Chronic illness and pain is stupid horrible. I don’t know why my RA is flaring… is it the change of weather? The tiny joints all through my hands and feet are screaming. My head has a frightful constant ache.
Today is a day to rip off the calendar, crumbled up and throw away. Ice on my head and heat on the back. I don’t have enough pain medications. Maybe I could take an epsom bath and just go to sleep…
This is what I normally look like…
I don’t want to do anything exciting like walk, shop or take a trip. With chronic illness, I just want to be able to clean my house, make a meal, feed my dogs and make my bed.
But I can’t get out of bed to make it. Bonnie licks the salty tears off my face.
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.
Addiction is real. A real mental disorder that deserves care and understanding and action. But thus present US govt stance on Opiates (and growing number of other drug classss), there is a terrible disservice done to Addiction, Tools of dealing with Pain, Chronic Pain – EVERYONE.
Opiates and other medications are simply tools. They are not killers, they are not evil, and everyone reacts very differently to medications. Allowing our US legislators free reign to make laws regarding these tools, we invite individuals who know NOTHING about Healthcare our OUR individual health care into our chart, our PRIVATE lives. No no no no no!
I am not unsympathetic to human beings who have lost their lives to opiates – in whatever their capacity – illegal fentanyl, overdosing on prescriptions, etc. Every loss of life is tragic. There is a process where our country could be more careful with opiates. But it’s a no-go inserting government into a patient-doctor relationship. My doctor and I know the tools to care for my health. The US legislator does NOT.
To me, there is only a Libertarian POV for medical care. Not everyone is an Addict. The population should not be scared to death about treating temporary or chronic pain. Doctors’ licensing shouldn’t be threatened for good and appropriate healthcare. The government does not belong in between me and my physician.
I cannot wait for the pendulum to sway back to Sanity. Get the government OUT of my healthcare!
Addiction is real. It is NOT the same thing as Dependence. Not everyone is even on the spectrum of Addiction potential! Treating a medication as an evil thing is just dumb; medication is a tool. And mistreating temporary and chronic pain inadequately because of a creation of an Opiate War is criminal. Advocate for genuine, positive, individual, wellness-oriented, collaborative patient healthcare.
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
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.
I never realized my hands could hurt this much. This is Rheumatoid Arthritis. My hands don’t look that strange – they look kinda normal.
But every bit of them is Pain. Even when they aren’t moving… or doing anything. There is Pain in each little joint. Pain in every small muscle. They feel bloated and large and foreign. How can every bit hurt? How is it possible?
Rheumatoid Arthritis creeped into my life. Slowly. Stealthily. It didn’t arrive with an announcement. It was like a sinister villain who started tiny and grew.
Why had I stopped using my favorite knives to chop and cook? I couldn’t remember. Why was I no longer attending my roses? I couldn’t remember. Why did I no longer use a keyboard to write? I couldn’t remember. Why did my hands and feet swell and hurt so frequently? I would have to sleuth out the reason.
I was diagnosed with RA in the summer of 2013. But as I look back, it had been showing its face and creeping into my body and life at least in 2010.
My rheumatologist would later praise: we caught this early. That’s really good.
But it doesn’t mean RA goes away. She’s here to stay. She is a permanent resident. She can go into remission. She can flare. She can be tucked into a corner or scream and tantrum for attention. She’s part of me and we learn to live together.