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 Brittany, 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… ✔
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)
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…
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 and the 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 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.
People think of Migraine as “a bad headache.” It’s hard to explain the entire systemic experience. Probably because once chronic, your body in a constant state of “fight or flight,” or prodrome/postdrome cycles.
*Exhaustion *Lethargy *Generalized body pain *Sweating *Impaired thermoregulation *Nausea *Altered appetite *Depression *Anxiety *Throbbing head pain *mild to moderate heat pain
It’s so dumb and wastes a ridiculous amount of time and energy. The shadow that slips into your life with intent to take over everything.
If #Migraine is something you experience, take it seriously… get proactive! Track it, find your triggers, communicate with your health care provider. It’s not all about pharmacology – there are simple life changes, vitamins, minerals and herbs that can make a serious difference.
However, when Migraine episode strikes, don’t “chase it” or “push through.” SLAM IT with appropriate medication and treatment. Improper and inadequate migraine treatment is the root of Chronic Migraine.
Embracing the boredom that living with chronic fatigue syndrome can bring has brought some unexpected joys into my life. I still get annoyed at times, but I remind myself of the benefits boredom can bring to both my body and mind. It’s time we started talking about boredom in the chronic illness community and seeing it for what it is — frustrating and wonderful.
By now, most people in the migraine community have heard of, if not tried, the CGRPs – a new approach in the prevention and treatment of migraine. After a bit of a drought in the development of effective medications for this prevalent condition, many migraineurs were lined up and chomping at the bit to see what all the hubbub was about. And there was quite a lot of buzz about this new treatment. The positive results from the trials were rumored to be significant and potentially life-changing.
A recurring question about CGRPs
It’s now been two years since the three variations of the CGRPs were introduced (Aimovig, Ajovy, and Emgality) and beyond the troubling stumbling block related to its high expense, one major question seems to keep reemerging: “Why does this treatment work so well for some and not others?”
CGRPs don’t work for everyone
Why not me? With hopes raised high by the success stories of others, many of our community members expressed disappointment after trying one of the CGRPs to no avail. Such a normal response to be let down after hearing about the dramatic improvement of others when you don’t achieve a similar outcome.
If at first you don’t succeed, try, try again. However, we have learned that not all CGRPs operate in the same way. So, if one of the three CGRPs is ineffective, it doesn’t necessarily mean that another will not work.
One size does not fit all with migraine
Of course, there’s also the potential outcome that none of the CGRP treatments will work for you. Or that, rather than stopping your attacks dramatically and entirely, this treatment may improve your condition just slightly. Migraine works so differently in all of us so that what is an effective strategy for one person can be completely ineffective for another.
A multipronged approach to migraine treatment
For most migraineurs, there is no such thing as a simple cure or easy fix. Rather, the most effective strategy is a multipronged one, involving multiple approaches which include various medications and countless life alterations (diet, sleep, and exercise) that, coupled together with time, effort, energy, and lots of patience, will result in a gradual improvement in this complex neurological condition that is migraine.
I wish the CGRPs had been the magic cure for me – I trialed Aimovig and Emgality before my insurance made me choose between CGRP or Botox. The CGRP migraine abortive Ubrevly has been quite helpful during attacks – about as reliable as triptans. But none of the preventative monthly injections worked. 😒
This is the most EXHAUSTING and FRUSTRATING part of Chronic Life. It started for me in 2010, I’d get to work and would be sleepwalking from 8 am until at least 12 noon. It was like the flu without fever and respiratory problems – just incredible achiness and complete exhaustion. Baffling, I researched and grilled my medical team. No answers. I’m almost 100% sure it’s related to Rheumatoid Arthritis and post/prodrome.
The most upsetting part is when I finally have a break from migraine, I want to do do do! But my body is made of concrete and I’m trying to move through quicksand.