Today I cried…

… because of pain.

My little Bonnie let’s me hold her ❤

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.

Chronic Illness is everything

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.

#ChronicMigraine #ChronicIllness #InvisibleIllness #CMAware #ChronicMigraineAwareness #RA #ChronicPain

Happy Birthday!

Most birthdays just melt right into the next… but I was hoping 50 would stand out. Lol. That’s for sure! Here’s the story:

We’ve been a little sick for a week: runny nose, cough, scratchy throat. Covid home test neg! Fever started yesterday. I thought Marc was silly for testing AGAIN this evening.

So THIS was a SURPRIS-O for sure!

So we decided to head to the ER for some treatment… both of us in our 50’s and me with my chronic conditions and compromised immunity…

Off to the ER for COVID19 treatment! In my silky PJs and felt clogs…

No wait at the ER and nice staff. They swabbed us again, took brief histories and agreed to prescribe Tessalon Perles and Paxlovid! Hooray! Now to find a 24 hour pharma WITH some Paxlovid stock! (Joe only purchased 20 million doses for the country!)

The ER staff informed us that the Walgreens at William Cannon had stock yesterday… so we called to check while driving there and – YES! They had stock!

Strange things afoot the Walgreens at William Cannon Saturday at midnight

Script filled in 30 min and we were on our way home to start our antiviral!

The couple that COVIDs together…❤

Our symptoms are pretty mild, compared to some influenzas I’ve had in the past. Sense of smell and taste intact. Guess it was only a matter of time before we got the Rona. Maybe our vaccines and booster is helping but I can’t WAIT for the next Gen of vaccines, personally. Although we’ll have Natch Immunities now which will be awesome! We’re taking zinc, vit D and baby Aspirin, besides Loratidine, NSAIDS, and nose sprays.

Most birthdays just melt into the next! This one will be memorable!

Marc had our yard carded for me! These were taken before we were covid pos!🤣

#thebig50, #birthdaycovid, #happybirthdaytome, #covidpositive, #paxlovid, #Chronicillness, #immunocompromised, #ChronicMigraine, #RA

Sound of Silence

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… ✔

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 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.

#ChronicMigraine #InvisibleIllness #Chronicillness #Depression #QueenofPain

Botox Day is HERE!

Botox Day is HERE! 🎄🎁💉
It’s here! It’s here! One of the 4 most happiest days of the year! Migraines have been an incredible battle the past several weeks R/T weather patterns. And we are supposed to get a nasty storm today… Next #BotoxforChronicMigraine
is June!💉
The day of Botox is a sacred day. It isn’t particularly “painful,” but my body and soul feel “violated” by the 40+ tiny subcutaneous injections. So there is an exhaustion accompanied with the procedure… as well as a migraine triggered.
When I first started botox over a decade ago, I had no problem going to work right after, or grocery shopping, or whatever. As I get further into my #ChronicMigraine and #ChronicIllness adventure, I seem to need the remainder of botox day for rest, recovery & low activity. It’s important to keep your head elevated and not to rub injection sites for several hours post procedure.👍🏼 The medication starts to work appropriately 5-10 days post injections.💉
My neuro and I plan to add oral Nurtec as a migraine prevention as soon as my insurance submits… this will be a long process of prior authorizations and one-on-one’s between my provider and insurance. Huzzah! Thankfully my neuro is dedicated. 💜❤💜
And I have duck boots now. My mom never got them for me when they were popular when I was a teen. So I’m hitting them up this time in the wonderful cyclical fashion wheel👢 #WaitingRoomShoePic

Not just head 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

Every day. Every. Day. It’s so boring.

#ChronicMigraine #MigraineAwareness #Migraine #CMA #ChronicMigraineAwareness

Don’t get Chronic Migraine

Oh myyyyyy

Don’t get #ChronicMigraine.

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.

#MigraineAwareness djk #MyBeautifulMigraine #SpeakYourMigraine #PatientsNotAddicts #InvisibleIllness #Chronicillness

The Side Effect of Chronic Illness We Don’t Talk About Enough

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.

The Side Effect of Chronic Illness We Don’t Talk About Enough

Visiting my FOLKS and the adventures

My parents went to bed at 9 tonight while I finished some graphic work (for my cosmetic biz). I’ve been sorting and managing their healthcare since I’ve been here: Mom GI for Microscopic Colitis, Retina Specialist for blindness and misdiagnosis, Nuero for possible Parkinsons, orthopedic for back pain. Dad for derm. Both of them need a dentist and new GP Internist. And many more!

I’ve been begging decades to do this; to salvage her eyesight before it was lost (it is), to help get them services they need and that are available to them. But she refused and thus, he refused. “Kaiser Permanente is just so amazing!” She would declare 1996-2019. Even though they’ve misdiagnosed her. Left my dad in need with bizarre pain. Let her go blind.


Yes, fucking BLIND.

Ah, ya love to see it. These scans deteriorated and no one did shit. She has between 11-16% vision in each eye. Well done, Kaiser! Oh so well done!

Finally was able to crack my dad’s concern about this odd but upsetting LLQ pain … trying to get concise history and symptom story from him is beyond challenging, Mr tangent stream of conscience. Anyway, 4 years later and I finally HEAR him express a specific concern: “my mother had ovarian cancer and I wanted to make sure there wasn’t a mass in my colon.”

Wait! What??? Do you mean to tell me you’ve been worried about colon cancer the last 5 years… despite every test known to man being fine!? Why! Why didn’t you just tell me that!? The idea he has been stressing over something so easily ruled out troubles me. I’m sad that he’s been afraid and stressed for no reason. All of his tests have been fine. I explain cancer to him and roll play how he can communicate better with me and healthcare proffs.

As I’m talking to him about having to accept he may need to “listen to his body” and he can’t just jump up and do everything that he did in his 30s, Gail comes wandering in the kitchen. She announced 6 min ago she was going down for a nap.

She can’t find her phone. It’s next to her bed. But then… Dad has to come make her headphones work, she’s yelling from the other room. He comes back out and I can keep talking to him. She’s up and wandering again in 4 minutes. It’s something else. Glasses? Her audio book has stopped?

Then I teach my dad the meaning of FOMO.

So because they wouldn’t let me do this for them in 2007/8 when I worked as an RN in Tucson and they were BOTH thirteen years spryer, less frail, with fewer health issues, I’m wading through absolute shit now. I’ve been away from Tucson healthcare for 9 years. Humana customer service is actually staffed by simpletons (they actually gave me the name of an acupuncturist for a orthopedic.🤦🏻‍♀️ wow, that’s competence.)

Anyway… I’ve been through every file today and created appointments and clear pathways to healthcare success. It’s better when Gail is out of the house so I can speak on the phone without her yelling wrong information at me from the kitchen. Tomorrow I’ll need to fill out new patient paperwork and figure out this neuro for her. It will just take some time. More time.

Later we watch TV together. The couches are a couple months new so we sit outside the living room to snack or have a drink because Gail doesn’t allow anyone to have food while sitting on them. Oh yeah… that’s a THING isn’t it?

I’ve already had a scolding on day one when I sat on the couch with my half cup coffee. I used the coffee table to rest my glass. That wasn’t allowed. I’ve been cuddling laying on my side on the couches every once in awhile too. Wonder if that’s been frowned on? I don’t effing care. It’s a fucking couch. Gail hasn’t said anything… yet.

So there we all are in other rooms watching the TV in the living room – which is about 20 feet away. We look like a bunch of assholes. Later Gail frets what they’ll do if they have a party; people will expect to drink and sit on the couch. Maybe she’ll need a sign or plastic on the couch?

When my nephew was very small, he once said to Gail: “Nanie, it’s almost like you love your THINGS more than you love us.”

She tells that story all the time. About how furious it made her. “How could he say that? I wanted to bop him!”

Well no shit, Sherlock. That little boy was 100% legit on the money. Nanie, you love your THINGS more than you love us. And you keep telling that story about your grandson… make sure everyone hears it. Their response will be perfect. She doesn’t even see it; AH-MAZ-INGGGG.

“Squidward has always been there for us… WHEN IT’S CONVENIENT
FOR HIM” Oh the 49 years of stories I have re my mother.

Then she announces at 8pm it’s bedtime. I’m going to stay up and watch a show with my dad while he does sudoku. He loves loves it. We are laughing at the TV together.

Gail putters out. Does she need something? Her phone. “It’s right by your hand. No, where your hand was. Just there. Reach and touch it.” She retrieves it and pouts because dad and I are doing something simple without her. Less than 5 minutes pass and she wanders out again: “Don I can’t find my night cream. Can you PLEASE find it for me under my sink!?”

I am well aware all this behavior is not due to blindness. There is something much deeper happening. Blind people don’t lose track of their phones. They can find night creams. They don’t bump into things in their house everyday. They don’t shuffle. They aren’t needy for Every. Fucking. Thing. They don’t demand you STOP everything you’re doing to assist them with something trivial. None of this is blindness. This is something else completely. Something that was born in her youth from terrible trauma of an abusive mother and a negligent father. It’s retarded her emotional age to that of a kindergartener. And there it remains… forever and always. The gift that keeps giving to all. Everyone around her needs therapy because the abuse is so saturated with toxicity, there isn’t any oxygen at all.

But I’ve got decades of therapy on my side. A recent mantra of: it is my choice to ENGAGE or NOT. I do not have to engage. She may have programmed the very buttons she knows how to PUSH in me, but I am sentient and not without my own WILL. And that will keep til I yeet outta here at 04:00 Sat AM.

After she’s completely ruined any time for my dad and me… instead of bed, she’s also come out to read an email to us and demanded we look at it with her. She’s fluffed the pillows on the stupid fucking couch even though I said I would do them. And what else? Idk but it was rude and unbelievable.

So then … my adventure: My parents went to bed at 9 while I finished some graphic work (for my cosmetic biz). I’m texting my brother, making graphics, winding down. Gail pops in the guest room door AGAIN. She wants to say goodnight.

Awww! Out of kindness? Um, N O P E.

It is my choice to ENGAGE or NOT. I do not have to engage. I am sentient and not without my own WILL. Donna dear, BITE DOWN the snark and “here’s what I really think of your absurd and childish behavior.” Swallow it down… like a jagged little pill. It feels so good… swimming in your stomach.

“Goodnight, Mom! Sleep very well! I think I’ll take a quick shower in a bit.”

She leaves. But I can hear her yelling at my dad to “come to bed now,” “take the dog out,” “bring that to me,” “hurry up, Don.”

And I want someone to shoot me if I ever become this. This. Is intolerable and Exhausting. Their day is as follows: 06:00 Up with dog, breakfast.  08:00 dad walks dog. Home. Dad walks mom. Home. Dad walks neighbor. Home. 09:30-10:30 Coffee and cookies (or trail mix – which Gail refuses to call trail mix… it is “GORP” – the term she learned in the ’80’s. Maybe the GORP goes in her POCKETBOOK? Ai yi yi) 10:30-12 Don may putter fixing the house and enjoying his gardens or working on projects for Gail while she sits at the computer and yells at it because it won’t do anything right. Less than a decade ago, she would use a computer successfully everyday as my dad’s office manager. Thanks, Kaiser. Main Meal prep can start anytime after 11:00 with Gail barking orders, demanding help… all while Don sets about readying the Supper. They bicker and get on each others nerves.. I somehow doubt this performance is just for me.. It’s about noon when we have to sit at the kitchen table for Main Meal (and don’t question this routine or practice because deviance is not tolerated. Explanations are not ever required. This is The Way. So just shut it.) Main Meal and the infantile schedule trumps all. As the guest, I have to sit in the middle so I can have the view (the view of the fucking street. With sun.) Yay, we know how sun helps my migraine brain. After Main Meal, Don needs to sit and digest with soduko. He has GERD and bending to load a dishwasher is very stupid. Gail won’t let him just SIT so she loads the dishwasher carrying on and martying herself. Because the dishes MUST get done, although she is making a mess. 13:00-16:00 is rest time and free time. Maybe errands or more screaming at the computer. 14:00-15:30 is pool time for Gail since she discovered a couple weeks ago that she has lost the ability to swim at all. Don admits to me that he hates pool time but he does it for his happy wife. He has to stand with her at the pool so she doesn’t go under. She is convinced this is the way to regain strength. The Way. 16:00-20:00 is Supper Time… a small meal, wine and TV time – Gail gets to pick the TV, Don would rather watch news. Gail doesn’t want to watch news. So they don’t watch the news. 20:00 is bedtime.

When my babies were very young… I put them on a schedule. It included meals and snacks, naps, toddler time. Exercise for me. Dinner, bath time… it was a thing. And the babies thrived because babies do well with a schedule. You know who also uses a daily schedule? Fucking nursing homes, that’s who.

Breathe, Donna. You can do this chica. This isn’t your life.

So I’m doing my case management thing: calls, searches, web searches, writing up questions, making appointments, collecting previous pertinent doc notes and tests. I’ve been planning this trip since the summer. My babes would be at school and I could drive here and work a week on this mess. Get it in SOME order… feel like I helped out a little… even though I’m still bummed this would have been easier a decade ago, darn-it-all. My parents are super impressed by my charts and flow sheets. By all my calls. My brothers comment that they are grateful I’m doing all this. All the time I’m drinking my coffee, avoiding the NEW COUCHES, missing my empty nester hubbie boo boo (who Gail laments could have spent time with Don!!! – probably because I am not allowed to spend time with him. Duh.) My kids are texting me from school and vacation… and I’m adoring that they haven’t abandoned me here. My babies. Love them tight. Also my brother texts and calls me. Their texts buck THE SCHEDULE and keeps me sane. Life finds a Way.

It’s nice for everyone to be impressed with the medical case management but this is what I do and what I was born to do. I’ve done it for myself, my husband, my children, my friends, others in need. Gail thinks I should do this for a job. I tell her that’s nice of her to say, but no one would pay for it. And besides, I can’t even get my family to purchase my best cosmetics and skin care and support my legit biz. *cough cough* Gail… ” who would pay me?”

My friend Aimee has also mentioned this to me. As if there’s this job out there that I could create, save people, explain their healthcare and help them navigate while advocating for them. I miss being a real nurse. 👩🏻‍⚕️🩺💉🏥

So I finish up my work. Head for the guest bath and a quick shower. It’s now 22:00.

Well… the toilet exploded. That’s an exaggeration… it overflowed when I flushed a tissue. Seriously… nothing but a fucking tissue…

Are you fucking kidding!?
I’m naked about to step in shower. No clothes. No phone. No robe.
I throw all the towels (except my shower one! Huzzah) at the floor to absorb seeping water. Holding inside toilet gadget up to stop water flow.
I’m utterly and completely stuck.

Powerless. Alone. Did I mention naked?
Swear quietly. (Don’t want to wake my folks – how could they help… I’m naked.)

Swear more.

My back is out. And I’m contorted in the bathroom naked.

Able to peak in the cabinet. No plunger. Swear creatively.

Wait. Swear. Repeat. Until…

Finally!!! The water in the toilet does that blurp and goes down the drain pipe like it should.
I’m cleaning up all the water with every towel and throwing them in the sink.
I’m going to take my shower.
I’m crying in the shower from my back. It hurts so much. And it had been pretty good today. 😢

The pain intensifies, shoots, burns, cripples. And my tears are mixing with the shower. It’s like I’m upset about more than just my naked gymnastics during a toilet flooding for no goddamed reaaon.

Finish my quick shower.

More mopping with towels… it went further than I thought.

My sacroiliac and back feel as though they are snapping and shredding in 2. The crippling pain takes my fucking breath away and I know it’s here to stay.

Get dressed. My travel deodorant has run out and I have to try and find some in my parents’ medicine cabinet (it may be from 1986 and last used by my exSIL). Discovered – men’s deodorant. I use it; it’s actually very nice. Huh. 😌
My feet feel scuzzy. Trying not to get them full of scuzz potty water. Creative swearing.

Carry all the towels and bathmat (about 25 lbs) to clothes washer. Ai chi chi, my fucking hip and fucking back! Swear while loading the washer. Start the washer. Swear.
Find swiffer and bring with 2 cloths to the bathroom.
Clean floor. Clean sink with lysol cleaner. The bathroom is sparkling. Swear my ass off. Everything is drying.
Put swiffer back. Machine is washing towels. Close laundry door.
Fall into bed feeling awful. Hurting. Grossed out. Tired. Aching.

I have my ice. My head hurts.
Settle in to text my Marc❤ for love and support and to talk about his bday tomorrow.
Quiet. Breathe. Mindfully remove the insane pain.

Trying to find SERENITY, NOW. What the actual?? It’s now past midnight.

Breathing into CÁLMETE. I can survive this stupid fucking stupid… thing?

I start to text my Lover, my fellow in crime, my partner of the Empty Nest.

But… Lo!

There’s a sound: the fucking high pitched bizzzzzing of a fucking mosquito in this fucking house in the fucking desert… in my fucking ear.

#Chronicillness #AgingParents #ChronicMigraine #Narcissist #StupidAdventures #Adulting