Life Update

I got a job, like a real life job. I’m working in the deli at the local supermarket. It’s not hard but it’s a lot of time on my feet and a lot of repetitive tasks. I’m too short to really see over the counter so I have to stand on my toes a lot. My legs, feet and toes hurt more than anything else really. My head has been quiet – I guess only one thing can hurt at a time. I did have one headache at work – stress induced.

I keep being asked if I’m okay at work. I guess I have that slight “not home” look perfected. I always say “I’m fine” and move onto the next task.

Some people are asses. Some are really sweet. It’s customer service.

School starts next week. I have two professors I’ve had before. They both have given me two of my lowest grades so far. I’m a little worried but now I know what to expect from both of them and to do better. I’m worried with working and studying and my head. It’ll be the first time my head isn’t at least a part time job. I’ll be going to school full time and working at least weekends and maybe evenings.

I’m trying to be optimistic but am still anxious at the same time. I have a tendency to crash and burn.

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Thoughts

I feel more like a broken record than ever before.

I have mixed feelings about it. I’m happy that I’m voicing my pain, my discomfort. I’m not only acknowledging my pain, I’m acknowledging that there is a problem. “I don’t feel well.” I’m saying more than just that. I’m saying that I have a problem, that it’s not normal. I shouldn’t be this way.

But, at the same time, I feel like nothing is changing, like I’m not doing enough. I don’t know what else I can do though. I take my medicine, I sleep, I watch what I eat. I don’t know what I else I can do but feel I should be doing more. This is me feeling like it’s my fault, that I need to fix this some how. I’m just frustrated. I’m so frustrated that’s it’s been so long and nothing has changed and I’ve been trying so hard. I don’t know what else I can do.

I have people who care enough to listen to me say these phrases over and over again. I’m grateful for that.

But – like when you say a word over and over again, it loses it’s meaning; the phrases lose their meaning. I’ve experienced it before – when people stop believing. I’m scared of that, another invalidation of my pain. If I don’t say anything, then I don’t know – I don’t have to worry about them believing me or not. I don’t have to be judged for my management methods (or lack thereof). I don’t have to worry about the other reactions. I think I want sympathy but that doesn’t always happen. I’m scared when that will happen. It’s beginning again.

I say I don’t feel good and I get this look. It’s that ‘you always have a headache’ look. I know they can’t do anything but saying something just helps – it pulls me out. But I get a look, it’s a look of annoyance. I don’t know if it’s at me or my head or both. But me and my head are the same. Annoyance with my headaches is annoyance with me. Sometime it’s sympathy, sometimes it’s not. Maybe they’re just as frustrated or annoyed they can’t do anything either, or if they’re annoyed with me.

It’s not my fault, it’s not my fault, it’s not my fault. But I get all of the blame. I deal with all of the consequences. I have pain but I feel like I can’t talk about it without being annoying, without bothering someone (who isn’t being paid to listen to me). I feel like I’m bitching. All problems are valid, and I can’t say mine is worse than someone else’s.

I’m a broken record.

I don’t feel good. My head hurts. I don’t feel good. My head hurts. I don’t feel good. My head….

WE KNOW. i know.

I’m frustrated. I’m exhausted.

I just want to be better.

Vacation Cut Short

We all agreed.

Yes.

My sister all ready went over to the main office to discuss staying another night at the hotel. While walking on the boardwalk, my parents text me, suggesting we all stay another night. The weather is beautiful, tomorrow will be beautiful too. We discuss it eagerly, all very keen to stay. It’s decided.

My alarm goes off reminding me to take my pills. I packed up my precious medicine in a tiny water proof, sand proof, case, inside a tiny wristlet, stuck inside my bigger purse. I take out of the blue case, open the compartment and they spill out into my open palm. I only have enough medicine for one night. It wouldn’t be a big deal if it wasn’t for the migraine medicine. I can skip a night of birth control, I can take one of my sister’s metformin, I can skip the magnesium supplement but I can’t skip the cymbalta.

I flash back to the fall when the pharmacy messed up, leaving me with out medicine, leaving me desperate for something to be done. Stunned into idleness, left in disbelief, acting too late. I can hear my screams echo in my mind as I dealt with the withdraw pain. Screaming into my pillow was the only thing to distract me from the pain.

Suddenly, sitting on the floor of our hotel suite, I feel guilty. If I didn’t come, they could stay longer. If I wasn’t sick, they could stay longer. If I didn’t depend so heavily on this medicine, they could stay. We could stay. I swallow my pills with water. They always leave a bitter taste in my mouth.

“I don’t have enough medicine,” I tell my sister.

“Okay,” she says.

“We can’t stay,” and it’s my fault. 

They all reassure me it’s fine, that we will leave tomorrow afternoon as planned. They’re all so understanding – it makes me feel worse.

Migraine Simulation

I have mixed feelings about Excedrin. I’m always a little skeptical of migraine products – their use, their effectiveness, their cost. Excedrin can be a dangerous thing if misused. With the combination of medicine – 250 mg Acetaminophen, 250 mg of Aspirin and 65 mg of Caffeine, people can often take too much of this medicine. More than 2 pills in a 24 hour period is overdosing which will lead to rebound headaches. Rebound headaches often cause the sufferer to take more headache medicine creating a vicious cycle where no relief can be found without withdraw. This isn’t the company’s fault – it’s the consumers misuse.

A couple of Excedrin’s products make me raise a skeptical eye brow. They make numerous headache/migraine products. The mild headache commercial makes me cringe. My “everyday” headache is not something that Excedrin can treat. This woman’s mild headache could be banished with the loss of her two annoying kids. The “Mild” formula is 325 mg of Acetaminophen with 65 mg of Caffeine.

The “Extra Strength” formula is the exact same as the “Migraine” formula. Both are 250 mg of Acetaminophen, 250 of Aspirin, and 65 mg of Caffeine. There is no difference between the two but are two different products? Okay. This annoys me. This adds to the stigma. They’ve re-branded something for bad headaches for migraines. A migraine isn’t a extra strength headache. There is nothing that annoys me more than the stigma that a migraine is a bad headache and something OTC can cure it. If Jordan Sparks has migraines, Excedrin Migraine isn’t going to cure it without some prescription help.

BUT! Excedrin has done something pretty cool.

Using Oculus Rift,  Excredin has created a virtual migraine. Well, the aura. They focus on the aura. It’s impossible to recreate the pain, most of the sensitivities, and nausea. The aura is really a vital part of a migraine for a lot of people. The aura is just the storm on the horizon but they can be destructive. The loss of vision, and impaired vision can wreak havoc on peoples lives, and that’s before all the pain. They are able to recreate the disorienting feeling of a migraine aura.

The people in the video, two gentlemen, can’t last with the simulation.

It’s something. It’s a start.

I hope that this experiment can open a discussion on migraine symptoms – that it’s not just a headache.

MHAM: Days 19 and 20

Day 19: Kelly Clarkson’s Stronger

What doesn’t kill you makes you stronger, stronger
Just me, myself and I
What doesn’t kill you makes you stronger
Stand a little taller
Doesn’t mean I’m lonely when I’m alone

I really like those lyrics. For the longest time I felt so isolated with my pain. I didn’t feel stronger for a long time after the attacks but now I do. Before when I was isolated, I had a hard time feeling better after the attacks, I just felt weak and defeated. Now I’m stronger, more hopeful. Just because I’m alone doesn’t mean I’m lonely, I have a ton of friends and supporters who will help me through the storm.

Day 20: Role Model

Everyone I’ve met with headaches and migraines are a huge inspiration to me. They all continue to blog through the pain Raising awareness rather than suffering alone. They are beacons of hope in the dark. They keep the light on for other wayward migrainuers, welcoming anyone with warm arms and advice. The migraine community continues to inspire me and bring me hope every day. When I’m feeling down, I know all I have to do is shoot someone a message and I’ll receive out pouring support.

I love you all and I hope you all know what a difference you’ve all made in my life just by having a little blog.

MHAM Days 17 and 18

Day 17: Hope rises like a phoenix from the ashes of shattered dreams.

After the migraine breaks, I don’t feel like a phoenix. I feel more like an old ship that’s just come out of a hurricaine, drifting towards port. I feel tired, worn down. I feel creaky. I don’t feel like I’ve been reborn until after I’ve eaten and slept. That’s when I feel the best. I feel unstoppable, and fearless. I just survived my worst and now I’m ready to be my best.

Day 18: Share what your doctor has said to you that give you hope.

It’s not one specific thing but my doctors have had an air of confidence to them. It’s not a cocky confidence but one that promises me their best in getting me to the best I can be – which gives me hope.