Holy Migraine… and Painsomnia!

You know those migraines that remind you that you’re truly a migraineur? Like, all along you’ve been getting regular migraines and suddenly a whopper imbeds itself in your brain? And you have a sudden realization: Damn, Batman, I really am a Chronic Migraineur!

Today’s has been swinging with a gut punch all the day long: I woke at about 11 am with her. She’s taken state in my right frontal lobe – deep. I’ve had a myriad of well-wishes: Is your botox working yet? (Administered 5 days ago, 37 days late of treatment date). And it makes me feel awfully sad to answer honestly: Thank you so much for asking, but, nah, my head is just a bear and botox normally takes a week or two to “kick in,” and I’m so late on treatment that I don’t anticipate I’ll get the same kind of response as usual… botox is cumulative; I’ve got to get into normal on-time treatment, so I anticipate I won’t see real relief until closer to my next treatment in September, God willing. It is genuinely touching that so many people have followed my trials and followed my advocacy. So very heartwarming. The world is full of good people and kind souls.

I stayed in bed today. I changed my head ice wraps every hour. I rotated my medications, but did not overload. I found the most relief with that one med we Chronic Cats are not supposed to use anymore due to high incidence of possibly causing rebound migraine.

But darn it all, if Fioricet isn’t the most reliable medication! I can count on it, working almost 90% of the time! Maxalt works about 55%, Ubrevly about 60%, Reyvow (still assessing this one since I haven’t used it that long), about 60%.

When I had some relief, I was able to work on baby shower plans, help my husband with honey-do items, and cut his hair! Saucy!

Today’s migraine has been brought to me by extreme weather heat, allergies, and a fun 1.5 hour dinner last night with friends in a restaurant! My husband and I are working intentionally to foster our relationships with dear friends: not only are our friendships too precious not to nurture, but it gives me the amazing treat of dressing up like a human being, relishing our Empty Nest phase, socializing and enjoying a nice meal – the leftovers I can eat for days! Such a major WIN for a Chronic!

I also had most of a gorgeous frozen strawberry margarita – and alcohol certainly makes my migraine events worse.

So now… it’s 4 am and I cannot sleep due to Painsomnia… I’ve taken appropriate medication, have my green light on, and I’ve fired up the Cefaly. Hoping this will put me to sleep… healing sleep.

And I will probably over sleep tomorrow. My husband will wake up at 8, feed the dogs, make coffee, get ready, and give my head a tiny kiss before he heads out to a day in the office for work. I’ll find a cool cup of coffee on my night table when I finally open my eyes and rub away sleep. He is truly the best!

Will I wake up without migraine tomorrow at about 11 am? Will I be able to get dressed and made up while enjoying my favorite podcast? Will I be able to work my biz a little? Work on the baby shower a little? Clean the house a little? Oh what a glorious accomplishment that would be!!!😍 With or without migraine, that would be glorious to have the energy to be that productive!

I’m going to sign off and try to sleep with my zinging and intensly tingling Cefaly and try to sleep now! The TV is on with only the faintest white background noise, and a #BOTOXforChronicMigraine commercial was just played. Oh, the very ironic anecdotes of my Chronic Life!

Peace and love to all who struggle daily! Keep fighting for a Life to Live!

I’m in pain but I’m SMILING

Today, the sun came out after storms last night and this morning. I’m in pain, but I’m breathing, I have a heartbeat, and I WILL smile. I’m thinking of my wonderful husband, amazing 4 kids, beloved daughter-in-law, and one New Thought of God grandbaby on the way…

I’m in pain, but my botox is in my head muscles and while it will take 2 weeks to work, I’m optimistic… very optimistic.

Well wishes to ALL!

Get along, on down the road,
We’ve got a long, long way to go.
Scared to live, scared to die,
We ain’t perfect, but we try.
Get along while we can,
Always give love the upper hand.
Paint a wall, learn to dance,
Call your mom, buy a boat,
Drink a beer, sing a song,
Make a friend, can’t we all get along?

Kenny Chesney

#cabi #cabistylist #cabiredux #ChronicMigraine #ChronicMigraineAwareness

Botox FUBAR

The botox had not arrived from my insurance’s specialty pharmacy.
I went to the office anyway. Marc came with.
I said I could lie down in the waiting room and wait for its arrival, but I couldn’t take anymore. I’m 37 days late on treatment. I don’t eat much; I’ll just camp out here.⛺️
I cried when Dr Pokala and Cammy took me back and injected me with samples of the office’s botox. God bless them.
We are on our way home and I’ll climb back into bed w ice. I just have to wait for the botox to start working and climb back on the hill of treating #ChronicMigraine

#WaitingRoomShoePic #BOTOXforChronicMigraine

Thank you all for your encouragement, support and prayers.💜❤️

No botox

I am 33 days late on my botox treatment… I’ve never been so late in my 12+ years of #BOTOXforChronicMigraine treatment.

Just heard from the botox coordinator that my shipment did not arrive at the office today for my scheduled appointment for tomorrow.

If I could lay down and die right now, I would. I can’t understand how this is happening to me. I know this will all be a page in my history someday, but it doesn’t seem half fair. I can’t see through surviving this trial. They have broken me.

The science of GREEN LIGHT

Today is another horrid migraine day. I think I’m in prodrome… the exhaustion is thick. I describe it as being made of concrete and moving through cement.

Rose this AM to quickly celebrate Father’s Day. So nice. My husband Marc is the BEST DAD in the world to our children.

Then I went back to bed. With my GREEN LIGHT.💚

“Greenie” sits next to “Salty,” my Himalayan salt lamp on my night table. Himalayan salt is supposed to help migraine as well.

Green Light has some research to show that it really helps with migraine… specifically @allaylamp

https://allaylamp.com/

I couldn’t afford one of Allay lamps. They used my photos at Retreat Migraine but would not offer me a coupon. Lol! So, my loving husband bought me an affordable dupe from Amazon for my birthday a couple of months ago.

Another day… migraine has taken off my big calendar of Life and thrown in the trashcan.

I also really like my GREEN sunglasses from Zenni… I think these help with migraine as well.

The COST of Migraine

I rested several days for yesterday; I was so excited to LIVE. I took a Reyvow Thurs night and woke up OKAY on Fri morning at 8 AM! Drove to my daughter-in-law’s to float the San Marcos with her and her friend. It was absolutely sublime!

After, I made it home to quick shower off turtle river smell and dress for dinner with our good friends Meg & Albert at Ling Wu.

We had drinks and AMAZING cuisine and wonderful togetherness.

When Marc and I arrived home, it was time to start treatment for the migraine that would come.

Today I woke at 9:30. It’s 1 PM now, I’m medicated, have ice on my head, and heat on my sciatica/back. I will not be moving from this bed.

…and it got me thinking about the COST of Chronic Migraine… do people understand the COST?

The yearning for proper treatment

I’ve been working on this for 44 days.

Called insurance on my own😭 Spoke with specialty pharmacy twice😭
Went on to spend one hour on conference call with Neuro Botox coordinator and insurance specialty pharmacy… it should be soon. I was weeping for most of the call😭 I appreciate ALL the helpful messages and prayers. I will make it through this… 80% sure. They will fit me in early next week.
If there was ever a test to see if #BOTOXforChronicMigraine is important for my #ChronicMigraine treatment, I’ve passed.
I don’t want to die. I just want to LIVE😭

When your #BOTOXforChronicMigraine is so late, you’re dying

I might just die here in this bed. Or run into traffic. It doesn’t feel fair. I don’t want to die. I want to LIVE.😢

My neurologist of 10 years
retired in March. I started
with a new, very wonderful
neurologist right away.
I’ve been in treatment with
BOTOX for Chronic Migraine
for almost 15 years and was
due for botox on 5/18…
The new neuro has been working
with my insurance to approve my
treatments, and I’m still waiting.
I feel like death every single day. I don’t know how much longer
I can wait. Speaking with my insurance and specialty pharmacy
just gets me nowhere. Have sent an sos message to my new
doctor. Why does this have to be so difficult?

#ChronicMigraine #InvisibleIllness #BOTOXforChronicMigraine
#MigraineAwarenessMonth

Migraine Awareness Month 2023

Episodic Migraine is common. Most people have, or have had, or know someone with MIGRAINE.
But why do some migraineurs become
CHRONIC (15 or more migraines a month
for 3 or more months)? Often, this is a
consequence of inadequate migraine treatment. It is crucial to manage this
neurological event PROACTIVELY & AGGRESSIVELY. It’s important to medicate appropriately at the START
of the event. Waiting is not recommended. If your migraines have a new and unusual symptom, following up with your medical provider is critical.
Migraine is most frequently a hereditary ailment, often starting in childhood or puberty. But, if you have no hereditary factor, a full workup is in order – you could have an anatomical abnormality.

Chronic Illness Truth

Truth is humbling and embarrassing. You get it when you *get it.*

I remember in my later 30’s when I felt my normal life slipping away, a Saturday where I suddenly could not complete my weekend to do list – collapsing in bed face first I wailed dramatically to my Marc: “What is happening to me!?”


#ChronicMigraine #ChronicIllness #InvisibleIllness #CMAware #ChronicMigraineAwareness #RA #ChronicPain