I Ain't No Julia Roberts

 (Sidethought - I can quote pages of dialog from the movie - why can't I remember her name?)

Random mental meanderings interrupted by my dog

Giddy side effects/wait 5 minutes

Steel magnolias brainstorming

Julia roberts done me wrong about a lot of things (glamorizing prostitution, feeding my Erin Brockovich fantasies, TINKERBELL?) But Steel Magnolias was the worst. She made being diabetic glamorous. Even the freakout scene in Truvy's converted carpark. 

You know the one... Truvy is chatting away, building sentences and curls with equal precision and incredible speed. Then JR starts freaking out (god, there's a black cloud over the name in my memory of the quote from the damned film!) yada yada gets Hollywood disheveled and then comes to, feeling horrified and humiliated by her own body betraying her... and Truvy restores her within 30 seconds. 

Other female diabetics, sing along with me now... Lies, lies, lies, no freaking way, lies. 

 So, anyway... we come to today. I'll flesh this in later maybe insert details like the feel of the wheeler under my butt after 45 minutes, but initial flashes here - I arranged through fb for a woman to come cut my hair (insert beauty college, etc.)

Way Before, Before and after of me.

Feeling a need to get things down urgently before I forget them or the thought is interrupted by dogs like Omar Kyam

Cassandra Rising

 I had an epiphany tonight, watching the news and seeing more and more signs that the death of the UHC CEO wasn't a domestic dispute. I think that shot was similar to Archduke Franz Ferdinand. I believe that was the first shot of the next world war. I'll flesh this out more, but I wanted to write this down tonight. 

Assembly Line

 

Sitting making new hymnals for Mom's branch - I'm making labels, Mom's prepping the folders, Roger's punching holes, Sherri and Don are doing assembly/quality control... I just love the feel of a group project during the assembly stage, where all the decisions have been made and it's just "get behind the car and push" time. Quilting, canning, even just cooking together - it just feels so productive. Happy memories...

 

Coincidentally, Cat was doing Christmas cards over in her corner of the world. It was lovely - texting back and forth, felt like we connected through projects. 

Frustrating phone call

 

TL/DR - frustrations with medical, but hospice is moving forward

One of the most frustrating phone calls of my life. Let me start out a month ago. I had my annual recertification/checkup call w/Dr W.

At that time, I mentioned that my body has been wearing down, and I was thinking of switching to hospice. I believe Ricky (my liver) has started the final countdown, and I honestly think that I would not survive a trip to SLC (where the nearest hepatologist is). A couple of weeks later, after some pretty vile dry-heaving, I decided it was time. I wanted to go ahead and transfer over to hospice care. I called my Drs office to set up an appointment (which was a week and a half out), but I also sent a message saying "If you can send a referral to my HHC/hospice provider just from me letting you know, great, otherwise I'll see you in a week and a half." I believe my home health care nurse also sent a message saying "hey, Deci's wanting to switch".

I believe that my doctor (or possibly just his nurse, T) took that as me trying an end-run on insurance/medicare. There was a bunch of back and forth, ending up with me sitting on this phone call. I also sent him a letter outlining my reasoning, so that I'd be prepared, as I've been having difficulty with getting my words out clearly. I also got H (the nurse over the Hospice program I want to switch over to) to sit with me so that we both heard the same words at the same time and she could help me explain myself.

I think I was right about offending my doctor, because he came in flashing his "hospice director for 8 years before I came out here" credentials, started out telling me that he didn't think I was a candidate for hospice because he doesn't think I'm going to die in 6 months.

We went over my various diagnoses - Hank, Ricky, COPD, Diabetes, hernia, etc... My being unable to walk 3 minutes. We talked about me not being able to leave the house without severe panic attack, and that it took me two days to recover from a trip to Roosevelt - seeing any specialist is out of the question. Yep. He agreed with me. But can I point to where it says less than 6 months? He thought that a hospice level of care was probably exactly what I needed at this point. He just wasn't willing to put his name on it. Because he doesn't think I'm going to die in 6 months.

I asked him what else he would recommend, if not hospice? Well, he offered up going into the senior living/care center attached to the medical complex, because that way they could wheel me over for my appointments. My appointments that accomplish nothing. After 30 minutes of what felt like justifying my pain, he finally came out and admitted that he was not going to send a referral, but that I could call Dr. M, and he could admit me - he even sent a note to Dr M warning him I was coming.

Damn it, we need a middle level between GP and Hospice - maybe call it stability? (Roger has helpfully pointed out that stable and I really don't belong in the same zip code.) But basically... acknowledgement that I am not going to get any healthier. There is no chance that I'm going to suddenly see the light and walk, so there is no reason to keep driving 3 hours each way to the tabernacle.

This isn't me giving up.

Why Hospice?

Dear Dr Wells

 Apparently, when Harley was talking with Tiffany this morning, Tiffany said you didn't remember talking with me about hospice. I've made an appointment with you for week after next, but I'd like to try to get my thoughts out on paper, if that's ok.

I feel like I'm moving a step down in my progression on my diseases (and on my body just being worn out.) At this point, realistically - 

-    My cancer is dormant, mostly. It's not growing... hasn't grown in years, and that's terrific, but it's also affecting me every day.

-     Catheter issues. It would be good, since I'm reliant on the catheter, to have it checked more often than is usually done on home health.

-     Liver issues - I'm having days (three, so far, but it seems to be trending) where I dry heave for six to eight hours straight. Nothing comes up other than very bubbly mucous (lots of it). I've been feeling more and more generalized pain, especially cramps in the abdomen, and bad excess flatulence, all of which I suspect mean I'm going from the compensated stage of cirrhosis to uncompensated. While trying to set up an appointment with a hepetologist in the city, I realized that there was no way I was going to be able to drive over to the city - I'm having serious issues just getting into the car, let alone driving 300 miles just to be told to change my diet. I've changed my diet. I've tried PT. My body is worn out. I'm worn out. I don't have it in me to fight much longer - at this point, I would like to switch over to comfort care, rather than trying to fix me. 

-    I am, at this point, experiencing severe agoraphobia, so leaving the house leads to panic attacks just getting into the van, which I can not do by myself, and which can take 5 minutes or so even with a couple of people trying to get me in there. I don't know how I'm going to get to Dr Potters on Monday - he is requiring an in person visit, and I honestly don't know that I can do it. I am at the point in my life where I don't want to work on my issues, or try to get better. I just want to be able to be comfortable and slip away as safely as possible. While I really enjoy seeing you and talking with you, I think that I need a different approach - I think I need to step up to quantity care, if that makes sense. I don't want to have to wait a week to talk to you about a UTI that I have or that I'm dry-heaving (again). I need help keeping my skin clean and rash free, which for me requires a shower every couple of days, and I'm at the point where I need help with showering. I need help organizing medication. 

Anyway - I just wanted to try to explain myself in an organized clear fashion.

A Stye

I've got a stye in my eye. 

Little red bump that I normally wouldn't even notice, really - 

except it's pressing against my eye, making it impossible to blink without a jolt of pain. 

There's not really anything I can do, other than apply a hot compress and wait.

I have no control here... which is more infuriating than I can possibly express

because this isn't about the stye in my eye. 

It's the stye in my soul.

 

I've loved this man for close to 30 years. 

God willing, I'll love him 30 more.

But there's this stye - this glitch pressing right on my heart, making it impossible to love without a bit of pain.

There's not really  anything I can do, other than find him a shark of a lawyer and wait.

I have no control here...  which is more infuriating than I can possibly express.

Nabokov on Caterpillars as inspiration

 I am in my chrysalis phase. I have spent my life as a caterpillar, but now I must move on, regardless of whether or not my mind is still busy caterpillaring.  I have begun to enfold, crystalize, harden into immobility. Most of me will sluff off into primordial goo, but that instar bit, that flash of inspiration, the spark of wit, my...eclectic fashion sense? I feel those hardening within my shell, persisting, striving, continuing out into the universe!

I will go on! I know that this shell of a body is not my destiny - I will live on in one beautiful form or another. 

Poor Dusty

 It's Friday. Fridays are hard on my little girl - first comes Mama's physical therapy, which she feels *requires* her presence in a supervisory (or possibly a continuation of her secret service) capacity.  Next comes Kim, and (shudder) water torture.  She loves running around in the rain, but god forbid she get a shower... This week, the other two puppies just followed along, but Dusty? She hid until she thought she was safe, and then when discovered, attempted to make an escape. Roger grabbed her up and put her in air jail, but her little legs were still attempted a 100-yard dash while suspended in midair.  My girl - she's determined even if thwarted.                                                                                                                                                                                                                                                                                          

"Last Night, I Had The Strangest Dream"

 

Thanks, Pete Seegar! Writing this up at the request of Mom

Whenever I take the first of a new batch of gummies, there's always a titration issue - is one enough, are three too many... five is right out, incidentally. Anyway, last night's batch was particularly good, and sent me straight to dreamland.

Just as I was slipping, I could feel my soul (for lack of a better word) leave my body. I felt... that old childhood game - Light as a Feather, Stiff as a Board? My essence was just a glowing light rising up - no control, but I didn't want control. Just peace and warmth. As I rose, I noticed a glowing mass in front of me... and I swear I heard a ka-chunk, like the opening of a bus door. But nothing was particularly clear visibly, just a round mass emanating calm, happiness, welcome, joy...  Mostly welcome - a sense that yeah, this was where I was going, and that it was going to be an incredible party on the way to my next destination. 

 I tentatively tried questioning the driver - felt a lot like Mr Rogers, but not in a gendered sense, just in a love everyone and make them feel comfortable sense.  They reassured me that yep, I was on the good list - reminding me that we're always our worst critic in the short term, but that the long view sands down the nicks and scratches, and that the Universe loves me as I am. Considering my situation, this was an incredibly comforting thing to hear, but the more comforting thing was... they asked me if I was ready for the next thing, or did I want a few more turns around the dance floor? (Well, ok. They told me that I'd shouldered burdens they wouldn't have tried, and my survival showed that I had vaginal muscles that wouldn't quit (Betty White said "Why do people say, 'Grow some balls'? Balls are weak and sensitive. If you really wanna get tough, grow a vagina. Those things really take a pounding ... But I get uncomfortable taking credit for my survival... end of parenthetical bowl stacking)).

Anyway, after congratulating me on my fortitude, they mentioned that it was a choice. I could go on to the next thing, and it would be a party like no other... or I could stay a while longer. It would involve some pain and suffering (I may have snorted at Bus Driver Rogers... I apologized!), but I get more time in this particular skin. This skin that I'm still uncomfortable in after 59 years, but that I'm starting to forgive. So, I waved him off, politely, and I felt this pulse of warm love and starting sinking back into my shell, feeling the aches and pain returning, but also the connections to this life that make it worth continuing - the rings of love around me. Family, friends, the rest... the going up is worth the coming down. Just not yet. As they left, the driver said "See you when I come back around in a few..." ka-chunk.  I didn't hear the last word. I'm sure it wasn't hours, but I doubt it was decades...  I'll take a couple of years.

Birdbraining

There's a photograph/meme going around that got me thinking. It talks about a hen who sat several duck eggs. When the eggs hatched, because baby ducks are very similar to baby chicks, she just treated them like you would any other baby...  essentially, they were assigned chicken at birth. But... and it's a big but. You put a baby duck in the water, it's happy as a lark.  You put a baby chick in water, it drowns. You can imagine the first trip to the farm pond, poor chicken was running in circles, clucking her head off, "oh, god, my babies are gonna die..." But apparently, by the third trip, she accepted that her children identified (correctly) as ducks, she accepted them... and now, if the farm has any duck eggs to hatch, they give them to her. 

Things You Don't Expect

 Roger and I were going through the evening "time to go to bed" routine... when you're married 24 years, you definitely have a routine. But anyway... life changes happen, yada yada, a catheter appears.

I am incredibly grateful for the catheter, but it can make for some odd moments. Like tonight, for instance. Roger had just emptied my (excuse me, any gentlefolk) urine out of the... well, pissbag.  (His phrase - can you tell he's a vet?)  

Anyway, suddenly change the commercial right in the middle of an ad... just in time to hear them say "Do you need help with vaginal moisture?" Nope, nope...  doing just fine.

Box of Pricks

 I did not have a good relationship with my father for a lot of reasons, but a big one was his last wife. I had to live with them for a year when I was 15, and the neurosis that year inspired... Anyway - Dad died of Covid a couple of years ago. I probably would not have gone anyway (middle of a pandemic, plus... just didn't like him) but I felt the need to do something. 

So, I called a local flower shop and ordered a succulent garden. Well, that's what they called it - I referred to it mentally as a box of pricks. It did my heart some good to find a way to both express my condolences and be a sneaky snark. 

A couple of weeks later, Brandon (my half brother), calls and tells me that my stepmom loved the cactus because it was something she could keep in Dad's memory, where the flowers died and fell away,. but for some reason the cactus had all just died. You could call it Karma. I just called the florist and arranged for a replacement. 

 

 

Touchstone

 Pain.

Lots of pain.

Constant pain... 

anger. No. Rage. Rage glittering down my arms, running through my hair,

my skin contracting, expanding, not fitting... 

I don't fit. I can't contain the ME in this feeble skin manikin.

My pain is a live wire just waiting for an opportunity to 

Jump to its next victim.

Please don't let me connect to you right now.

You're the reset I need 

The vision of who I can be at my best.

Don't let me blast away my touchstone.

(image is Wild Woman Riding a Unicorn', by Master from the Amsterdam Cabinet, 1475)

Does It Spark Joy?

 I was getting dressed this morning, looking at a pair of underwear that I bought - $50 for a set of undies. Now, they're supposedly "period proof" underwear - get real. I doubt that anyone is buying them for periods. We're buying them because our bladders have failed us - they're incompetent little bitches who can't hold their water - but that's a discussion for another day. Today, I want to talk about how I'm being charged $50, and these guys can't even be bothered to do a French hem. There are raw edges, unclipped threads... which led me to thinking about Grandma Lova. 

My grandmother was a professional seamstress. She sewed at the factory for 20 years - enough that her fingerprints had been worn away through erosion, rubbed out by constant contact with the rough fabric. Don't worry - I'm not going all Dolly Parton on you. For one thing, Grandma would be horrified - she was always much more practical than whimsical, and if a coat she made had many colors, she'd think it a failure of planning. For another, it's hard to get all misty-eyed about a pumpkin-orange leisure suit, which was the most memorable outfit she ever made me. But you can damn sure bet that pumpkin-orange leisure suit did not have any raw hems. 

But then there is the dress I'm wearing. This is probably the most significant piece of clothing I've ever had. Let me start at the beginning...  For my birthday, Mom got me a t-shirt - just a simple black t-shirt with white lettering, but it said "Vote Like Ruth Sent You" with a picture of her dissent collar. Now, if you know me, you know that I treasured Ruth Bader Ginsburg, so I loved the shirt... but I couldn't wear it much because my body is not built for t-shirts. It's the childbearing hips - ok, no, it's the continental shelf I've got hanging out the back, but anyway - t-shirts roll up and refuse to even try to cover it. 

But I was scrolling through Facebook and saw video of how a woman had repurposed her t-shirts into maxi-dresses and thought "Yeah! I could wear the heck out of that." and mentioned it to my Aunt Sherri. Aunt Sherri is the recipient of Grandma's sewing genes - she took the t-shirt and found 2 yards of fabric at Jo-anns and made me a dress (and several purpose filled scrunchies). Guys... it's how my family loves me, in a maxi. I'm in tears because of the love in this dress. 

He

 He's the vast unknown I'll spend my life exploring

He's a strong, safe bunker when the hurricane is roaring

And even when that hurricane might happen to be me

He'll minimize destruction and clean up the debris.

It's Not About The Dog

Living in the boonies, I may have a different view of Gov. Noem's self-immolation. For anyone who has been on vacation under a rock - she's put out an autobiography (for a very loose definition of a work that's supposed to be non-fiction) with some questionable claims, but the one that seems the oddest is that she shot her 14 month old hunting dog for being too... well, frisky? 

Now... death is a part of life out here. At some point, we've all got to go. And considering that guns are a basic tool of the trade for a farmer/rancher/cowboy, if an animal has become a danger to others (or to itself), a simple, merciful, quick shot to the head beats chasing them around with an axe or breaking their neck. But this dog wasn't a danger - it was just annoying her. She has tried to make it better, mentioning that the dog broke up a bird hunt and chased some chickens - yeah. That's why you find a place where the dog fits in - you move Champion back to Delaware where he's not dealing with the stranger stress, for example. 

But this isn't really about the dog, is it? It's about a way of looking at life.  Someone isn't living up to your expectations - do you get rid of them, try to hide them, or find them a way to be successful? Do you minimize your time and effort, or do you minimize their suffering? I'm advocating for kindness - vote your conscience. 

Peace Through Inner Howling

Sitting here with my pups, just chilling. Roger is out dealing with the irrigation, so the chances are high that I'm the only human within ear distance. Living in the city, you don't get that opportunity - you hush the dogs so that the neighbors don't get bothered. 

Anyway - the dogs started howling when he left, and rather than letting it bother me... I let my inner bitch join in the chorus. I howled. I howled anger at the universe for my current limbo. I howled frustration at being held trapped in amber - I don't get the pleasure of walking among the living, I don't get the release of a freed soul flying away, light as air at last. It felt good... expressing myself.  Like a huge pimple of hate-filled bile, just blasting out into the atmosphere and being drained of any pressure against my essence. I'd like to say that my howl rendered the pack silent, in awe of my pain, but nope. They just continued to whine... but at least, they modulated the chorus to let me in.

These are probably the last days of my life. Well, for a certain value of last, that's true of all of us, but let's just say that I'm past the accumulating stages of the campaign and I'm firmly in the "throw everything you got at the sumbitch" portion of the fight. I've never really lived quiet by choice, but I've been dimming myself, trying to stretch out the meager portion of days left to me, a miserly way to exist.  No more. I'm going out with a bang, damn it.