This made me sad to read. Half alive. I cannot post something so depressing on my wall. Not today.
So I want to publish a funny too… Which is a better representation of the me.☺️
Today…my head hurts. And my sacroiliac is ridiculous. Shocker. I’m battling hypoglycemia as well. And I don’t know why. Preparing for my wee trip. Rest is a huge part of my prep. One more doc appt tomorrow before I go. I’ve had to postpone some appts because of the timing. This causes great stress for a Chronic Half-Life.
I can do this. It isn’t all about me.
One thing is a given: I will NOT go to the emergency room for a migraine. Never. I will die at home or someone will have to physically drag me in. I won’t go.
Migraineurs are treated like crap in ER’s. Drug seekers, complainers, etc.
One time in 2008 after a 6 day migraine, I went in. This was months after I’d been kicked out of a neurologist’s care with her dismissive: “There’s nothing more I can do for you.” Thanks Jeanette Wendt.
My primary was doing her best to handle my chronic migraines.
I just could not get the sucker to break. I was vomiting (I never vomit) and did not know what else to do. Friends of ours watched all FOUR of our kids for almost SIX hours while Marc took me in. Our kids were 5, 6, 8, 10 years old. That alone was unacceptable to me. How could I leave my friends with ALL those young children for so long?? There are just some things that are out of bounds. And leaving my young children for someone else to take care of was one of those things. I did not ask my in-laws and I would not have asked my parents.
My parents watched my kids for 5 days in 2009 while my husband and I went to Cabo for our 15th wedding anniversary. The first thing my mother said when we returned was: “Never again.” Awesome grandparents.
Anyway, the ER did not make me wait. They took me right back after a quick triage. They got me a bag of fluid, some reglan IV and some Dilaudid IV. I was chatting to the nurse in the dark room when she was administering meds. Marc was by my side, holding my hand.
When she began pushing the Dilaudid, I stopped talking immediately and tears ran down my face, I chocked a cry.
The nurse freaked: “Are you ok???”
I said, “There’s been so much pain. For so long. And the Dilaudid – it’s taking it away.” And I cried and cried.
“Oh, thank God,” she said, “I thought maybe you were having some kind of reaction.”
Which I was: Relief, finally.
It was an excellent ER visit. I left with my pain at a 3. The physician suggested it was time to find another neuro. And I agreed. I went home, Marc picked up the kids, I took an imitrex and slept til the next day. I was better.
I learned 2 things: ERs are NOT the place for migraines and I was exceptionally lucky to receive such quick, non judgmental, and excellent care.
My new neuro asks that I call the office on day 3 of a difficult migraine. She will administer medications IM. Or, she will write orders for infusions of mag, Depacote, torodol at an infusion center.
But what I really know is this: every migraine eventually goes away. It’s just a matter of time. So why not wait it out at home…in my bed. I don’t want to go anywhere. Least of all an ER.
So when I was struggling yesterday…and there’s this thought that goes through my head: Maybe I should go to the ER? You know my migraine has taken me to a dark place. A fear-filled, dark and scary place of desperation.
But I didn’t go. Of course. There’s this medication called phenergen that is one of my rescues. Not only is it an antiemetic with pain relieving properties, it puts me out. Almost always. I can count on Phenergen for the Mini Coma that can take me to the next day. The Next Day…where hopefully, the pain is less intense.
I’m at the Next Day. Caught in the bathroom. Day after migraine from hell. I’ll just stay here all day. My husband is being not nice (probably cuz I asked him to get up @10:15 AND change the dog’s water bowl!) and I have my phone. So I’ll just have a little toilet command center day.
In-laws are in town with cousins – staying at a big lake house 20 min away. And I’m missing it all.👍
Onyourmark, getset, go…
Renovations from catastrophic leak in April completed yesterday at noon. Family house guests last night, arrival 18:30. Migraine all day. Fake it, fake it. Smile, dammit. Laugh. Be charming and engaged. Push the pain out. Ignore it.
This morning. Migraine. Sacroilliac. Cefaly x2 but I need to shower…I need to move.
In-laws and cousins coming to stay on the lake near our house. Family, family❤️ And the outdoors. Fake it, fake it. Smile, dammit. Laugh. Be charming and engaged. Ignore the pain, push it out. Sunglasses are great.
They’ll be here til Tuesday. I’ll have to go back and forth to visit, go to docs, etc. Wednesday, friends come to town to stay overnight. Have not seen them for 4 years? I want to see them. I want to see and visit with everyone. They’ll stay overnight and leave the next AM. I’ll just fake it. Fake it. Smile, dammit. Laugh. Be charming and engaged. There isn’t anything I can not do.
Friday I leave for Colorado for a mini family reunion. Just me, my parents, 2 of my brothers. Traveling is hard. Just fake it. Ignore the pain.
“What do we say to Death?”
Later: head getting worse FAST. Rain storm moved thru. Time to get serious …
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…”
#ENDStigma for Chronic Migraine & Chronic Illness
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. 💜❤️💜
#ENDstigma of Chronic Migraine & Chronic Illness
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
#ENDstigma of Chronic Migraine & Chronic Illness