This morning it’s living in the left side of my brain. But there is throbbing throughout my brain. I’ve been through the prescribed medication protocol. But it won’t budge. It won’t release.
I saw a commercial yesterday where friends were sharing a beer at a pub. And I had pangs of sadness. That used to be me. I could do that for fun. Now I lie here…. exhausted and hurting. I try to stay positive. But this pain…it’s devastating. I’m in trouble today.
Oh my…my Botox is run off. Today was pretty but turned sour…a system came in. I woke with a low migraine…and I tried to ignore it, use my therapies instead of medicine. Cefaly, 3 rounds.
I puttered. I wandered. Trying to get stuff done. Distracted by pain, trying to get things accomplished. Getting nowhere. By 14:00 I couldn’t ignore anymore. Time for the triptan. Damn. Couldn’t fake my way through anymore. Able to shower, dress, more puttering. Helping my daughter pack for her trip. Interacting with my kids. Laundry. Amazon deliveries and returns (Amazon FTW since going to stores has become too huge a task).
I can see on Facebook so many friends are accomplishing wonderful things! I wonder if that will ever be me again? Maybe I will just continue my Half-Life.
One last nappie with my girl before her trip…
#MigraineAwarenesssMonth2017
It’s always exciting to do something “normal” and fun. It takes planning and determination and tempering to pull it off but there are some definite experiences WORTH it. My daughter will be traveling in a few days and I’m anxious to spend some time with her. So we went out this afternoon for an hour.
One thing I can never control is the weather. A tremendous number of migraineurs are triggered by it’s fluctuations. So much so, that my neuro has a barometer right next to the phone. The reading can tell them when the migraine patients will be calling for help.
Personally, my neurological system is so incredibly sensitive…I am horribly triggered by barometric changes, wind, sun, rain, humidity, allergens, etc. It’s just no fun. And until some genius post millennial creates an EnviroBubble (72°, 12% humidity) to encase us in, my weather migraines are going no where fast.
As Robyn and I were sitting enjoying our pedis, my head began to swell.😢 Hooray. A reminder and reprimand from my dark passenger that my head is not solely my own to live in.
I ignored it…tried to. Chronic Migraineurs spend hours and days TRYING to ignore pain. What else can we do? *Smash our heads through windows? *Slam a brick at our face? *Step in front of a bus? *Lie down immediately in the fetal position and wait for someone to do something? *Stop breathing immediately? *Take a *gasp* pill (that may or may not work, that has a stigma, that depletes us of our itty bitty baby-size monthly supply) …or…*Maybe we can just IGNORE and pretend it isn’t happening. That swell behind my eyes in the brain pan is just nothing. It’s nothing.
Exactly FIVE MINUTES later, a Texas thunder and lightening storm moved in. It was truly dramatic; big downpour, lights flickered, strikes close, etc.
I owe my head an apology. I never trust it with the weather. Never. Because everyone thinks I’m weird and crazy and it’s embarrassing. So I keep my phoney baloney predictions to my own self.
Just ignore the pain. Because your docs and society is telling you, living life without being in pain every freaking day ain’t for you. So suck it up, buttercup and ignore it. Where’s that smile?
#PatientsNotAddicts
#MAM2017
#MyBeautifulMigraine
Don’t want a pill, want a cure.
Not seeking meds, seeking relief.
Somewhere along the line, chronic pain peeps just got swept under the acceptable societal rug. Pretty sure back in the day, they just all ended themselves to end the suffering. Isn’t that a pleasant thought?
That awkwardness.
How do you talk to someone with a chronic illness, like chronic migraines? What do you say?
First and foremost, I don’t have to talk about it ALWAYS… while it’s part of me, it’s not ALL of me, by any means! Sure, I’m a freaking expert by default on the disorder, but I am so much more! I love having fun with friends, talking about our mom jobs and children, my passion for my Younique biz and empowering women, traveling, learning new things, current events, movies, home projects, medical issues, family, and so much more!
Sometimes I feel down – discouraged about the neverending nature of my illness and sometimes I want to use my twisted humor to deal with it. And it’s sooo okay to laugh about it. I do a LOT of eye rolling and laughing. It is so therapeutic! Lol.
One comment I get a LOT from others: “I get migraines sometimes but they’re nothing as bad as yours.” This makes me sad; don’t ever play down your migraine disorder just becuz you’re episodic and not chronic! If you’re a migraineur, I view you as a fellow warrior, whether you have one migraine every three months or you suffer 15 or more a month! I’m no different from you – we both have a neurological disorder that has no cure. I’d love to talk with you about your treatment… maybe there are some options available you haven’t heard of? And I’d been interested hearing how you cope. I’d love sharing with you, fellow warrior! Don’t downplay your migraines! Even one migraine EVER is one too many for any human to suffer. We deserve more research, we need more treatments, we need better medical care, we need less social and medical STIGMA, we need more understanding, we need more discussion and awareness, and we need a CURE.
Another comment I get from well-meaning peeps: “Are you still getting those migraines? I thought you were getting the botox?” or… “I saw you this morning and you looked fine!” Yeeeaaah. These are tough. First, as of 2017, there is NO CURE for migraine disorder. There are three types of treatments to help: 1) preventative, 2) abortive, and 3) rescue treatments. For Chronic Migraineurs, usually a combination of all three treatments are required to MANAGE your neurological disorder. So first and foremost, the word “chronic” means simply – it doesn’t go away, it doesn’t end or stop, but it can be MANAGED. So, yes, I get the Botox and yes, it helps and yes, as disappointing as the reality is, I still get the migraines. To the second question… darn this can be a tough one to explain. I can look “fine” even when I’m migraining. I am so used to pretending and pushing thru the symptoms just to get thru the day… it would be embarrassing to me to “look like I feel;” I don’t want to look like a freak. I already feel like one becuz of this nasty disorder. Also, there’s a good chance that when you saw me and I looked fine, I actually might have been FINE! The devious part about Chronic Migraines is they are sneaky and can be creepy or instantaneous. The nature of the disorder makes my nervous system as sensitive as a toddler with PMS. I can wake up “fine,” run a couple of errands and then – bam! – a change in temperature, a startling noise, a fluctuating hormone, or basically anything in regular life can trigger a migraine. And then – I’m cancelling on you becuz my little migraine monster is demanding my full attention. They are predictably unpredictable and sly ninjas just waiting to ambush. Frustrating making plans with me? You betcha. While I am reliable, my health is not. And it never fails to disappoint me. I feel awful letting people down and I feel awful missing out.
I do hope some of my lengthy essay can end the awkwardness.😊 Wanna chat about it? You know I’m always up for discussion! Thanks for listening and peace and love be with you all! 💜
#MyBeautifulMigraine #MAM2017
Starting with a bang. It’s June 2 and I woke with yet another migraine. This weather. Crap. Appointments all day. Shower. Covfefe. Makeup. Smile. Just one foot goes in front of the other.
Be aware. Migraine is very real. It is relentless when chronic. It steals everything: time, ability, fulfillment, your future, happiness and more time. Half-Life. We are Half-Life, just shells of people, trying to operate in a world we no longer fit in. While Migraine steals, it gives so much, even more than it takes: regret, guilt, despair, shame. It’s hard to think of facing this kind of existence for the rest of my Half-Life days….just existing as a burden to those I love.
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The picture in the middle is a favorite of mine. Becuz it’s a FAKE. A total fraud, a counterfeit. I am pretending. I was migraining off the charts when it was taken but by sheer will I would not miss this event for my husband and for myself. The smile is real in that it is heartfelt, but the migraine “medication” is only helping a small amount. I am in terrible head pain; I am nauseous; any movement and light makes everything throb.
I am the best patient to my many doctors, follow a healthy lifestyle and am medication compliant, and still the world is like a constant attack on my neurological system.
But I cannot let Migraine win and I will not stop fighting for a Life. Faith, Hope, Peace & #MyBeautifulMigraine #MAM2017
…Chronic Illness invites itself to the party. I can’t believe the pain.
Today’s migraine trigger is brought to you by Austin’s storm systems, sleep deprivation and stress letdown.
Later, storm systems, violent winds and pollen helped…
One time, in an act of cruel retaliation, a person very close to me accused me of being an addict. Chronic for a decade, migraineur all my life, such an attack was completely new to me and a complete shock. Days like today…when my brain feels on the verge of exploding and oozing out of my eyeballs, I’m nauseous and dizzy from the magnitude of pain and neurological symptoms and carrying on a conversation requires every speck of effort I have…I’m trying so very hard to be human among the Normals….and her savage words cross my mind. I remember that I would absolutely NEVER wish this on another human…but maybe she would be worth it? Maybe she’d like to experience it – for posterity…maybe she could use the experience to help her soul, to better herself? Wonder if she could tolerate it, wonder if she has the stregth? Smh. Probably not. Limited strength, forked tongue, plenty of karma.
Political crap slinging continues. It’s so obnoxious. Yesterday I read a post that accused those who chose not to discuss politics as choosing inaction. Who thinks they are entitled to decide what a person is doing just because they refuse to talk politics? Judgmental douche canoes.
Why do I have to defend myself? Leave me alone. Everyday I am active: talking with and teaching my children, writing emails to my representatives and news orgs, involved with my kids’ schools, paying it forward, and living as a good human. I just don’t put it out there – “Everyone, see what *I’m* doing!” Nor do I assume anything about other humans until I’ve walked a mile in their shoes. Most of my life, I have been immersed in caring for sick people, for addicts, homeless, for children, pregnant children, people from every ethnicity and socioeconomic level. I’ve been punched, kicked, spit on, screamed at, harassed and sexually harassed in my efforts to help. I’ve been the subject of prejudice because of labels. Marc and I have been penniless, jobless. It’s easy to look at me and say – hey, she’s fair-skinned and middle class and privledged. I have many blessings, but I am not privledged. As a young nurse with fair skin and almond shaped eyes, I sported a popular Japanese surname on my ID badge in a ward full of WW2 vets. Prejudice comes in all shapes and sizes.
If we continue with labels, we continue small thinking. And that upsets me for our children. They deserve better. This world is too small for race and prejudice. Heritage is beautiful, race is a thing of the past. Just tonight at the banquet, one of the theater boys mentioned several times that he had “come out” regarding his sexuality. And I couldn’t help thinking: I’m happy he feels free, but who cares? It just doesn’t matter. Not anymore. It doesn’t matter. And I so dream of a world where your sexual orientation, your skin color, your religion…it doesn’t matter. Only humanity matters. That world is right there in front of us…no big deal at all…just open your eyes and live it. It’s here.
NOT seeking meds.
Seeking some relief.
I don’t want a pill.
I want to LIVE.
mybeautifulmigraine 