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.

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.

Thanks Axon Optics! (And Some Updates)

glasses selfie oneglasses

Thank you to the wonderful people over at Axon Optics for a new pair of their revolutionary eye wear. These sunglasses are a life saver. They block out light to reduce light sensitivity during  a migraine and reduce the number of light triggered migraines.

A link to my article I wrote for Axon Optics can be found here.

Feel free to comment here or there. I am so grateful for the glasses they sent me. Please check them out and if you have the money – buy a pair. They are amazing and will change your life if you have light sensitivity with migraines.

I never expected something like this to happen. When I started this blog I never expected it to have the reach and impact it does. I know I’m helping people. Now I’m actually getting something out of my migraines. (Not that I wanted to). My migraines are paying off. Instead of suffering, I’m helping and being helped.

Now onto some more updates…

When I spent two days in bed rather than joining the rest of the world, I figured it was a sign of a flare up of depression. Today, I felt really good – better than I have in a long time. I can’t explain it – but I’m grateful.

There is some more exciting news in my life – my dog, Penny, gave birth on Tuesday to 9 beautiful little puppies. I’ll definitely have my hands full in the next couple of weeks.

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.

MHAM Day 14: Hope lies in dreams, in imagination and in courage

Day 14: “Hope lies in dreams, in imagination, and in the courage of those who dare to make dreams a reality.” Jonas Salk

This comes from a man who found a vaccine for polio, a previously incurable, devastating disease. I’m not sure how much you can compare the two, polio and migraines but the message of hope for a cure rings true for both. Polio is a virus, migraines are something else entirely. Such little research has been done about migraines. We are not looking for a cure for migraines, but rather management.

As far as the quote goes, we, migrainuers, can only dream of a cure. We dream of a life without debilitating pain. We dream of a normal life. We dream of spending more time with our families and less in the darkened, silent bedrooms, with our treatment options. I dream of a life where I do not have to take medicine where I fear a missed dose. I dream of a life where I am 100% me not not divided between who I am and who I am with a migraine. My reality is that I’m never going to get that time back and my reality is that I’m going to lose time in the future. My reality is the only escape from the pain is sleep where I dream of my normal life still being invaded by headaches and migraines. Taken quite literally, my only hope of a normal life is in the world my unconscious mind creates when I sleep. My greatest fears should not be a missed dose of medicine, or not having enough medicine. It should not be worrying about making up classes, praying for the kindness and forgiveness of others, strangers, professors, for a condition I have no control over. I should not be worrying so much about my future as a functional human being at 21. This worrying started at 13. My greatest fear should be heights or spiders, not my own body. I should be fantasizing about my future career, spouse, and children, not headache care. I should be out on the weekends, having fun – not recovering from a weeks worth of headaches. Not dreading the next one.

Maybe our suffering isn’t enough. We are such a minority. We are not dying because of migraines, not matter how much we blame them. They call it depression. We scream into the void for help only to be blocked out by the bigger groups. We are the invisible patients, we are the lost patients. We are the ones suffering from such a misunderstood and under-researched disease that instead of being put under the microscope we are thrown out the door. We have no medicine for our illness. We take depression medicine because it’s really good for headaches too. Or blood pressure medicine because it helped someone’s headaches in the clinic trails. Or something else because it turns out it helps with migraines too. Not because it’s for migraines. Our medicine, cymbalta, topamax, botox, zonegran, are all flukes. Our medicine for the treatment of our disease is just a by product. Someone came up with these medicines to treat a more in demand, more profitable, disease – blood pressure, depression, seizures and we are given it as an after thought. We suffer from an illness, a debilitating, life threatening, disease unlike no other where there is not a single medicine made just for us, for our treatment. Because we alone are not enough. Our suffering is not enough to them.

I have suffered every day. I’ve been to numerous doctors. I dream of a life without I don’t wake up with a headache. A day where I do not want to immediately go back to sleep. Where I wouldn’t dread the headache to come, that I know will come. Where I don’t have to fear the big one because I have a preventative, I have an emergency medicine that makes me feel better, not worse. Where I didn’t have to wish I could fade into the void, where my headaches couldn’t find me. Where I’m free.

I still fight, I still go to the doctor’s appointments. I’m still trying new medicine. I don’t know if that’s courageous or stupid. It has to be courageous because without it being courageous, I’m nothing but a migraine.

Migraine and Headache Awareness Month Blog Challenge Days 9 and 10

Day 9:

Brian McKnight’s Win “share with us which of the lyrics you believe”

What a beautiful song. It’s not really my usual type of music I listen to but still a beautiful song. It’s really hopeful. What instantly came to my headache was my 7th grade self, when the headaches started and the journey thus far when I heard “No stopping now / There’s still a ways to go, oh / Someway, somehow”. I hope I’m closer to the end of my headache journey then the beginning but it’s a long journey, with a ways to go yet. The chorus rings true for more than just us migrainuers, ” I’ll never give up / Never give in / Never let a ray of doubt slip in / And if I fall / I’ll never fail / I’ll just get up and try again” Anyone determined to accomplish their goal can’t give up. The last line of the chorus reminded me of the lulls between migraines where we live our lives. When the migraine is over we just go on like nothing happened because we have too. It seems almost frivolous to experience something so powerful, so painful without something physical to come out of it. All I have at the end of a migraine is an empty blister pack that once had an imitrex.

Day 10:

Write about any ways you have to find hope on a dark day.

I find hope in the idea of tomorrow. Tomorrow is this magical place where everything is done and I feel fantastic really to tackle the next thing that life throws at me. Tomorrow might not be 24 hours from now like the word denotes but just when I feel better again. I might not feel better in 24 hours from now, it might be 48 or 72 but I will feel better than my lowest point at some point, and then I will be invincible.

Tomorrow is also an out for me. Everything can wait until tomorrow. The world is not ending tomorrow, it can wait. That paper can wait, that reading can wait. I use to run myself ragged, staring at pages with my mind blank. Forcing myself at a crawling pace to finish that reading and writing as quickly as possible so it would be done. That’s just torture. I would punish myself on top of feeling like crap. Now it all gets pushed to tomorrow and I take care of myself first.