Thursday, April 30, 2009


I've been on SSDI, federal long term disability income, since late November, 2008.

Applying was easy. Waiting for a decision was tedious, but I had been warned. Being approved without having to appeal was a very pleasant surprise. The shenanigans that followed were frustrating and meltdown-inducing. Now we seem to have corrected the problem and I am receiving regular checks. Very small, regular checks. I hate to complain, because I am getting "free money" from the government, but it's close to impossible to live on what they give me. I'm lucky my resourceful boyfriend is able to make enough to cover us both.

Being on disability gets me some raised eyebrows and funny looks. I look too healthy to be not working. I have all of my limbs, no visible scars or malformations. I can speak clearly most days. I don't appreciate feeling like I need to defend my disability. So, I don't. If someone doubts me, I let them. Because I have a headache and I just don't have the physical resources to argue. The government thinks I'm disabled. And that's good enough for me.

I have been trying to come up with some comebacks, so I can respond with more than a grunt if the occasion calls for it. A few works in progress: "Not all disabilities are obvious, jerkface!" or maybe just a "No comment" or "You don't KNOW me." (optional head waggle) Or I could get angry: "I don't look disabled? Interesting, because you don't look like an ignorant asshole and yet here we are." I don't, however, want to get my ass kicked, so maybe I'll lay off the name-calling.

I plan on applying for a parking placard. I know I'll get some looks on that one. But, driving is bad, ok? I can make it out and home and then I'm pretty much done for the day. If I can save myself any stress or energy (ie: searching for parking) I'm going to take it.

I've considered having somebody come out and help me at home, with cleaning or whatever. My pride has not yet allowed me to look far enough into it to see if I would even qualify. If the frequency and severity of my symptoms get worse, though, we'll have no choice. There are standards of living.

I am starting to realize that asking for help may not be the worst thing in the world. It's still in the top ten, though.


Saturday, April 25, 2009

Spring is Making My Face Itch

I've always been allergic to nature. Every change of season leaves me sneezing and dripping from multiple orifices. That came out even grosser than it is. Sorry.

Some of my earliest memories are of nose blowing and creative snot disposal. So, the itching, dripping, clogged up, coughing and general wheeziness that is my life every spring never surprises me, and I'm really good at ignoring it all. Except for the sneezing.

The sneezing started getting out of hand around the time I hit puberty. I suddenly started sneezing in rapid-fire, like an automatic weapon. My record was 17 sneezes in a row when I was in high school. Nothing's scarier than a teenager behind the wheel in the midst of a sneezing fit. The allergies dropped in severity for several years, leaving my early twenties largely phlegm free. This year, they are back with a vengeance. I finally started counting the sneezing fits again. I'm up to twelve. Though it was a bit easier keeping track when I was surrounded by a group of cackling teenagers shouting the numbers in sadistic joy. I miss those old friends.

The problem with the revival of my allergies is that the sneezing hurts my head. Like, woah. During and just after a fit, I'm weak and confused and my head pounds, echoing the spasms. It's the kind of pain that makes me squeeze the heels of my hands into my temples as hard as I can. I get visions of Uncle Fester from the Addams' Family with his head in a vice, squeezing until he pops the headache out (complete with popping sound effects).

Normally, I'm cool with my allergies. I'm a tough broad, no little runny nose is gonna stop me. But this year, spring, would you mind turning it down a notch? My head hurts.

Monday, April 20, 2009

MIgrainous Events

I had a migraine related meltdown at a recent family gathering. Good times! I have a large extended family. The combination of lots of breeding and the occasional divorce and remarriage have made holidays crowded, noisy, and full of shenanigans. My uncles and cousins are rambunctious. We like to eat, drink and laugh. Well, I used to. This last get-together pushed me over the edge.

It was sunny, but cool in the backyard. I was doing my best to keep myself in the game. I was drinking plenty of water. I had one earplug in. I had my mentholated cough drops on hand in case of a grandma-perfume-scented-hug-emergency. I was staying mellow, no yelling or jumping on people. I made it three hours. Hour one was easy, a little bright and talky, but I was feeling good and was pushing through any pain and nausea easily. Hour two was touch and go. There was a search for non-religious colorful ovoids stuffed with candy, which involved a lot of shouting cousins and a frequently bellowing uncle or two. I kept it calm and took pictures, but the activity was starting to get to me. I was rapidly running out of spoons. There was nothing I could do at this point. I tried a cough drop and chugging some water, but I knew nothing short of drugs was going to help. I didn't want to take drugs at the party, it would dull everything and I see everyone so rarely, I just couldn't do it. I really should have. Hour three, I started sliding downhill fast. Nauseous, disoriented, irritable and tired, one uncle turned up the music and there was nowhere quiet to hide. I tried to turn it down and another uncle, this one inebriated and having too much fun to realize what was going on with me, ran up to me screaming "NOOOOOOO!" in my face. He didn't mean any harm, he was an innocent jackass. But, I cracked. I turned and screamed, "YEEEEEEES!" back in his face as loud as I could. My head freaked and pounded back at me as loud as it could. I started to cry, said, "I'm done, I think I need to go home.", turned and ran for the bathroom.

Half of my family was watching and I was/am so embarrassed. No one reacted much. I talked to the screamy uncle afterwards, and we're ok. My mom helped me get through the next half hour of the party, which I don't remember much of, other than smiling for pictures and thinking I might throw up on my cousin. I got a few pats on the shoulder, and a couple relatives told me to take care of myself, meaningfully, as I was leaving. Those gestures had the best of intentions, I'm sure, but I left feeling pitied and sad.

I'm dwelling on it too much. It happened, it was out of my control, and I need to get over it and realize that I may never have a "normal" family gathering ever again. And I think that is why this has hit me so hard. Yes, it was embarrassing to melt down like a child in front of half of my family, but the worst part is that I am sure it will happen again. Unless I go totally reclusive and move myself into a bubble, I will continue to encounter triggers en masse. Those lead to headaches, which, when not dealt with promptly and appropriately, lead to me freaking the fuck out. I have to accept it, and move on.

I will not let my head win. I will leave the house at least once a week. I will not miss major family functions. I will take care of myself, but I will push myself, so I never take my limits for granted. I will never stop trying.


Tuesday, April 14, 2009

Earplugs: Stop the Noise

The noise is clamorous. I can't tell one from the other. Voices, cars, animals, rain, they all sound the same when it gets loud. They overlap and assault me. Individually I might be able to fend them off, but all together? I don't have a chance. I can't escape so I scramble through my purse for the only protection I have. My fingertips graze the soft foam and I grab too quickly, come up with a handful of nonsense in addition to my only savior. As I sift out my keys and a chapstick and start rolling the plugs into an ear canal shape, I start to feel the panic and am afraid of how bad it can get. I stuff one in each ear and just as I think I can't take the noise any longer, that I'll cry or scream or lose my mind completely, the earplugs expand. Quickly, but much too slowly, they fill my ears and stop all sound for a second or two. I exhale. A moment later I can still hear, but like a faraway echo. The noise is no longer a threat and I can breathe again.


Saturday, April 11, 2009

Being a Real Girl

At 30 years old, quality of life issues have become central for me. I have trouble leaving the house. I see my immediately family and close friends rarely more than once a week and I am usually in pain and irritable during visits. Sometimes I can't feed myself, or hold a conversation, even quietly. These limitations are harder on me than the pain. Being with my family painlessly, the freedom to go for a walk to the library, having a job, these are all things that have been very important to me and they are all things of the past. I am learning to accept it. I can't change it, so I have to adapt to survive.

Recently, hobbies have been keeping me feeling like a real person. Container gardening in my south-facing bay window and knitting have been keeping me productive. Even in my worst hazes of pain, I can manage to water once a day and knitting is surprisingly easy, even when I can't think and can barely open my eyes.

When I wake up with a headache, miserable and angry, I can't help but lighten up when I see new tomato sproutings. And feeling depressed about being so non-productive is pointless when I have a small pile of knitted squares to prove I have been doing something. Perspective is everything.


Monday, April 6, 2009

Support System

After two years of constant headaches, I got my first article from a family member recently. It surprised me, pleasantly. There wasn't any information in the article that was new to me, which isn't shocking as my google-fu is out of control and borderline-obsessive, but it's the thought that counts. And the thought made me feel loved.

I've heard of people in my or similar situations feeling uncomfortable with unsolicited advice, its nature and frequency. While I have experienced a few instances of people making obvious suggestions based on inaccurate assumptions and did indeed find it irritating, I LOVE it when someone shows interest in helping me cure my woes. I am open to all ideas and want to try everything until something finally works. Except maybe bloodletting. Leeches? No thanks.

I rarely get suggestions from my family or friends because, for the most part, none of my family or friends has any idea what I deal with day-to-day. That is mostly my fault. I tend to sugarcoat the truth. I don't tell people that I spent the whole week in my robe on the couch with an icepack on my head, incapable of even microwaving food. I may mention that I had a bad week, if cornered. I don't like talking about it. I'm embarrassed and horrified by what my life has become. I don't want anyone to know about it! So, no one knows about it and I lament because I feel alone. Self-sabotaging martyr is what I am.

My very supportive boyfriend does his best to help me cope, physically and emotionally. But he is only one man.

My easiest and most reliable source of support in the internet. If I am feeling desperate or need help with a weird symptom, I can hop on the net and go searching for help. (I'm lucky that the computer doesn't trigger my head too much. If I close the laptop lid at the first symptom and leave it alone, I can usually avoid the repercussions. It's all about moderation.) I read a lot of blogs and newsreels and do a lot of googling about headaches and migraines. There are a lot of people out there having similar, if not the same, problems. They report a variety of symptoms, and even more varied treatments, some with total success and some who suffer for their lifetimes. Encouraging and disappointing at the same time, god bless the internet.


Wednesday, April 1, 2009

Mnemonics are Fun!

Settling on an acronym to help me make my head diary entries more informative was easier than I thought. My first instincts seem to have been right in keeping it as simple as possible, and this is what I came up with.

The details I've been neglecting have been regarding sleep, what I eat, the weather and the timing of my symptoms. So, the acronym I've come up with is SWETS, Sleep, Weaher, Eat, Time to Symptoms. Ideally, I need to be breaking everything down by time, when I get dizzy versus when I feel nauseous and all that, but I know I can't keep up with that. It's a challenge just to bathe myself once a day, some days. So, I figure, recording when the symptoms start in the day is going to be enough, until I am capable of more.

Questions to ask myself daily:

How's the weather? Sunny? Temperature? Humidity? Smog?

How'd you sleep? And for how long? Coma, interrupted z's, no sleep, 2200-0800, etc.

What have you eaten in the past 24 hours? Include serving size or nutritional estimate, if I remember.

How long from waking did the symptoms start?