Notice of Decision

I carefully reviewed the facts of your case and made the enclosed fully favorable decision.

Letter from Social Security Administration came in the mail on Friday, June 14. Since it was written in legal speak, I wanted to clarify with my attorney to make sure I was reading what we thought we were reading.

The judge has ruled me disabled since January 2013. This has been a 5 year endeavor for us. And as it comes to a close, I’m full of ambivalent emotions. I’m approved… and that’s great… and awful.

We hope to pay off our mountainous debt with the lump sum… and perhaps my monthly funny money will keep our ends meeting. A family of six, kids in college, one getting married, chronic illness… it’s all quite expensive for only one salary.

Today I’m coming out of a 3 day bender migraine… it’s postdrome abyss: bad head pain, photophobia, weakness and lethargy. I showered! Hooray! Got dressed and am puttering… some cleaning, some laundry, some tidying, putting some dinner together. Resting right now. This is disabled.

Allodynia, the funny word

Learning about MIGRAINE!
It’s a funny little word that means a lot to peeps with Chronic Migraine. Most docs don’t mention it. My own allodynia began while I was changing from episodic to chronic. It was not unusual for my scalp to hurt the day after a migraine bender, but soon I noticed I had trouble wearing necklaces or even collars. I felt almost like I was being strangled in a subtle & weird way. Creeeeepy. It made no sense to me. I was a jewelry fashionista who could no longer wear necklaces 🤔 When I started connecting with more Chronic Migraineurs, I started learning more – about crazy things like allodynia. Puzzles explained!
#ChronicMigraine #MAM2019 #MigraineAwarenessMonth djk #MyBeautifulMigraine

9 Things Chronic Migraineurs Want You to Know-

Chronic migraine is exhausting. Imagine a job that you could never leave, not even for a short vacation. A job that is on your mind every moment of every day. A job that wakes you up in the middle of the night demanding attention. A job that causes severe physical and mental anguish, wreaking havoc on your body and your life. Now imagine having to do another job on top of that, like raising children or holding down a paying job. And add another job on top of that, one that requires hours of doctor’s appointments and treatments, pharmacy trips, fighting with health insurance companies, and research each week. The physical symptoms are enough to cause exhaustion, add all the other responsibilities on top of it and we’re pretty well wrecked.

#ChronicMigraine #MigraineAwareness #MAM2019

Diagram of Chronic Migraine

a) medicated with migraine meds
head, ice crown wrap to numb brain
pain, which is a #8

b) phone nearby, a connection to the
world, support groups, & method to
call family for help, if needed

c) TV remote; I am comforted most
by action movies playing at very low
volume, somehow heroes give me
strength & inspiration

d) family member has put a lovie near
me to let me know they are thinking
of me

e) example of migraine symptom
dysautonomia – my inability to
regulate normal body temperature;
my body is cold, my head is encased
in ice, and my feet are burning up

f) night table mini pharmacy – this
mini pharma keeps me out of the
emergency room, also has lip balm,
essential oils, Himalayan salt lamp,
coke (caffeine helps migraine) & water

Me & my Migraine reading Facebook today…It’s a real bender, a #8. It’s Father’s Day and I’m only able to text my dad. Not able to do anything very special for my husband. Thunderstorms came through this evening. It’s been 2 days since I showered and washed my hair. Just gross and so ill. I’ve been sick so long that I wouldn’t recognize wellness if it slapped me in the face. I move around this life as a sick person in pain. And it sure isn’t as fun as it sounds.

The Photophobia

Migraine is not just head pain:
Photophobia or photo sensitivity is a huge battle…it’s not like: “Oh, hey, it’s bright.” it’s like: “Omg, it BURNS like fire; I’m going to die.”
I developed severe photophobia as I was going episodic to chronic…I noticed I’d be standing outside and couldn’t understand how everyone was not needing sunglasses like I was. What’s happening?? No doctor explained it to me…I researched and discovered it myself. I struggle with photophobia with or WITHOUT migraine. It’s ANY light…and severely in the dark with car headlights, etc. I haven’t been able to open my bedroom blinds in 4 years and it breaks my heart. Just one of the things I don’t love admitting.
Photophobia, phonophobia, aphasia, nausea, dysautonomia, clumsiness, allodynia, extreme lethargy/fatigue, vertigo…the sexiness of Chronic Migraine!
#ChronicMigraine #MAM2019 #sowingtheseeds #MigraineAwareness djk #MyBeautifulMigraine

Advice People without Migraines Have Given Me |

💜”I get how powerless my migraines can make a person feel. They make me feel that way, too.”

💜”I understand that the people really want to help, yet when offered these types of simple solutions, the complexity of my neurological condition somehow feels diminished. My heart beats heavier, and I want to cry out how my migraines are far from simple.”

Sowing the seeds

#ChronicMigraine #MigraineAwareness #MAM2019 #sowingtheseeds #facesofchronicmigraine

Sowing the seeds to me means advocating for, connecting with, and supporting other chronic migraineurs. I was so alone before I found others who struggled like me. I hid and felt like a freak. Finding the migraine community has saved my life and helped me find my voice – for myself and others.

Migraine timeline & frayed nervous system

You can see from the timeline chart how much time can be invested in a migraine. Attacks are easily multi day events. So when considering Chronic Migraine is 15 or more attacks a month, you’re easily losing almost every single day. Prodrome and postdrome phases can be unbelievably debilitating. These are not just headaches, migraine is a neurological event. Chronic Migraine positions your neurological system into a continuous “fight or flight;” it becomes hypersensitive.
I remember realizing this was happening to me in ~2010.

While working as a nurse, my coworker would call to me to get my attention. It would often startle me (I felt like a cat jumping, clawing into the ceiling, hair sticking on end. Lol).

It was confusing and baffling. A laid-back chick all my life, I had NEVER been so easy to startle. My nervous system was starting to fray and go into a state of constant overdrive. Too many, many migraines.

#ChronicMigraine #MigraineAwareness #MAM2019 #sowingtheseeds
djk #MyBeautifulMigraine