Self Advocate

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2 years ago today…

*** Erika wants to know “What are u wearing?” Thank you for the well wishes. Why bother posting at all? Just scroll past…Keep scrolling.***

***She also will never answer me. There’s only *so much* some people can give a shit about.***

*** Some people are just mean***

And I should stop posting migraine info and pics. It just makes people uncomfortable. And I wouldn’t want that. Awareness vs people’s comfort.😢

Stigma: just SHUT UP about it. 

Stigma is so affirming and validating.

Friends. Best friends.

Friends. Best friends. I wonder who needs them. I post too much of my pain on Facebook, I guess. I woke up with blinding 9 migraine at 07:30. Just blinding. Every movement spiked me to a 10…But I had to move…Had to get ice…Had to take migraine medicine. Stayed there still for an hour and a half. Gripping Marc’s shoulder every once in awhile.

Eventually I was down to a 7-8. Insanity. I was able to do some work on FB and catch up with my friends’ lives. I didn’t want to mention the migraine…So I found a poignant picture. I do love migraine art. I think everyone is aware of that. Art is a way to create and process pain. 

So I posted only this:


****

I’m “doing it wrong” according to Erika. And she would know, she survived breast cancer! A whole year of her life was breast cancer. She would know.

Thanks for the support. I’ll just shut up about my pain. And here are some more images:

I did it!

Took a 45 min walk today with my neighbor friend Jill. She suffers from Chronic Migraine too. She asked me Monday and I couldn’t schedule til today (Wed). Which is hilarious and so typical Chronics. I woke with a migraine (Austin mornings are cloudy and moist and hurt). The pain lowered with sleep and meds as the weather burned off. I was able to meet Jill just a half hour later than our original time.

Jill is super sweet and very interesting. She has a son Ken’s age, a daughter a grade above Corey and another daughter a year behind Corey.

The hot flashes continue. So uncomfortable and I’m anxious to hear what my labs and the doc says Friday. I had to rest the rest of the day. And my feet hurt. Lol. My jaw is clenching bad. Botox in just over a week – ahh!

Made dinner tonight. Trying to save us money by only making meals – no restaurants or take out.

Living.

I haven’t been sleeping well. And I’m having ~15-20 hot flashes a day and night. But when I woke this morning, my head was not in excruciating pain! Hooray. I’m walking around with a 4-5 head and angry back @6-7. My back has been spasming everyday. A sensation very unusual.

But I’m living today! Some energy, lower pain…running errands, working on taxes, prepping dinner, doing laundry, etc. Living. 

This is me living. Moving around my sunlit beautiful home…

I checked the dining room window rose bushes. It appears mockingbirds have rebuilt their neat from last year. I think I can see 2 little eggs!

CT scan for sinuses Friday. GYN appt to discuss hormone levels (hot flashes) Friday. Cleaners and hair appt tomorrow. Walk w neighbor Jill on Wednesday! Counseling, Thursday. I will LIVE this week.

Desparating. Despairing. Depression.

Another 8-9 this morning. I can’t believe this shit. It’s killing me. I have to throw everything at it. I was able to get up at 3. Shower. Do some work at 5. And pain returns.

Christy mentioned something quite innocently…Maybe the candasartan WAS helping.😭😭😭 Geezuz Mary and Joseph…Just my fucking luck. Having said that, my cough was a bit better today. Loose and not as frequent. No violent spells.

I’ve decided to start Plexus with my friend Toni. It’s been about 2 years since my last nutritional supplement fail (Juice Plus). Toni wants some real data from me for my migraines…But I NEED to get some of this Prozac weight off. That evil stuff. So I’ll pink drink. She is offering it to me for no charge, if I like it and want to continue…She will let me pay. 🙂

And then…An email came in from a family member…

Ah, the green smoothie migraine cure. I haven’t seen this one in a couple months. Yay. Thanks. 

I KNOW she means well. I know they ALL mean well…Their suggestions come from a place of concern and love. But I wonder…Do they really think this:

Can be fixed with a green smoothie? Would they send such a pin to someone paralyzed? Someone who’d lost a limb? Do they not think for one moment?

Migraine is a neurological genetic disorder. Green smoothies don’t fix it. Wouldn’t one of my myriad of specialists have mentioned this?

I made a graphic a year or so ago:

Aaaaaaaaand look who’s at the list top? Green Smoothie!

Cupping tonight for kicks…Ya never know…

Yesterday was better.

Woke with an 8. I hate medicine. I’d like to throw it all in the toilet.

Yesterday was better. Today I’m blind. The sky is full of clouds. There’s a knife wedged into the left side of my brain. I can think and see at 20% capacity. I wanna hurl, alternating sweating and chills. Any movement increases symptoms by 50%. But the medicines need to work…They HAVE to work…I have people relying on me; I’ve made commitments to those I love. 

Chronic Migraine is so stupid and pointless. It’s 2017 and they haven’t figured out a way to stop migraine. Botox in 2.5 weeks. The last 2 weeks before Botox (#BotoxBabes for Migraine) are always so painful. Welcome to the little pain cage of hell that is my head.

Breathe…Find that inner strength and peace. That quiet, stillness, feel the love around me. Keep breathing. Pain ends.

***

Got it under some control and took Robyn to the movies (Beauty and the Beast). I can feel it still there…Deep in my head. 

But I have promises to keep.

And miles to go before I sleep.

And miles to go before I sleep.

We got froyo after and went home. Ran an errand to a friend’s house. Harder to think. Harder to drive. Harder to concentrate. The pain…I can still feel it. It makes me clench and distracts my thoughts. I’m coughing today. But it’s loose and less violent.

Marc worked from home today. He’s finished his deadline at work and has put in so many weekend hours. He took the boys to Logan. And is arranging for pizza tonight.

It’s after 6. I’m in bed with ice. Ken needs a haircut.

Chronic Migraine is dumb.

My babies’ kindergarten hand prints. Love them. They are my life.❤❤❤❤

Creating “art” from my bed gives me some purpose.

Hope is Springing

The Bluebonnets are starting to bloom. And just like that – I feel Hope. 

There really is nothing like Bluebonnet season until you’ve experienced it in Texas.😍 

I feel some hope with my chronic cough now that I’ve seen the ENT we have a plan. I feel hope with my body now that I’m just accepting I am a bigger girl and still beautiful. I feel a tiny, tiny sprint of productivity now that I’m going through my closet to organize and purge. 

So there is some Hope springing. Also, today for the first time in many days, my head is at an acceptable pain level where I don’t need a triptan breakfast. And that is something amazing. Right there. Amazing. 

I live a secret life not many Normal people could imagine. But there are more of us than you realize. Just trying to live.

Good morning Tuesday!

My morning Facebook post:

Wicked bad migraine this morning. I was lucky my new specialist appt wasn’t until 10:20 so I could get some control over it. My back spasmed again. That’s 3 days in a row – a debilitating sudden spasm from out of the blue. Special.

Esther Cheung Phillips remembered Marc when I reminded her. She was so great. She is one of the kindest docs I know. Plan in place that I’m happy about for this chronic cough. Nasal laryngoscopy done – oh what fun! Positive attitude 👍👍👍 Of course I cried a little with her. A year and a half of Cough Hell has made me emotionally fragile.

Kids off on spring break. I hope to do something with them. And not be a complete #LoserMom. My friend took her family to San Antonio for the day Sunday and the kids to Marble Falls famous pie house for 3/14 pi day. Wow. In our case, Corey and Nick are working on their laundry and I’ve got beef in the crockpot for dinner. Marc works everyday (even the weekends) as his project deadline is fast approaching.