mybeautifulmigraine

It’s the New Me. And I have to be okay with that…

https://migraine.com/living-migraine/i-am-no-longer-the-person-i-was/

Doc appt day!

#WaitingRoomShoePic

Asked the kids to surprise me by cleaning up before I get home.😂

If you’ve ever had a migraine, you know it’s not just head pain. Actually, the head pain is only a tiny part (oh, if ONLY it were a bad headache!😔) There are so many other unpleasant symptoms: nausea, vertigo, difficulty thinking or concentrating, trouble regulating your body temp, mania, lethargy, terrible skin, light and noise sensitivity, and much much more!
I’m treading rough waters today. I will lay back my head and open my arms to float on the waves. Close my eyes. Listen to the sounds on the wind, feel the water and the air and the sun. I may only float, but I refuse to sink.⚓

#ChronicMigraine

“How are you?”

“I’m fine, how are you?”

But I’m not ‘fine.’ I’m so not ‘fine.’

I am depressed. I am anxious.

My neurological system is hyper stimulated and on rails all the time.

I am hopeful. I am defeated. I am grieving.

I am so tired of being sick and talking about being sick and thinking about being sick.

I am full of tremendous guilt and I question myself, my choices, my thoughts, my reality every hour of every day.

I am angry … at myself and at my illness. I am struggling between acceptance and fighting.

I am so sad and so sorry that I can’t do for myself & others what I used to do. I am so tired … a kind of tired beyond exhaustion and lethargy and extreme fatigue … it’s physical and emotional exhaustion and not even a thousand years of sleep will end the extreme fatigue.

I am broken … physically and mentally. I am so strong and resilient.

I pray, but I don’t know exactly what to pray for. I am closer to God than ever. I am so very alone … lonely in a sea of loved ones and caring people.

I am so so sorry for my shortcomings and for my sickness. I cry … a lot. I laugh … a lot.

I can’t go on. I just cannot. I will never give up. I am envious and reminiscent. I dream. I focus on the each moment and remember to love and be present. I am overwhelmed and confused.

I’m hungry. I’m overweight. I’m nauseous.

I am in pain all the time … simmering pain to unimaginable pain.

I feel betrayed. I am grateful this is happening to me, instead of another.

I am a mess. Most times, I have no energy to care for myself and my life.

I am tired of seeing piles of laundry that I can’t take care of …and dirty dishes …and dirty floors …and messy closets …and dust …and clutter that I can’t possibly tackle. I am shackled. I’m a prisoner.

I’ve grown roots into my bed. The only place I can rest is my bed. My bed used to be my happy place. And now it is my life sentence. I cannot move. I can stretch my roots, my body parts, but I stay here in fitful recline.

I hate pills. I hate medicine. I am so tired of swallowing pills. I owe the small reminent of my active life to medicines.

I hate my body, brain and head.
I am so tired. I am so unbelievably tired. Every cell of my body aches or hurts or stings or throbs or burns.

My soul feels like the seaside, every wave of the ocean takes a little more of me out to sea. I’m chipped away a piece at a time. I’m naked and exposed and deformed and horrifying and ugly. I am a shell of a person. Just a carcass. I am infinity. My soul is everywhere.

I don’t know how I’ll go on. I rally. I put one foot in front of the other. I smile. I’m totally ‘fine.’

#ChronicMigraine #ChronicIllness #invisibleillness #speakyourmigraine #ChronicPain

Good morning world! It’s a thousand degrees in Austin Town and my beautiful migraine is only a lower simmer… still there, like a constant chattering passenger in my body and brain… but it’s “quieter.” Shhhh. Botox for Chronic Migraine is a little magic, I’m 8 days post injections. Another doc follow up appt today.

#ChronicMigraine #WaitingRoomShoePic #ChronicIllness
djk #MyBeautifulMigraine

https://themighty.com/2018/08/questioning-illness-social-media-vacation-photos/

I don’t take medicine to get high. I don’t remember ever getting “high” on medication. I take medicine to get out of bed, to feel like a Normal person with a bad flu. But this helps me live some kind of life.

To Everyone Who Lives Pain-Free, From a Girl With Chronic Pain

See how I saunter… 🚶‍♀️🕺

Botox Day!

So ready for a fill up today… it’s been a pretty rough summer for my fried brain. I don’t know why… the heat? The storms? I’ve been worse than usual. One greeeeeat thing is my neuro Mariah has altered my diagnoses so I can get more botox. This has been a godsend. My jaw gets so tight with Chronic Migraine that it feels like a slab of cement by botox time. Either it will break and explode or stay strong like steel. The extra Botox really softens the muscles. It’s actually noticable looking at my face.

My neuro practice is very good. They really work with me… they are always there for emergencies; I can usually get seen the same day, and they work with me when I’m ready to explore a new treatment.

However, sometimes the practice can be lacking in common sense.

Mariah has said some doozies but the very worst is the nurse. Sometimes she’s saccharine sweet, asking about “the family” and providing updates on her own family. Most of the time, however, she is downright unpleasant. I will say that Nurse Mary is an amazing stick for medications. But you never know which face she will show… it’s like a surprise party, but much less fun.

Today’s conversation went as follows:
Nurse Mary: “How long did your botox last this time?”
Me: “Only 8 weeks tops, so not so good.”
Nurse Mary: “It’s better than 4 weeks.”
Me: “This is true.” 🙄 (translation: no shit, Sherlock)

For real: #thingsNOTtosaytoaChronicMigraingeur
#BotoxforChronicMigraine

#ChronicMigraine

#WaitingRoomShoePic

https://johnpavlovitz.com/2016/02/01/things-someone-who-loved-you-should-have-told-you/

Yesterday I received another packet from Social Security Disability… informing us of the judge’s favorable judgment.

All these packets come with a self addressed envelope and the option to appeal.

Which I’m not appealing, obviously.

So… nothing new.

I’ve been disabled since Jan 2013. Filed first in April 2015. After multiple denials, I had a disability hearing with legal representation in May 2019. Notice from disability judge of favorable decision in June 2019. And now notice of notice of favorable decision in July 2019.

This is an interesting process, for sure.