Start each day with Hope & a Grateful Heart

This is the last day of #MigraineAwarenessMonth 2017 (and I can hear many of you cheering – “Hooray! Donna’s stupid woe-is-me posts will FINALLY end for at least a little while! Dang, I wish she would SHUT UP!”😂)

I do apologize for the copious amounts of migraine awareness I pile on; it’s true that I’m not looking for pity… Just hoping to raise awareness of the multitudes suffering an invisible illness in silence. Of course everyone – EVERYONE – has their “thing,” their struggle, their burden to bear. Mine is no more or less… And struggles should never be compared (because there never is a comparison – everyone is an amazing individual).

I love to start each day with hope and a grateful heart. My life is rich with blessings: amazing friends, wonderful children, etc. I am full of Hope that migraine treatment will advance in the coming years – my episodic migraineur son will have options not available to me now. And I look at all the treatment I have access to that my parents and grandparents did not. Triptans only made their way into the pharma world in 1992! Now there are so many to choose from!

With a grateful heart full of hope, I wish you all a beautiful day full of precious moments to cherish!💜❤️💜
“Hope is the thing with feathers

That perches in the soul,

And sings the tune – without the words,

And never stop is at all…”
#MigraineAwarenessMonth 2017

#MyBeautifulMigraine

#ENDStigma for Chronic Migraine & Chronic Illness

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June 29: Chronic Migraine Awareness Day

Spread awareness & END stigma! Chronic Migraine is a real struggle for millions of people – we look “fine” even though suffering from 15+ migraine episodes a month. That’s half a month – ripped out of the calendar and thrown in the trash, so disabling is migraine!! It’s NOT all in our heads. 💜❤️💜

#MigraineAwarenessMonth 

#ChronicMigraineAwarenessDay

#ChronicMigraine

#MyBeautifulMigraine

#PatientsNotAddicts

#ENDstigma of Chronic Migraine & Chronic Illness

#BotoxBabes for Chronic Migraine… Explained

My Botox for migraine prevention is in T minus 5 days. The last 2-4 weeks before the next procedure of 36 injections to forehead, sides and back of head, jaw, neck are usually quite difficult. My “juice” runs out. Botox is the best preventative I have ever used for migraine. It decreases the severity and length of my migraines and makes my medications work better. It does not magically cure me, by any means. 

I never miss Botox day. Ever. I never reschedule it. Ever. I’m never late. It is one of the most important 4 days for me of every year. 

Insurance will only cover the procedure every 12 weeks. Perhaps someday a migraineur may be permitted more frequent injections, but that day is not here yet. The procedure is not performed by a plastic surgeon – instead it’s done by a neurologist or migraine specialist and it doesn’t help with wrinkles. Some “rounds” work better than others.

I prefer the fact that Botox is injected into the muscle, unlike oral preventative medication that requires your body and organs to metabolize. Also, oral preventative medication is laced with unpleasant side effects (weight gain, cognitive problems, numbness in extremities, unstable moods, unpleasant taste in the mouth – to name just a few).

Chronic Migraineurs are the only people I know who greatly look forward to multiple head injections…we are desperate for relief. For those of us who it benefits and are in the Botox regimen, our injection day is a SACRED day. It’s our Christmas morning. I have been receiving Botox for migraines for over 6 years now. It is not the first line of approach for Chronic Migraines (defined as 15 or more migraines a month for over 3 months)… Because of it’s expense, oral preventative medications are always attempted first. If they fail for the individual, a neurologist will attempt to get insurance approval for Botox for their patient.

#BotoxBabes for MIGRAINE

#MigraineAwarenessMonth 2017

#ChronicMigraine

#MyBeautifulMigraine

#patientsnotaddicts

#ENDstigma of Chronic Migraine & Chronic Illness

Summer dayz

My fucking head fucking hurts. It’s not a killer migraine…it’s only a 6. So I’m trying to conserve meds. I feel up to staying here on my bed with ice. Zero energy. Pain.

My kids are out of school. The older ones are out but I wish I was doing something with my 13 and 15 year old. What a looser mother they have. When they’re in school, they can see normal people and don’t have to witness this shit.

What am I feeling??? Sorry for myself? Am I acting the victim? Should I just try harder? Wtf? Give it to me straight. I feel like I bring so much awareness to Chronic Migraine that people in my life are afraid to do anything but handle me with kid gloves.

Pity party out.

My day:

I had one doc appt this AM with Megan.

She told me about a Chinese essential oil that helps with topical pain:

I used it on my temples while I was there, because the weather is like this…and my head is pissed. Of course.

After Megan, I picked up a few things at Trader Joe’s and came home.

And now. Lying on top of my covers. Lethargic and hurting. Puttering… wandering… some laundry… organizing a kitchen cabinet… changing my ice packs.

This is so stupid. And sad.

​My Job, the Chronic Migraineur

by D KOBAYASHI
My job doesn’t pay…in fact, my husband and I spend thousands upon thousands of dollars on “my job” every year – lost work as an RN, procedures, therapies and treatments not covered by insurance, new supplements well-meaning people swear by, expensive devices and treatments that might help. 

I work every hour, every minute, to beyond exhaustion. There is no coffee break, no downtime, no weekends, no vacation. No time off despite excellent behavior. And yet – my job doesn’t look like a job to most people. Everyone who sees me thinks I’m a-ok as I pretend to be Normal. I even spend energy faking it for my family. They have no idea how hard I work to appear better than awful. And I want so much to be Normal. I dream of waking up one day – and all of this struggling will just *poof* be over.

If you’ve ever experienced pain so long and so severe, that you prayed you’d die, you know what I’m talking about.

It’s been a ten year string for me. And despite how I focus all my energy on being Well, the physical abuse and mental stress I inflict on my body while trying to “appear well,” has definitely been part of the cause for adding more comorbid diseases. Hooray. It’s like I got a “raise” or “promotion” with my job!

Normals don’t know what to do with Chronics. They don’t get it – unless they GET it. We appear lazy, whiny, unreliable, boring, insincere, anxious complainers. I’ll freely admit my former self didn’t understand. 

There’s no kicking CM, RA, etc and booting it our of your life. There’s no beating it. No remission. No cure.

So…we are just … 1) boring and 2) annoying and 3) weird.

I think the only way to explain Chronic to a Normal is in analogies… Imagine having the flu everyday of your life…go to bed with the flu, wake up with the flu…sometimes it’s only aches and pains and a runny nose, other days it’s ALL FLU. Then imagine having to climb Mt Everest with that Flu. Everyday. Mt Everest represents taking a shower, making a dinner for your kids, cleaning a bathroom, doing wash loads, driving to a doctor appointment (where they give you the GREAT news that they can MANAGE your illness, but there is no CURE. And the meds they want you to take bring on side effects often worse than the illnesses themselves).

Freaks. Just Freaks. Circus Folk. Half alive, living Half-Lives. A lump. A burden. A shadow of my former self, a shadow of a mother, a shadow of a wife, a shadow of a friend, Yeah, staying home is great fun – staying home, being disabled – it’s the job I dreamed of having forever.

I’m good at my job. I’m great at my job. I hate my job. I hate how it robs our family. Just robs us of everything, every day with no shame or remorse.

Sometimes…sometimes, I am so done. I want to quit my job.

#MAM 2017

#MyBeautifulMigraine

#ChronicMigraine

#InvisibleIllness

In Trouble

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.

The Putter…and the Wander…the trying to Ignore…the Faking

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…