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?
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.
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!?”
Let’s talk about NON MEDICATION migraine prevention and treatment. This list can be incredibly helpful. I’ve always believed in a multi approach at treatment – migraine treatment doesn’t always have to be drugs.
You are not alone. You are not a freak. You didn’t cause this. You are not attention-seeking or meds-seeking; you are just trying to survive, be present, and LIVE. Every day, you work to try to get better. I see you and hold you up. Together, we will make a difference 💜❤️💜🌏
May your ice packs stay cold and your abortives anf treatments pack a punch in migraine’s face!👊🏼
Please: make sure to download a migraine tracking app to your phone & use it! This will be essential information to bring to your doc. It helps creates the data that could identify your triggers & identifying migraine TRIGGERS is your most powerful step in migraine treatment.
Migraine is the third most common disorder worldwide, affecting 1 in 7 people. Chronic migraines affect about 1 in 50 people worldwide. Women tend to be affected by migraines more frequently than men.
Now… I’m realizing – for quite a while – I dread it; it makes me anxious. Because I’m so terrified of waking up feeling like crap the next day. It just hurts my soul and destroys my joy.
I look back on my day in which I’ve accomplished nothing – often not even getting out of PJs.
To manage sleep, I must always address the pain I’m in at present: heating pad in the right spot, pillows propping the best ways, and ice in place on my head.
I dread the pain and exhaustion I will wake up with. The uncertainty – will tomorrow be like today – pain, disappointment, dragging my butt around trying to get SOMETHING done – maybe put away some clothes or straightening a room, run an errand to UPS, work my biz … in between flopping around like a dead fish in my bed for essential rest and recovery.
My RA has been flaring – a couple of days ago, I tried to pick up my mug of coffee, and my hand failed… coffee flooded everywhere. And it made me so sad. This was a new and awful experience for me. And I was mentally broken cleaning up the disaster of a “hand fail.” And, of course, since my new Neuro switch, I’m 2 weeks late on my #BotoxforChronicMigraine so – yeah, my migraine has been a bastard.
I work hard on granting myself and my body GRACE as I lie here, trying to fall asleep: my hands and feet ache, my head hurts, and my lower back pain and sciatica are screaming. Every muscle and joint is impaired.
I know oblivion will eventually come. And I’ll sleep. And I’ll dream. But then I’ll open my eyes up in the late morning to another day of chronic illness and pain. And I’m anxious about how hard it will be.
Another joy chronic illness has poisoned. A small prayer: may we all have a good day tomorrow. 🙏🏼
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!?”
Piercings with my girls today! I love a piercing to represent each year I have been chronic… my little way of making an Invisible Illness, visible.
Haven’t really blogged in awhile. I have so many ideas for pointless storeytelling posts. And maybe someday I’ll get them to print. Once… not too long ago, I fancied myself an #AuthortAt49. As my present age of forty-nine is nearly sunsetted, it’s a fact that I’ve done the leanest writing in my life.
The amount of #sucking I exude… emanate… radiate… is dangerously toxic. Run away. RUN. AWAY. Far away. Run fast. If you come into contact with me for more than 15 min, take a hot shower and scrub with lye.
There’s a song for that:
With a taste of your lips, I’m on a ride
You’re toxic, I’m slippin’ under
With a taste of a poison paradise
I’m addicted to you
Don’t you know that you’re toxic?
And I love what you do
Don’t you know that you’re toxic?
It’s Britney, britch..
So why the Diva Donna Sound of Silence? Too much to write about… ✔ plenty of time to write….✔complete lack of motivation… ✔ unsual, nonstop, under-controlled PAIN and symptoms… ✔
10 min mailpod trip today = 25 spoons, capital I do not have
I spend normal waking hours professional TV watching. And literally writhing in pain in bed, doing the RA Weird Bed Stretch, sleeping ungodly amounts of time. Tears… and more tears. Drip💧 drip💧 drip💧
I’m just BARELY existing. Have been coughing from allergies since November (inhaler, nose sprays for treatment). Bizarre sky high BP for a couple months (~150/95)
My doc and I have decided on some changes- including switching from Loratidine D to just Loratidine.
It’s pretty obvious I will have to go on a cardiac BP migraine prevention med again – I was on Nadolol for years for migraine prevention. It never did shit for migraine but I wasn’t hypertensive then. And now my migraine clusters feel very related to my high BP. And I cough with allergies… and crap, my head explodes with pain with each cough💥 cough💥 cough💥
Please no more. The tears start and they don’t stop. I’m crying and crying.
Marc and I quibble and argue about stupid stuff. It’s the same circular train. 1) “Money is tight,” states Marc. Translation: Donna, you literally contribute NOTHING to the marriage & our children’s lives. You’re worth more dead than alive. Strangely and for no reason that I can connect, this conversation and translation leads me to become silent and distant. Kind of like I want to walk off the nearest 55 foot cliff to my death. The next part of the part of Marc’s conversation is, 2) “Can we never TALK about this without you getting upset?” Marc bewildering asks. Not a prob; let’s just get passed the next sentences of me being a big fat burden so we can talk more about not spending money. Which I think we already discussed? Because this is a conversation we’ve had for the last 22 years. And, frankly, it’s BORING. It’s tiresome. And the same exact conversation. And round and round the train goes…
Blah blah blah blabla blah blah
Don’t mind me… I’m just existing in bed 23 hours a day. Vegetation grows inside me, replacing my vital organs… vegetation alongside me, roots form and burrow underneath me, replacing my veins and growing into the mattress, my wings are broken, they are ripped out of their sockets and hacked to bloody stumps. I am a plant stuck. Joy is waning, Joy is untouchable.
As I’m existing here… I lay on my right side… head propped on soft pillows, slice of pain starts at the top of my right head and travels down to my ear. There is a flowering of some beautiful pain in my right temple. My hands hurt… it’s like on a cellular level… the cells of my hands and fingers hurt. How dumb is that? The same cellular pain is in my feet… their joints, and muscle tissue. If I keep them still, maybe I’ll notice it less. The pain up my right thigh and lower back is different and more intense. But overall, there is this covering… like a web or large linen cloth – it envelopes my entire non-ethereal person. It is so present… it reminds me I cannot move… I cannot breathe… there is no me, only a linen sack of body. The tears drip out of my non-ethereal eyes. Drip💧 drip💧 drip💧 Flow. They’ll never stop. All Joy is gone. I’m alone in The Dark Hole. People I loved have left me, turned their backs on me. I can scroll my contact list and it is full of strangers and people I only used to know.
At present, Ukraine is being bombed to rubble. One day Ukraine is wining the war, the next day Russia is. My fav journalist Ben Hall has lost limbs but is alive. Biden says you can’t buy a cannon. Kamala is under the spell of the Significance of the Passage of Time. Boris Johnson (PM UK) toured Kiev with Volodymyr Zelenskyy (Pres Ukraine). Optically, it looked majestic. My dearest niece in law (42) just lost her little bean baby… an IVF baby 11 weeks whose heart stopped beating. Her D&E was Sunday. Courtney rolled her ankle and is in a boot for weeks. I don’t know if Corey is ok. I don’t know if Nick is ok. Robyn seems ok. She broke up with her new boyfriend a couple of days ago and is sad. Courtney’s bestie broke with her BF after 7.5 years, and she is hurting. Sue sends Dave letters showing she is still firmly chaining herself to her personal constructed Hell Loop, and I can’t even imagine the PAIN she is creating for herself. She holds the key to her release but won’t release herself. Eric Adams (mayor NYC) has pulled down the mask mandates EXCEPT for children 2-4 years old. Those babies may not even be potty trained (and certainly they are NOT spreading covid), but they must wear a face mask. I can get another covid vax booster, but I don’t WANT the SAME vax – I want one with updated strains, for crissake. In Florida, insane people don’t want a law passed that doesn’t allow sexual/gender discussion in K-3rd grade. Disney is at war with Ron DeSantis. There’s been a terrible shooting in NYC subway – shooter is not caught yet. China is shutting down for a new strain of covid… yet there has been one death. The world is in ruins. Like the rubble and ruins of Ukraine. There is no Joy. There is only great Sadness. I’m losing friends… I have nothing to give…. my circle of Life closes in, and I’m fashioning myself a Recluse. I used to always be sure in the bond with my husband. Just a few days ago, we were holding each other. And now…
There’s a little black spot on the sun today (That’s my soul up there) It’s the same old thing as yesterday … I have stood here before inside the pouring rain, With the world turning circles running ’round my brain, I guess I’m always hoping that you’ll end this reign, But it’s my destiny to be the king of pain.
mybeautifulmigraine 