksgiving dinner. I have relatives who will be attending who wear heavy perfumes in spite of my issues. I have suggested a quiet brunch with my parents on the morning of, since my mom has a sentimental thing with holidays. I'll be back home long before football starts. If I'm feeling good enough, maybe we'll hit the dog park, or take a walk. Holidays are a great time to do mundane things, because everyone else is too busy cooking and family-ing to get in my way and make everything all crowded and noisy.

I just started crying for no reason. Sobbing, really. I think it may have been the leaf blowers that triggered it.

Aaaah... The valium is kicking in. I think I'll switch over to editing a more cheerful post, since my rage is slowly draining away.


Thursday, November 12, 2009


I may have finally found acceptance. I've spent my life looking for it, silently wishing for it from my parents, jumping through hoops to get it from friends, striving and crying for it with lovers, needing it desperately from anyone who looked my way. Only now, having gone through the stages of grief of losing my former life and dealing with the limitations and reality of my new, somewhat more painful one, have I realized that the only place I am ever going to find true acceptance is from myself.

Not to mislead: I am surrounded by love. Family and friends, my partner and my dog, I have no shortage of hugs, supportive words or affection when I need it. But this is not the same as acceptance. Acceptance is non-judging, without condition and has no need for justifications. Acceptance suggests trust, approval, and belief. To ask another person to give me their total acceptance is absolutely not fair. People are unpredictable, mysterious, never say everything they think and usually have motives that they do not share with the rest of the class, if even with themselves. None of these are bad, just human. We protect ourselves by keeping our secret thoughts secret, our actions and words are defined by our experiences, which no one else has had and can therefore never truly understand, and our biological functions, like blood sugar, pain level and hormones, can change our moods and minds so easily it makes me wonder how in control of ourselves we really are. (At all? Are we just walking impulses? Road rage, elopements, drug addiction and love tell me that we are. But that's another blog post.)

To seek acceptance from a fellow human is an exercise in futility. We accept the parts of others that we like, and reject or ignore what we don't. We can be accepting; tolerant and friendly, supportive and giving, but we always (ALWAYS) hold something back. There are many reasons for the lack of acceptance in the world. Some of us are judgmental, we have preconceptions and immovable ideals on which we can not compromise. Some of us have experience that tells us that acceptance is dangerous: we've been hurt before or have seen others hurt as a result of being too open. Some of it is simply lack of understanding, we don't know what acceptance is because we have never had it, or we just don't know how to truly accept another without reservation. People are inherently selfish, we live in our own heads, never really knowing another perspective besides our own, and everything we do is coated in massive varnish of ME. We rarely do anything purely unselfishly. Even charity work comes with a feeling of goodwill and a tax write off. Is my cynicism showing?

I do experience measures of acceptance in my life. From my partner to my dog, my mother, my cousins, and my friends all love me and wish for my happiness, but they do not accept me fully. We have differing religious or political beliefs, which some simply can't abide, so we ignore it (at best). My illness is difficult for people to accept, as their true acceptance would require lifestyle changes on their part. Respecting my need for a quiet, dimly lit environment without a single synthetic smell is something that not a soul in my life has been able to completely do. It's unintentional for many (but not all) to disregard my needs, they simply forget that they'll be seeing me when they splash on the perfume or they think I'm being dramatic about the noise level of the music blaring from the speakers. It's not for me to judge why I am not accepted. It's for me to accept it. I have to accept the lack of acceptance in my world. Confused? Yeah, that's why I'm typing it all out. When I say it out loud it makes even less sense.

To sum up: to thine own self be true. Don't depend on others to give you what you can best give yourself. And do unto others as you would have them do unto you.

The end.


Friday, November 6, 2009


Having arguments with my boyfriend has become a challenge. We have always fought: over messes, money and miscommunications. Our disagreements have ranged from laughter-filled to screaming and throwing things, sometimes simultaneously. We've had some fights that have become famous amongst our friends for their silliness, passion or pure hilarity. Our arguing is an outlet for us, and used to end with a long, deep selves-evaluating conversation, awesome pig out sessions and/or sex. Preferably and.

But our arguments have been less than fun lately. Talking in abundance really hurts, so asserting my opinion has become more frustrating. When I got fired up I used to get a little yelly without a second thought, but no more; now I have to control myself or suffer immediate consequences of soul-searing pain. Same goes for the boyfriend, if he gets a little impassioned in even his everyday speech, I clap my hands to my ears and plead with him to "stop yelling at me." If he doesn't immediately comply, my rage usually takes over and I lose my shit. My hands stay firmly attached to my ears as I scream at him and tantrum my way right into a migraine, so hurt and insulted am I by his carelessness that I drive myself into worse pain than almost any outside noise could. It's stupid and childish and self-destructive and weak. I need to learn to control my emotions, a task that has proven harder for me than any other with chronic pain. It's not an excuse for my behavior, self control is a mandatory quality for me and I am horrified by myself even as I am sobbing about how much I hate hate hate hate hate rage anger hate. (Not a direct quote, but close enough.) We can converse, discuss, and even debate, but once we head into fighting territory it's all hidden landmines and kamikaze nuclear warfare.

I could just let things go. So what if he leaves his shoes in the middle of the floor and I trip on them? There are worse things. And if he leaves dishes encrusted with food for weeks on end, does anybody really suffer? And honestly, the circumcision debate we've been having for the past nine and a half years? We are not even close to spawning, and while I feel like ranting so the whole world knows exactly how anti I am about it, maybe I should just leave it alone until it matters, like when the hypothetical future sonogram shows a penis.

I have not yet mastered this obscure technique my mother keeps mentioning to me called "picking my battles". I only rarely remember to try. I'm a fighter by nature, maybe. I stand my ground firmly and brave the onslaught of the enemy with such unforeseen strength that future generations will probably erect a statue in my honor and the poets will sing of my virtues in battle. Or maybe I'm a little big headed and impatient and think I am right all the time.

Since my pain has lessened my self-control and rendered me nearly incapable of going a day without crying, my sweet boyfriend has just been backing off. He's learning when to fight with me and when to let it go, and he's getting good at ending the fight without bloodshed.

I think I am very lucky that my boyfriend knows chronic pain. And that he knew me before migraines took over my life. He seems to have an endless supply of empathy and understanding. I get so impatient and tired of myself having such limitations and he's right there, pissed off with me, but in the next breath he's suggesting we go for a walk with the camera or that the dog needs some quality wrestle time or that an awesome show is waiting in my hulu queue or that maybe a hot shower and some tea would be nice. His optimism is inspiring and his love for me is humbling. (I have a sudden urge to hug him, brb.)

I am pretty sure that a lot of my unbridled emotion while arguing is coming from a desperate need to control my life again. I am still pretty newly disabled, and I am working very hard to accept my new way of life, but it is sad and frustrating and it makes me want to rage against the dying of the light. The light being my future, which I am having trouble seeing through the fog of pain.

So, I win more fights lately, because my very loving boyfriend doesn't want me to totally destroy myself. These victories are empty and without honor, though, so I get no pleasure from their spoils.



Tuesday, October 27, 2009

Back in the Saddle

Hey Medicare! Thanks for the coverage!

Apparently, the poorer and more desperate you are, the easier it is to get medical care. I walked into the emergency room without a dollar in my pocket and was given a card and a promise of 6 months of free medical treatment. WHAT? I've gone through months of paperwork and hold music and confusing, half-assed pamphlets to try and figure out how to get covered so I can see a doctor again, because, and no offense marijuana, but my self-treatment isn't getting me anywhere but broke. I finally reached my breaking point and went in. I knew my local hospital would see me if I went into the ER, but I had no idea that they would refer me to the "urgent care", which had far fewer screaming children and actual empty chairs that I could sit on. And no wait. I walked in, I checked in, I sat down and BAM! they called my name. WHY DIDN'T ANYBODY TELL ME ABOUT THIS??? They didn't help me much at the time, with a shot of toradol and a scrip for beta blockers, midrin and nortriptyline, none of which have done a thing for me, but this is still good news. I have an appointment for another head scan, a referral to a new neuro, and a renewed sense of future.


Wednesday, October 21, 2009


Is it all my own fault? Did I bring it on myself? I ask myself these questions often enough to make them nagging.

It's not rational. It's not logical. It's emotion, primarily fear and anger based; the instinct to hunt down the reason for the pain, to assign it a name and place blame where it belongs, assign responsibility and correct and/or punish accordingly to be able to move on. Here's where I may have gone wrong:

1. Too much work? My job was in a call center environment, but my coworkers and the nature of my job kept it from becoming mind numbing. I flourished there, got a substantial raise after my probationary period, and more responsibility. I had also taken a second job, doing data entry at home a few hours a week. It was easy to do in my spare time. I enjoyed working so much. I felt productive and in charge of my life again. But maybe I was doing too much. Even though I was enjoying every second of it, even positive stress is stress.

2. Too much caffeine. They had a fancy coffee machine in the breakroom of that job I had, which I took full advantage of, especially when I worked swing or grave shift. Eight cups a day is my guess as to how much I was consuming on average, with a high of twelve. I had no adverse effects to the caffeine, other than occasional shakiness if drank too much or the standard irritability or mild headache if I didn't have any. But, I could go without it, and always stopped drinking it if I noticed any ill effects, so I never considered my consumption to be unhealthy, just a little indulgent.

3. Maybe it's a delayed stress headache. Six months prior, we had a rough patch of christmas, moving, being penniless, and a family member being 5150'd and going into rehab all happen within one week. That time period always occurs to me when the docs ask me, "Were you particularly stressed when the headaches started?" "Well, no... but six months before..." When I tell this story, their eyes glaze over a little bit, they take notes and I can see my file going into the "stress-case" drawer. But all that drama was six months before the headache started. Delayed? Does that happen?

4. Maybe I've exposed myself to some toxin that has somehow triggered my head. I've lived in asbestos and mold-filled apartments, briefly. I partied quite a bit in my youth. I've worked downwind of a dump and used the same plastic water bottle for longer than I care to admit. I smoked cigarettes for ten years. I've worn new clothes without washing them first. I've been violently ill from bleach fumes. How have I lived this long?

5. I could be a nutter and my crazy started before my pain and I'm just in denial about it. The disability shrink didn't seem to think I was nuts, but I'm going to need a second opinion. 95% of the time, I know I'm not crazy. That last 5% is going to get checked out, just in case.

I don't know if I brought this on myself. It doesn't matter. Even if I knew for certain what triggered my head to start, that knowledge would likely give me no useful information, or change anything. Except maybe it would chase away the guilt. Or make it worse. Maybe I don't want to know.

This is a post that leaves me feeling unsettled and vulnerable. But, I know that someone else has felt this way, or will. So, I've got to put it out there, for the honesty of my experience, however lame that sounds.


Thursday, October 15, 2009

My Head is Like Drowning

I find myself wondering how others do this. How do people remain sane with chronic pain in the brain? (Ok, not in the brain, exactly, but there was all this rhyming. I couldn't stop.)

Some days I feel like all I do is complain. Someone asks me how I am, and I hate to tell the truth, but sometimes I do. I come here and write and write and write about my pain and what it's done to me and how I cope, or don't. I cook sometimes, clean as often as I can and mostly try to just make it through. I'm not, really. Making it through. I'm failing miserably and flailing helplessly. You know, I once swam to the deep end of the wave pool, just to see if I would drown. The feeling I had as the waves pushed me under the normally benign, heavily chlorinated water, was the same kind of futile struggle I'm going through now. I know I can swim. But I keep getting pushed under. I can't get a breath. And everyone around me is swimming happily, riding the waves and even splashing at me in play. I'm not sure if they are mistaking my thrashing in panic for jest, or if they don't care. Maybe I swam out too far, and get what I deserve. Maybe, I've taken the metaphor too far and it doesn't make sense anymore. It happens.

I read the blogs and search the forums and google the buzzwords searching for my answers. I'm not looking for a cure, just a hint on how to survive this without losing myself.


Friday, October 9, 2009

My Latest Treatments

Lately, I've been medicating primarily with marijuana. I've also used soma, feverfew, valium, and two different homeopathic pills. As general prevention and body maintenance: meditation, light exercise, getting my greens, and dietary supplements.

I'm finding that marijuana can give me a rebound headache. This discovery has not really lessened my intake. The rebound headache is no worse than my normal headache, and I find it easily avoidable by watching my consumption carefully; amount, quality, time of day, and frequency call play a role in effective pain management.

Soma is an old standby. Not to lessen a headache, but to relax my muscles and keep myself from exacerbating the pain. I don't take them often, maybe four times a month. They are particularly helpful if combined with massage.

I grew some feverfew. So, I've been chomping on a leaf or two every now and again, with nary a result. Then, I googled pictures of feverfew to estimate what size pot I should replant it in and I realized, I have not been chomping on feverfew. I mixed up some seedlings that had been planted at the same time and had actually been trying to remedy my headaches with soapwort leaves. It was not effective. In the past few days, I have tried eating a few fresh actual feverfew leaves, and have yet to notice a difference. However, I'll reserve final judgment until I've experimented a bit more.

Valium was prescribed to me after my occipital shot. I thought it was an odd choice, but realized the benefits when I tried it during a brutal migraine. It took a larger dose than I was was prepared for, but once I got the right dosage, I felt very... controlled. When my head gets bad, I stress. My emotions go wacky, I cry for no real reason, and my anger is difficult to reign. I end up feeling very out-of-control, with my pain unchecked and my reactions not my own. The valium calmed me right the hell down. I still had the headache, but I was able to endure it without feeling suicidal. BONUS!

The two homeopathic headache/migraine remedies I've been trying over the past two months haven't done anything. I won't be buying more. I haven't shut the door, but the screen is locked and I'll be scrutinizing any future potential homeopathic remedies with an even more critical eye.

I've been drinking my green smoothies, and notice a definite difference in my stamina. I take fish oil when I can't have my smoothies because any exertion can trigger my head, and that includes bowel movements. Cheerful!

My treadmill is not getting as much use as I would like, and I have two very good excuses: 1. We can't run the treadmill and the air conditioner at the same time. It's late summer. 2. We live in a small house and my boyfriend is kind of a slob, so access to the treadmill isn't always as easy as it needs to be. But when it's cool in the house and I can reach the thing, walking on that treadmill really makes me feel like I am taking positive steps (hee) for my health. If I get nothing else done in the day, at least I walked.

Self-treating effectively is hard. No one is double-checking my efforts. I often feel like I am making it up as I go along. Am I doing it all wrong? Would I feel better under the care of a doctor? Maybe. But, I'm doing my best with the options I have right now.


Friday, October 2, 2009

Fear and New Challenges

I'm scared.

I've had a headache for over two years. In the time, my life has changed so dramatically, I often wonder if I am still the same person. I used to define myself by certain quailities, hobbies, habits and interactions that are no longer any part of who I am. I can't imagine the future. My past torments me, like a buffet of treats being denied to a starving person. It's a flagrant taunt, a tease, the things I used to be able to do. Enjoying sunshine. Staying up late talking and laughing with a friend. Sitting in a theater, unaware of a thing but what is happening on stage, or on screen. Running. Laughing with abandon.

I don't like my life. It's boring and painful.

I can't plan more than a week ahead. We talk about vacationing, going to beautiful places and doing things we've never done before. Then, reality comes back into focus and the conversation ends. Where could we go that I wouldn't bring my headache with me? It's ruined the past two years, it'll ruin every vacation.

There are plenty of treatments I have yet to try, and there will be new discoveries and one day, maybe no one will ever have headaches.

I am simply terrified that it won't happen in my lifetime and I am doomed to a life of sedentary pain.

BUT, I am working on accepting what I can't change and, more importantly, changing what I can. I'm taking steps towards school. One class at a time is the plan, online or telecourses. Slow, yes, but better than nothing. It seems that my disability and income level will allow me to be educated for free, with "reasonable, yet generous accomodations" for my personal challenges. I don't know if I will succeed, only that I will try.

The whole process is not very migraine friendly, frankly. Just like working with the government agencies; fluorescent lighting, hold music, long lines, and pages of paperwork dominate the experience of applying for financial aid and admittance into college. I am looking at it like my first class. It's going slowly, I do a little every day, some days more than others, and I figure that if I can make it through the application process, I should be alright. Apparently, if I have a doctor sign off on my limitations (ie: extra time for assignments, no/less penalty for missing classes, or even a tutor), and the school agrees that I can be accommodated, I'm in.

This is a silver lining that I desperately need. I've got to keep moving, even if it's so little that it looks like I'm sitting still. It's all relative.


Wednesday, September 30, 2009

More Stuff That Happens in my Head

*** This head-related blog post is being interrupted for a few blog-related announcements. *** I have figured out why blogger wouldn't let me comment on my own blog and others and the problem has something to do with embedding the comment form. I've fixed mine, so, now I will stop ignoring you guys, but I still can't comment on other people's embedded comments through blogger. Any suggestions? *** Also, I have added a blogroll to the bottom of my sidebar! Seriously, scroll down a little and check it out. I read some amazing people. Most of them are pain-related, but not all, because it doesn't have to be all about the ouch all the time. Even though it usually is. If you want to be on or off my blogroll, just let me know!*** Now, back to your regularly scheduled head-related blog post. ***

My latest reflections on all the weird symptoms I've experienced:

I've had months-long bouts of nausea, sometimes from motion (Oh! No looking to the left today? Got it.) but usually unprovoked. I haven't vomited at all, I just generally feeling kind of sick. The sea bands I got are about 50/50. Ginger ale has been my best friend. I just hate drinking all that sugar. I'm working on alternatives. Dried ginger? Can I extract my own ginger juice? Do I want to?

The brain skips/twitches/zaps have been happening off and on. I'm googling it as much as I can, and so far, I got squat. It's similar to the feeling of "shooting rockets", or just drifting off to sleep and jerking awake suddenly, except it's only in my head (my body doesn't jerk at all (well, it does, but in unrelated situations, and we'll get to that later)) and I am fully awake and not sleep deprived or tired in any way. Similar reports come from people going through withdrawal from some drugs. I don't even drink caffeine right now. I take a soma about three times a month. I am smoking a fair amount of marijuana, so that could be it. But, when I used to smoke it recreationally, I never had any twitches in my brain. So, maybe not.

I've had a touch of night-time anxiety every now and then. Nothing too bad, but if I don't have my usual items in place (cup of water, phone, fan, etc.), I get a little nervous. I'm not sure where it's coming from, maybe just a little fear that I'll have trouble sleeping. Which is silly, because however unhappy not sleeping makes me, it's really not a frequent problem and I need not worry every night for something that only happens every few weeks or so.

Infrequently, and only with severe and sustained head pain, I have been totally unable to focus my eyes without covering one of them. I can see plainly with one eye, but with two, it's like they are hopelessly crossed.

I've developed a twitch. It seems to correspond with either a high pain level or a sustained, unchanging headache. So, if my pain has been at a steady 8/10 for a few hours, my right shoulder jumps. It's almost always my right shoulder, unless it is restrained in some way, then it jumps to any available body part. I'm pretty sure it's just a weird reaction to the pain, but I'm not sure. Anyone else get this?

I've been reading up on allodynia and central sensitization. I haven't been able to wear my hair in a ponytail since the headaches started. I often feel very physically sensitive otherwise: like a hard chair will be more than just mildly uncomfortable, or fitted clothes feel constricting and suffocating, or I can't stand the feel of movement against my skin, (so, no, you may not stroke my arm, you may only hold it completely still, and if you move I will shove you away involuntarily) because while it's not exactly painful, it does hurt. It's like chinese water torture. Is this allodynia? I'm still not sure.

I'm also unsure if my body's reactions to stimulus (noises being cacophonous, lights causing pain and nausea) are central sensitization, or a natural part of chronic migraines or both. For example, if I am exposed to an irritating noise, like gunfire on a WWII documentary (to pick a totally random example), I can pinpoint the moment it goes from an "irritating noise" to a "trigger". Something changes in my head and don't just hear it anymore as much as feel it, too. It can become a sort of brain overwhelm and if I can't block it out, I descend into pain and tears. It doesn't have to be noise, though, it could be lights, or smell, (Oh god, especially smell!) any stimulus, really. I can't escape it and I'm sure it's getting worse. Evolving migraine? Central sensitization? Part of me worries that it's psychosis. (Part of me worries that everything is psychosis and I'm in my own twisted version of the Matrix. (I have an active, and idle, imagination.))

The pain has been pretty constant. It is persistently gnawing on the back of my head and/or ripping at the sides, and/or throbbing behind my eyes and/or stabbing in my forehead. It often travels down my neck, stiffening my joints and tensing my muscles, making my shoulders rock hard and impervious to massage, and my back tighten up into knots, aching the length of my spine. I respond with ice on my head, heat on my back, muscle relaxers, marijuana and only in times of grave panic, narcotics. Zoning out on television helps, but nothing too sad or violent, because my emotions can go CRAZAZAZY when my head hurts, and any expression of emotion seems to be a trigger lately, so we keep it light.

My MIDAS score is depressing. I recently took it again, for a potential new neuro, and I didn't bother to add it. I know it's 21+, Grade IV, Severe Disability. I don't like to think about it.

My most frustrating trigger right now is exertion. Bending over, climbing stairs, walking at any speed above a dawdle, and even thinking about going outside for a walk result in a horizontal-making headache. I have better days than others, especially since I've been getting my greens in bulk, but my activity level is too low, even on my best days.

I'm starting to become more in tune with my head, my triggers, and my reactions. The experience hasn't been fun, but with the experience comes the knowledge, and my past pain contributes to my present ability to cope.

If only the learning curve wasn't so steep.


Friday, September 25, 2009

Cindy McCain's Migraines and Me

She has given some great interviews. And she says, and I quote, "I’m going to go to Congress... and tell them that it’s time. If you can give five million dollars to study flatulence in cows and its effects on the ozone layer, you can give me some money for migraine research.”

She's turning me on.

It's a glimmer of hope, having a new and powerful advocate. If nothing else, she is educating the masses in a way most of us could never dream. Even if Congress ignores her, she'll still be a hero to me. She's standing up, she's defying the "suck it up" attitude that many migraineurs have been taught/told is the appropriate response and she's making me feel like less of a freak.

You'll probably never read this, but thank you, Cindy, for doing this. It can't be easy. My heart aches with how much it means to me, and for the rest of the migrainous world. Thank you.


Sunday, September 20, 2009

Invisible Illness Week - A Few Thoughts

I wasn't really feeling Invisible Illness Week, you know? Why, exactly, do I need a week to focus even more on what it is to be abnormal. I don't get a present or flowers, like my mom does on Mother's Day. It's more like Black History Month, I guess. *They* set aside a little time annually to basically give an acknowledging nod to a group of people who are repressed, suffering, or otherwise in need of attention that go largely unnoticed for the rest of the year. Yes?

But, I get it, of course. I'm here. I've got the virtual badge and the invisible illness to go with it. My prize is disability payments and occasional scorn from those who have less than a clue about what it is to be less than perfectly functioning.

I have a grandmother-type person in my life who is well aware of my issues. We've talked at length about my migraines, how I treat them and the effect they have on my life. She, herself, has suffered from ailments of mysterious origins, so she had always been sweet and empathetic towards me. Or, so I thought. I learned otherwise when I overheard her telling someone that she doesn't care who has sensitivities to scent, she's going to wear her perfume because she feels prettier with it. She realized a little too late that I was within earshot, and hasn't looked me in the eye or spoken to me since. Is it embarrassment, or a unwillingness to face the consequences of her selfishness? We've never been close, but her intentionally avoiding even saying hello and goodbye at family events is becoming a little obvious. I'm not rushing to reassure her either, because if she's still laying on the cologne like she does (and she DOES) I don't really want to be around her anyway.

Now that I think about it, my migraines have given me a small gift in that way: I no longer have to deal with anyone I don't want to. People who are too loud or rude, people who smell, people who have personal space or boundaries issues, people who interrogate me about my illness as if that's the only thing I have to talk about, I can avoid them all with one simple phrase, "I'm sorry, but you are giving me a headache." I just throw the "I'm sorry" in there to be polite, but I'm really not sorry. Get the hell away from me all of you insensitive jerks.

I've mentioned this before, but I am nervous about getting my disabled placard from the DMV. Oh, the happy dream it'll be when I can park close enough to stores to still be functional by the time I get in the door. I don't imagine that I'll use it every time I go out, but if I need it, I have no shame. What I do have is a fear of the crazy judger people out there who think that they are the disabled police. If my head hurts, and I need to use a disabled spot to make it in and out of my destination with *less* exertion icing being lathered onto my migrainous cake, I really doubt I'm going to be able to defend myself adequately. Or, maybe I'll just rage out, which happens when the wrong buttons are pushed on my head. What I need is something like a cane or a wheelchair, something that sends the message that something is wrong with me and there is no need to bother me with my parking choices. Something to make my disability a little more visible. **Lightbulb** I bet if I wear my bright yellow industrial-looking earmuffs while I park my car in the blue spot, no one will bother me. They'll all stare, but I doubt I'll get any conversation. Unless I see someone I know. I am NOT pretty in those earmuffs.

What was I talking about again? Oh yeah, sorry.

The nice thing about my illness being invisible it that I can fake it. (This can also be a bad thing, but we'll touch on that in another post.) When I am just meeting someone for the first time, or I'm at a birthday party, I can smile and be quietly cheerful, and no one is the wiser to the demolition that is going on inside my head. I can't keep it up for long, though. Faking it is exhausting.

I do sometimes wish my illness was more visible. It would be easier in some respects. Then again, my invisible burdens weigh me down so much I can barely move some days, so how I can assume that someone else's would be easier, just because they can be seen?

I am what I am, I have what I have, and all I can do is my best with it. So, I do.

Monday, September 14, 2009

30 things for Invisible Illness Week

In honor of Invisible Illness Week, 30 things about my invisible illness you may not know:

1. The illness I live with is: atypical irretractable migraines. Or something along these lines. My doctors have commitment issues.

2. I was diagnosed with it in the year: 09/2007

3. But I had symptoms since: 04/2007

4. The biggest adjustment I’ve had to make is: Being a quiet person, when formerly, I was always the loudest in the room.

5. Most people assume: that if I say I am fine, I mean it. I rarely do.

6. The hardest part about mornings is: waking too early or too harshly. If I wake up wrong, I can suffer for days.

7. My favorite medical TV show is: I would like Nurses Jackie and Hawthorne to join the cast of House please.

8. A gadget I couldn’t live without is: laptop or dvr. both keep me sane and distracted when I'm low, and entertained and educated when I'm better.

9. The hardest part about nights are: I want to go nocturnal and enjoy life without the evil, triggering sun. But my body won't let me. :(

10. Each day I take about 5 pills & vitamins, lately.

11. Regarding alternative treatments I: will try everything once, within reason.

12. If I had to choose between an invisible illness or visible I would choose: This is like a trick question. If it was visible, it would make my bad days easier, maybe people would cut me more slack. But it would make my better days worse, because it would still, theoretically, be visible and I would still get that "special treatment". Or am I reading too much into it?

13. Regarding working and career: I am severely disabled and totally and completely unsure of my future.

14. People would be surprised to know: my internet friends would be surprised to know how shy I am about my illness in real life, and my real-life friends would be shocked by my candor in my blog. Interesting contradiction.

15. The hardest thing to accept about my new reality has been: that I need help. And that I shouldn't be ashamed of it.

16. Something I never thought I could do with my illness that I did was: Coherently blog about it, and have people read what I write, willingly.

17. The commercials about my illness: Are not about me. I am atypical. yay me.

18. Something I really miss doing since I was diagnosed is: being busy. I feel so sedentary.

19. It was really hard to have to give up: laughing with abandon.

20. A new hobby I have taken up since my diagnosis is: gardening.

21. If I could have one day of feeling normal again I would: have a huge party and invite everyone I know. I'd spend all 24 hours talking and dancing and laughing and climbing trees and frolicking wildly.

22. My illness has taught me: humility, accountability, empathy, inner peace.

23. One thing people say that gets under my skin is: when are you going to get over the whole headache thing?

24. But I love it when people: don't judge. and ask intelligent questions. "Have you tried excedrin?" is not one.

25. My favorite motto, scripture, quote that gets me through tough times is: Actually, Michael J. Fox has been a huge inspiration to me, lately. Can't pick a quote, but his whole mentality about disability is amazing.

26. When someone is diagnosed I’d like to tell them: Stay strong for yourself and be easy with yourself. But keep moving, even slowly. And don't lose perspective.

27. Something that has surprised me about living with an illness is: My own strength. I am woman! RAWR!

28. The nicest thing someone did for me when I wasn’t feeling well was: told me to sit down and asked if there was anything I needed. Unsolicited, unconditional, nonjudgmental, unassuming help is sadly rare and heartbreakingly beautiful.

29. I’m involved with Invisible Illness Week because: I need to feel proactive to feel like I am alive.

30. The fact that you read this list makes me feel: visible. Jasmine said it first, and her answer resounded with me deeply.


Saturday, September 12, 2009

I Got a Shot in My Head!

It hurt.

It was another new doc, and this one was a occupational therapist. He gave me an occipital nerve block. I had NO IDEA what that was going to be like. I've decided to write it out, for my own self-indulgent reasons AND for the noble cause of preparing my readers for their own head shots. Because when fifteen thousand unexpected things happen in the space of twelve seconds, you don't want to cry, then giggle wildly and scare the doctor.

Let's start with the actual appointment: By the time we got there, I was already nauseous and hurty. Besides the obligatory overhead fluorescent lighting, they had a radio on. And then there were some insurance shenanigans. So, I sat outside, against the cool stucco wall, and filled out paperwork. Then the tile floor started making me nauseous. Seriously, can I get a break from the triggers already?

It took a half an hour to get into the exam room and another ten to fifteen for the doctor to make his way in. We turned off the lights in the room and closed the blinds on the window, so when he finally walked in, he stopped for a moment, startled by the dark. I grinned at him and said, "Welcome to my world." He grinned back and started singing a song I've never heard that contains that phrase. I was instantly at ease. Even if we got nowhere with the appointment, at least he wasn't going to be a big jerk. Big jerks don't burst into song before introducing themselves. Weirdos do, and I like weirdos, generally.

We established my problems quickly, and he checked my reflexes. After a lot of discussion about my symptoms, he suggested another MRI, one including my neck, and a nerve test. He recommended I see someone with whom I already have an appointment next month. That was cool. Then HE SHOT ME IN MY HEAD!

So, this is how it went down: He asked where I thought I might benefit from being shot. I suggested my temples and he demurred, he'd never stabbed anyone there before. Not wanting to be his first, I suggested the back of my head. He agreed, an occipital nerve block might just help me out. He told me to pick a side, I went with right. I laid on my stomach, with a pillow under my chest and my head dropped forward. He froze my right occipital... area?... by spraying it with some freezy stuff. Unfortunately, the freezy stuff dripped past my ear, down my cheek, and off the end of my nose. It was all alcohol fumes, so I was holding my breath desperately, hoping it would dry before he started the injection. I didn't want to cough with a needle in my head. Then he poked me. I kind of felt it at first, but my skin was good and numb. I was still holding my breath. The smell wasn't gone, but my lungs were concerned about the lack of air, so I started taking short shallow breaths. The nausea from the smell set in almost immediately and a second later, the freezy stuff started to wear off. I could feel it, and it felt really odd. It slowly started to hurt more and more, and I made a weird noise. It was a kind of whiny moan. Then he pulled it out and I had the craziest head rush I've had since I was 22, at a party and not having an occipital nerve block. I started crying without noticing and slurred, "I feel weird." The doctor asked me to clarify and I started giggling, "I've got the wah-wah's." (Which means, for those not in on the lingo, that I was feeling EXTREMELY intoxicated, and my head was buzzing in rhythm with my pulse, which can result in hearing a sound not unlike Charlie Brown's teacher in slo-mo, WAH..WAH..WAH), I kept giggling until I started to creep myself out and then abruptly stopped. I was still facedown. The doctor said, "Ok, well.... hang around for fifteen minutes if you want, take it slow, let us know if you need anything." Then he was OUT of there. I don't know, maybe his lunch was waiting for him, but I imagine that my reaction freaked him out and he went somewhere to drink.

The head rush faded slowly, and I felt sober after a few minutes. I could sit up after five, and stand after ten. I practiced walking before I left the room. The right side of my head felt numb, and for the first time, my headache was solidly only on one side of my head. I walked slowly and carefully out to the car, and by the time I got there, the numbness had worn off and my head went back to an even distribution of pain, no better or worse, though.

By the time we got home, another twenty minutes, I just wanted some ice and my couch. A few hours later, the injection site was sore and my neck was stiff. I kept stretching it gently, and icing. It gradually got worse, and I wished I had asked for narcotics. I medicated as well as I could with that I had; one super ibuprofen, half a vicodin and a couple valium. I went to bed with an icepack and fell asleep quickly.

I woke up the next morning and the worst of the swelling had gone down but it was still sore, and a little stiff. I had a family gathering to attend, and I was feeling optimistic. My head hurt slightly less than usual upon waking, and didn't protest nearly as loudly as usual as I went through my morning routine. I showered, dressed and loaded the dishwasher. My head was all, "Excuse me, darling, you may want to sit for a minute, as this level of activity is a little aggravating." instead of the usual, "OMFG WTF NOOOOOOO LAY DOWN NOW OWOWOW!" This was encouraging.

At the party, I was careful, at first. I had one earplug in at all times, my water bottle filled, I was sitting in the shade and I was feeling pretty good. I was talking and laughing, acting closer to normal than I have in months. Maybe a little too normal. I only made it two hours before I suddenly realized I may have overestimated my capabilities for the day. A migraine was coming.

I was starting to feel irritable and confused. My eyes were aching. I couldn't sit comfortably. It was time to go. I said my goodbyes, and hugged everyone, got in the car and waited. It took us about fifteen minutes to get home. By the time we did, I was having trouble climbing the stairs. It's all a little blurry from there.

It was about 30 hours before it finally broke, and there are no numbers to describe how bad it got.

I don't blame this migraine on the nerve block, since I get them at least once a week no matter what I do. However, I am positive that the severity of this last migraine is directly related to the temporary lessening of pain, which led to me triggering myself being all laughy and chatty. Not the block's fault, just my own for enjoying the reprieve a little too much.

I'm not going to be rushing to get another occipital block, at this point. Any relief it gave me was too minor to be any real relevance. I hear that there are docs who will shoot you in the temple, though, which might give me more dramatic results, for better or worse.

Also, there's the botox. But that's another post.


Monday, September 7, 2009

The Interviews Have Begun, II

When we left me in the neurologists office, here, the doctor was questioning me about my emotional health and had just shooed my protesting significant other, and advocate, out of the room. Let's see what happened next:

The door closed and he paused for a moment. He said I need to get out more. Make my world bigger. Overcoming my triggers? Mind over matter. He went on about it for about five minutes. It was all proactive steps and going outside. Then he recommended I pick up some self-help books and talk to a shrink. I stared at him. I cleared my throat and asked if he had a recommendations of someone I should talk to, "Might as well get a referral, if you know of someone..?" "No. Just call the (generic number of the database of shrinks)." He did not write down the number, and I have no idea what he was talking about. His manner at this point had become very dismissive and a little condescending. I ignored it, determined to reap something positive from the appointment. I asked about the self-help books. Was there one in particular? He said no, just to go browsing and see if something speaks to me. He offhandedly mentioned the book, "Sick and Tired of Being Sick and Tired", which I will probably take a look at. He told me that if I have fulfilled these prerequisites, I should call to make another appointment with him, but without the shrink and book, I shouldn't bother. I didn't find this off-putting at all at this point, however snarky it may come off in my writing, but appreciated his candor. I smiled and shook his hand, said, "I completely understand, no one wants to waste their time." His faced changed a little when I said that, and he knew exactly what I meant. I won't be.

I do plan on seeing a psychologist, but it's not my very first priority. My pain definitely causes me psychological distress, and I want to address that. But it's the order of things that I think is important and the order is: (1.) Pain causes (2.) psychological distress. If we reduce my pain, I'll be happier and more active. This neurologist and I disagreed plainly on this point.

I am not adverse to the self-help section, and plan on leafing through a few, including the one he recommended, next time I'm in the neighborhood. However, I honestly don't think I'm going to find much better information on how to reclaim my life from pain and/or cope with migraines there than I can find on one of my frequented migraine blogs or websites that he so quickly dismissed.

I feel like he sized me up, and he sized me up wrong.

It's frustrating, but I'm trying to look at it like a learning experience. We've learned that we need to go into the doctor's office with the goal in mind. We are a united front. My man is going to work on his communication style and I am going to never allow him to be dismissed from a room again. He is my advocate and even if I do not agree with his choice of words or posture, I have to agree wholeheartedly that he has my best interests at heart.

We have more appointments lined up in the near future with other doctors; a few neurologists and two general practitioners. Hopefully one of them will be a good fit.

This doctor may not have been the right one for me, but he did validate some of my recent life choices and gave me a few things to think about. He encouraged me to keep gardening and to take up other positive activities and to continue self-medicating like I've been, as he seemed impressed by my solo efforts since being doctorless. (But he disapproved of my methods of self-educating, the internet, which directly led to my good* judgment in treatment options. (*Good being subjective, of course.) So, whatev, doc.)



Wednesday, September 2, 2009

The Interviews Have Begun

Had my first appointment in six months with a new neurologist yesterday. I doubt I'll be seeing him again.

Very soon after he walked into the room he made it clear that he would not fill out any paperwork for disability, school, the dmv, et al, on my behalf. Ever. I didn't bring anything for him to sign to this appointment, and he was the one who brought it up (lest you get the wrong idea about me). Since he stated this policy early on in the conversation, I knew pretty quickly that we wouldn't be seeing each other again. A doctor's written opinion and recommendations are going to be very important to me in the next few months, so this was pretty much a dealbreaker for me. Besides, his outright and pre-emptive refusal sent up some red flags for me, as I have never met a doctor who had this attitude. It made me uneasy.

Despite my first impressions, I still wanted to hear what he had to say, and hopefully get a new perspective. He and I seemed to share similar ideas on improving one's quality of life and choosing treatment options carefully and with thought behind it, instead of prescribing willy-nilly, hoping one of the darts will land on the bull's eye. I figured that he may not end up being my doctor, but he was still a doctor and any professional opinion has value, right? (Spoiler alert: Maybe not.)

I told him my story, as well as I could. I was careful about my words while discussing my head's history. I didn't want to forget anything. Then we talked about ways I keep myself active. I talked about how I think gardening saved my life a little, and teared up. He was supportive of this activity and explained to us for a minute about how a sense of accomplishment can effect the brain positively and can reduce pain. I'm familiar with the idea, and I'm, of course, paraphrasing his explanation. We talked some more about how my life has changed, I welled up a few times, too, when explaining how hard it is to socialize and how frustrating it is to not be able to go out. I told him about trying homeopathy, bettering my diet, avoiding my triggers and trying to keep up with daily life.

He asked about the origins of my head pain. I told him about getting shingles, having to leave a job I enjoyed, and my previous doctor experiences.

Then things went south. He was uninterested in my individual symptoms, changing the subject when I start to explain my experiences. He told me I didn't have migraines, because migraines have a clear beginning, middle and end. I opened my mouth to explain the difference between my daily headache and my migraines, but then shut it firmly once he told me that my online resources, communities, blogs and forums were unreliable and an unhealthy use of my time. This frustrated me very much. Just because he doesn't do anything online but download porn and google himself, doesn't mean the rest of us aren't crazy-wicked researching geniuses. (Note: This last sentence may have been composed in a fit of irritation. I'm sure he at least knows how to use his email.) Bitter digressions aside, I can do anything online, including educating myself enough to survive the past two years without a doctor who is truly working with me. And I should have told him as much. But, I didn't. He had proved himself to be untrustworthy, closed-minded and ignorant. When I closed my mouth, I thought it was going to stay closed for the rest of the appointment.

Then he told me I was wearing a hat and earplugs to cut myself off from the world, that I was retreating and using the headaches to avoid reality. I corrected his assumption and let him know that I was wearing the hat because his overhead fluorescents (THE BLINKY KIND!) were making me nauseous and that I always wear at least one earplug out of the house, in case of sudden noise emergencies. And that I only withdrew from the world when my head decided it was too harsh, and I dearly miss my friends and family and working and my LIFE.

Without missing a beat, he asked me if I had ever been diagnosed with an anxiety disorder, or found going outside difficult. I joked, "Not before the pain started." He made a speech about placebos working in people because they have faith. He asked about my relationships with my family. At this point, my boyfriend started to dominate the conversation, as is his defense mechanism when he feels attacked. He told me later that he saw the doctor playing the crazy card a mile away and was trying to head him off. I was already irritated with the doctor, feeling like he wasn't quite understanding my situation, and things got even more frustrating when my usually-polite boyfriend started talking over me to drive a point home with the doctor. (That I'm not unhinged.) The talking and noise were making me confused and cranky, as it happens. So, when the doctor asked my recently-noisy boyfriend to leave the room, I didn't protest. I figured he was going to ask me about our relationship, or some other personal questions.

But he didn't.

Because the joy that was this appointment can not be contained in just one post, I'm cutting the story off here. I'll continue it next week. Stay tuned.


Wednesday, August 26, 2009

Chugging for My Health

I have discovered the joy of drinking my veggies. I highly recommend it.

James at Headache and Migraine News posted an item about green smoothies that left me blending in earnest. I had recently been considering my nutritional intake, and how it plummets when I feel bad. I imagine it doesn't improve anything to be borderline anemic and living off of peanut butter and jelly. But what could I do? The worse I feel, the less likely I am to cook for myself and relying on my personal slave, er, boyfriend to create healthy meals and snacks at my every whim seems like a good idea, but he does have a life, and it doesn't revolve around my appetite. Then came James with his green smoothies and a new era was born in my house.

I was instantly hooked. I stand in my kitchen for 10 minutes every morning, washing and chopping as needed, then pouring liquids and dumping in solids, then blending. I concoct based only on my mood and how my body feels. One day it's a metric ton of chard, a super tart apple, some pomegranate juice and a little honey, for a powerful taste. The next day I may go milder with a half-head of romaine, some peppermint tea and orange juice and a handful of strawberries. I like to add yogurt or soymilk to make it a little creamier. I've found that banana can mask even the strongest green taste and that I don't need to add even a half of the amount of fruit that I initially thought, to keep it palateable.

I go to a farmer's market every weekend my head allows. I used to be afraid of getting too much produce. I hate watching food spoil, but when one is surrounded by organic, fragrant fruits and vegetable, it's hard to imagine that they will turn into a murky swamp of badsmell when you've forgotten them in the bottom crisper for two weeks because you've been flat on your back and unable to even open your eyes when the fridge is open, let alone cook something. After this happened a few times, the farmer's market became less of a candy store and more of endless rows of potential fridge-mush. I stopped buying so much produce, just apples (which last forever!) and strawberries (when I felt brave), and maybe some corn or artichokes. (Which wouldn't always get eaten on time, either, but at least they only dry out and don't actually liquefy.)

Things have changed. The farmer's market is a candy store again. I walk out of there struggling under the weight of my cloth bags. And nothing has gone bad for weeks.

You see, not only are the smoothies making it easier for me to get my veggies and fruit, but getting all the nutrients I've been missing for so long is making me feel better. I have more energy, my mood is improved and I feel stronger, mentally and physically. I can cook, clean and socialize more than I could two weeks ago. I read a book for the first time in months yesterday. I went to a family gathering last weekend, cooked for it, and still managed to have a good time.

The improvement is phenomenal, but by no means has drinking my vegetables cured my headaches. In fact, I suspect that the jump in blood sugar may be triggering, a bit. It seems that a few minutes after consuming a smoothie, I get a temporary spike in head pain, which is accompanied by a strange buzzy feeling. It fades within an hour, and then I feel almost normal again. (Normal being relative, of course.) This possible trigger hasn't dissuaded me from my new smoothie kick, since the pros are so heavily outweighing the cons. An hour-long headache? Please. That's a drop in the ocean.

I recommend everyone start blending, or juicing. There are too many options to to be afraid of the taste, and you can't beat the simplicity. If I can blend up a smoothie with a migraine, you can too! (Just don't forget your earplugs!)


Thursday, August 20, 2009


I still don't think I'm saying it right. HomeOpathy? HomeoPATHy? Definitely inflection on the O. What was my point? Oh yeah! I'm giving it a shot, despite being slightly irritated at myself for it. I'm more than a little skeptical.

I've got to try, though. If I don't, I've already failed. I pride myself on having an open mind. I like to play devil's advocate and try to understand things from as many points of view as my little brain can hold. So, homeopathy isn't the most scientific medicine. It's not the most popular, or even the most radical. I think that I realized I had been totally prejudiced against homeopathy when I told a friend I wasn't interested in trying it, and in the next breath said I'd consider surgery. Then, it occurred to me: Why Not? I'm pretty sure it can't hurt me. The worst that can happen is that it doesn't work and I've blown some money. Just because western medicine only acknowledges it as a pseudoscience (at best), doesn't mean it won't work. It just means that science has no idea if it works, or why. I've been an atheist since I was ten years old, but that doesn't mean that there is no god. Despite my personal beliefs, I've accepted blessings on my head in the name of deities and their respective prophets gratefully. Why not? I accept presents from Santa every year, even though I am pretty sure I am way too old to be on either of his lists. Why not give homeopathy a try? So, I bought two different high-ishly rated (and cheap) bottles of homeopathic headache and migraine pills.

I'm trying one at a time, and the first is a concoction of anconite, belladonna, bryonia, gelsenium (or is that gelsemium?), hypericum (st. johns wort), kali phosporicum, and natrum muriaticum (which is, apparently, salt). I googled the ingredients and all, except otherwise noted, are derived from plants of varying toxicity, from "instant death" to "causes skin irritation". The pills cause a very mild stomach upset, which results in a little burping and queasiness. If I eat something with them, I generally don't notice anything.

My inner skeptic is rolling her eyes constantly. So, she'll probably rule out the placebo effect. If the pills have had any effect on my head, I haven't noticed, yet. But, I'm only halfway through the first bottle, so I'll save my final verdict.

I'd be interested to hear about others' experience with homeopathic medicine. Comment or message me if you have any thoughts you'd like to share on the topic.

Wednesday, August 12, 2009

Working It Out

I got a treadmill and it is good. I started a mini-journal, to keep track of how often I use it and how my head and body respond to the introduction of regular exercise. About halfway through, I realized that it wasn't going exactly to plan, but I stuck with it, just to see how it would develop. Without further adieu, I present:

30 days of Having a Treadmill: How Many Days Do You Reckon I Actually Walked on the Thing?

Day 1: So stoked. Walked on lowest speed for 20 minutes.

Day 2: Used all my spoons on dishes and laundry. Sigh.

Day 3: Walked for ten minutes outside.

Day 4: No spoons. Paris Hilton says shopping is her cardio. It certainly was mine, today.

Day 5: Recuperating from day 4.

Day 6: Still recuperating. Too much pain to walk.

Day 7: Costco. No soul (spoons) left to walk.

Day 8: Twenty minutes! My head was displeased afterwards, though.

Day 9: No spoons. Used them all cleaning. Damn responsibility!

Day 10: Nope, not today. A birthday dinner requires me to save the spoons. *Hoards*

Day 11: Sigh. Recuperating from birthday dinner.

Day 12: 15 minute walk with the dog and the camera this morning! It was lovely.

Day 13: Spent the morning cleaning. And the rest of the day horizontal. No walking.

Day 14: Another 15 minute walk outside! Overcast mornings in the summer are such a rare treat.

Day 15: Excessive cleaning yesterday combined with the possibility of little brother bonding is rendering me a sedentary steph. Poor treadmill. It looks sad.

Day 16: Baking half the night has sent me horizontal.

Day 17: 30 minutes on low! Baby steps are still steps.

Day 18: Didn't happen.

Day 19: 30 minutes.

Day 20: Walked on the beach. Beats the treadmill any day.

Day 21: Nope.

Day 22: Still a bad head day.

Day 23: No.

Day 24: Nuh-uh.

Day 25: Don't think so.

Day 26: Having a bad stretch, here, aren't I?

Day 27: 35 minutes! Only stopped when my head started.

Day 28: Walking on the beach.

Day 29: Cooking and cleaning. No walking.

Day 30: 30 minutes, using higher speeds and incline, even! And then my head said stop.

So, in 30 days, I have used my treadmill and grand total of.... six times! Which sounds sad and terrible, but that is six times I've been able to be active when I otherwise would have been stuck inside, on the couch, sulking. Which is a 600% improvement, right?

This makes me happy.


Wednesday, August 5, 2009

The Falling of Pride

If public humiliation builds character, like my mom says, I should be a cartoon.

I recognize my pride. It's not always the prettiest side of me; stubborn, arrogant, and willfull, but it's me. I own it, and more importantly, I'm learning to let it go when I need to. I tend to use humor as a defensive mechanism, so when I'm so doing embarrassing things in public it's not too big of a problem for me. Make a joke, get a laugh, move on. However, the headaches are depleting my intellect so making a quick, clever joke isn't as easy as it used to be. And being in pain has definitely lessened my patience with others, so I'm not laughing quite as hard at my own expense.

For example, whenever I tell someone I have earplugs in, I run a high risk of them signing and mouthing words to me, trying to be funny. It's not really that funny, except to the person doing the lip-synching, but I'll play along, ask "what?" a few times, if I'm feeling good. If not, I'll just stare and wait for them to stop. (Note: THIS IS EFFECTIVE.)

I have some cognitive trouble when I'm in a high-stimulus situation, like a restaurant. This can make ordering a meal difficult. I can always narrow it down to a few choices, being a picky pescatarian helps, there. But sometimes I get stuck. I can't choose. I feel like crying. I stare at the menu and it stops making sense. Then, I turn to my dining companion and ask, "You choose for me, okay?" They don't mind. I usually get a little teasing for this, but losing ones intellect is a sad and scary thing, so we generally don't joke much about it.

It's not just at restaurants, though. With the barrage of stimulus that daily life brings, the pain in my head, and the medication I take to dull it, my brain isn't working as quickly as it once did, which is giving me a bit of the old Flowers for Algernon effect. The loss of faculties is painful and sometimes terrifying, but the humility it's bringing me is good. It's a well-needed reminder that we are fragile, fallible creatures, and we all have an expiration date.

My ultimate downfall may be my limited ability to ask for help. I have a true dislike of asking others to do what I can't or won't. My ever-henpecked boyfriend would argue this point, as I ask (tell) him to do chores and run errands for me all the time. but, I also wash and fold his underwear, so he has his own special category. He is not everyone else. I could use some help, help that I know my family members and friends could provide. But, I don't ask. I don't know how to. I haven't even admitted, except in ironic or joking situations, that I am disabled. That I am unabled. I am mislabeled. I have digital cable. SEE? I can't even say it without making a joke! Pride will be my undoing.

I went to the beach a while back with some friends. I like to collect seaglass and shells for my garden and can happily spend hours walking up and down the beach, bending to inspect every little shine in the sand. Well, my head doesn't allow much of that anymore, bending over gives me a migrainous head rush that leaves me nauseous and tired, almost immediately. That day at the beach, I had picked up only a few shiny bits of pretty before my head ordered me to stop. I was sad, and told my friend what was up, and that we could continue to walk, if he wanted, but that my quest for pretties was over. When he offered to pick things up for me, I couldn't say yes right away. I was embarrassed and uncomfortable; I have a weird guilt complex about asking for help, even for little things. He didn't wait for me to say yes, just started picking things up that I didn't want and offering them to me, which nudged my bossy gland in just the right spot for me to start giving him direction and pointing out what I wanted. But even later, when my hands and pockets were full, I still hesitated to ask him to carry some shells for me. And yes, I can see how ridiculous I am.

I am not greedy or envious. My wrath is kept in check, as are my gluttony and lust. I'm definitely a lazy person (have I mentioned how much I love sleep?), but it's nothing compared to my burning need to hide all weakness. It's the pride, for sure, that'll get me in the end. I'm getting better about it; letting down my guard more, and asking for help more often and with less shame, but I'm a work in progress. I may reject all forms of pity but gratefully welcome your patience.