Friday, November 22, 2019

reflect.learn.grow. (rinse, repeat)

When I turned 40, I was already sick with my second primary chronic illness. Because I'm now approaching 13 year mark since the onset, it's obvious I've had a LOT of time for reflection. Here's a peek into what I've learned:
With the abrupt and harsh onset of this condition, I was thrown into a demographic about which I had previously given little (almost no) thought. It wasn't even evident at first. I'm relatively sharp. I call myself "street smart", (I say relatively, like if you are a complete idiot, then next to you, I'm SUPER sharp.) so it didn't take long to realize that people REALLY think it makes you stupid when you get sick. The patronizing looks and advice, the overwhelming majority that not only imply, but blurt the fuck out loud that they don't think I'm TRYING hard enough to heal myself. From an illness for which there is no cure. I'll itemize those measly attempts I've made to improve my life. Which spun on a dime, without my permission, into a fucking abyss. The shitty sneers and side-eye looks I get with my handicap parking pass, and now with my cane. The impatience I seem to ignite, just because I'm a bit slower when I move... it hurts.
I saw that the demographic into which I had been thrown, was largely ignored and rejected. I once WAS one of the ignorant ones. So I can tell you this is FACT. Terms like Pre-existing conditions, chronic illnesses, and disability had become the revolving hashtags, spinning in my thought bubble. I suddenly realized how FUCKED UP the entire healthcare system was because I was LIVING IT EVERY DAMNED DAY and prior to the entrance of my OWN condition, I had never given much though to this stuff at all. For the 40 years I was lucky enough to consider myself "healthy" even though the connective tissue disorder is congenital, (which means BORN WITH) I only experienced the cool stuff, like flexibility for body knots, and creepy bends, until the onset of puberty, which was, in my opinion, the on switch for the bad shit to join the party. (That's a story for another time, because I've only begun to look back and ponder the entire line of events, that never felt connected until suddenly they ALL were.)
The next thing I know, I'm just yearning to advocate for this demographic. Now a real member of the club, some atrocities occur to me for the first time. I realize the pre-existing conditions are commonly conditions that were with us when we arrived earthside. So WHY was the system designed to punish us?
The healthcare system tells me that a lifelong condition, over which I have NO control, for which I didn't 'ask', nor did I "self-inflict with a bad lifestyle", etc etc., has now made me essentially ineligible for anything that could provide me with any real quality of life. What the bloody hell is wrong with that picture?
 I couldn't get it out of my mind. I had already EXPERIENCED the shit, as the brain aneurysm at age 23 has since excluded me from getting health coverage, unless thru open enrollment. (until A I had my very own pre-existing condition. 
I spent years with the inner feeling of turmoil, smoldering, but I felt it becoming a pressing matter. 
What's crazy is that it's become bigger than myself. At first I was timid, I recognized my privilege had kept me so ignorant. I also wrestled with the hypocrisy of suddenly "caring" about these issues just because they now affected me. THAT is THE definition of privilege. But here's the thing. When you KNOW better, you DO better. The longer I'm a part of this AMAZING club, I'm feeling that I've suddenly turned my heart inside out, and I not only want to be a voice for myself, and others like me, but also others maybe NOT like me. Pre-existing conditions? Check. Chronic illnesses? Check. and now? Disability. Mobility aids. Discrimination. Stigma. Judgment. Stereotypes I had blindly accepted as truth. Until they weren't. I suddenly feel that I'm on a whole new trajectory, and it's already taken the lead, I'm just following along.
Do me a favor. This blog is REALLY important to me. My being transparent is VERY purposeful. It's also very SCARY. Please be kind, even if you don't like what you read here. If you DO relate to anything, reach out. Disability is isolating. 
I'll remind you that my blog is a monologue. I'm here because I felt largely alone through the first decade of illness. I thought perhaps ONE person might see this some day. If anything I've written here can ease a single concern for that person, then it's enough. 
Peace.
Here's the thing. I just tried to proof this before posting, and the truth is this: I'm too exhausted due to today being my 12th day of a high pain flare, as well as a nerve problem in my right hip making it impossible for 2 days and counting, to bear weight on that leg. EVERY time a flare creeps on, I get a nagging fear that this is my new baseline. Then I worry. Painsomnia takes over. I'm now a living zombie. I therefore CANNOT comprehend my own script. Good luck, and good night. 

Friday, October 25, 2019

The past 2 years

2017 was a year of rude awakening, betrayal, corruption, lies.
2018 was a year of grieving the losses, and acceptance.
2019 is a year of change, and learning to be happy again.
2020..... oh, you wait, gurl..........

compliments that actually DID hurt...

I was remembering that two of the most flattering and undeserved compliments of which I am aware, are also two memories that make me choke up, even after all of these years....
The first was this scenario: 
SHE and I are hanging out on a random weekend night. We cross paths with HER friend, HIM.
Much later when HE and I are friends, he drunkenly confides:
When we met, I thought you were a stuck up bitch. I even told SHE when we met. But then SHE told me (loosely translated except the most important words) Oh, gosh, give Bex a chance. She's "one of the coolest people I know" (see? I'm choking up again...) And HE did. Then HE and I were friends for a long while. But we aren't really friends any longer. Huh. Guess I AM a stuck up bitch. 
And SHE? Well, I think SHE changed her mind. I wasn't really cool at all... 
See how a compliment CAN hurt? 
Scenario deux:
I'm dating someone. It's a horrible unhealthy relationship, as every time he drinks, he is EXTREMELY verbally abusive. (But he never hit!, so ... of course, he'd change for ME, right? ugh. I was VERY naive!)
We were at a club, all slithery drunk; that's what we DID, as I said, VERY unhealthy... I lived on the dance floors then, big hair glued in place, when a stranger approached my boyfriend to tell him that I was a "beautiful girl. No dude, MODEL beautiful" ... That was another painful compliment that I learned about as my drunk boyfriend relayed the story later that night, the words in quotations seared into my memory as he SNEERingly hurled them AT me, then told me he guesses I am a whore. I wasn't. 


Thursday, October 10, 2019

are you okay?

If you began to date a man, who immediately stuck a copy of " The 48 Laws Of Power" into your hands, and insisted you must study and learn them like a college student... including heavy HIGHLIGHTER use...would that be weird? Asking for a frenemy...

Monday, August 5, 2019

Did you KNOW this about birds...?

So, today I was able to personally confirm the urban legend regarding birds, and their offspring. (This is kinda cool, very sneaky, but cool, nonetheless.)
I got a few pics of said event as well. Check it out. 
Here's the youngster. Guess the bird!
 And here's "daddy" feeding the youngster! Dad's a cardinal! 
Spoiler: Youngster is NOT a cardinal!
 There are certain birds that will lay their eggs in another bird's nest, so the host will hatch and raise the babies for them! 











Thanks for stopping. Have a great day!

Friday, July 19, 2019

when I can't

I'm not sleeping. My right hip is burning. When I try to walk, or stand too long, there's a nerve getting pinched, and the result is a SEARING BURN, that shoots down my leg. No warning, just that fucking zing, and the hip threatens to give out.  I'm finding my 'hammer' a very necessary tool right now. Where else but here at 3 a.m. might I admit that I'm feeling a mighty case of the "woe-is-me" bullshit. Knowing it's bullshit doesn't stop it from flooding my mind when I'm feeling low. My conditions are degenerative, which means that the most painful joints are the most damaged. Worn out. Those words are haunting. I'm just over 50, but I'm struggling to keep up. I need to remain mobile, I accept that in order to DO that, I'll need the recommended mobility aids. But really? A walker now, because the hammer is no longer sufficient? Is it okay to feel a bit of self pity now and then? It makes me feel such shame.
 The most difficult lesson I've learned is that although it's MY brain, and there's such a thing as mind over matter, my brain also has a mind of it's OWN, and that boggles me... **If you weren't aware before this entry, I suffer with an anxiety disorder. When Richard was killed, it doubled down. The ranch fiasco kicked everything into overdrive. ** So, while I can TELL my brain that a panic attack is not a 'real' threat, my brain decides not to listen to logic, and the anxiety parties on. That's what is happening right now. 
I'm AWARE that having scoliosis, degenerative disk, and spinal stenosis, will all contribute to the demise of my back and neck, but is it fair that I'm 52 fucking years old, and very aware I may be losing the fragile bit of  mobility remaining? It's happening so quickly, I'm claustrophobic. 
Please don't remind me that you "feel terrible" for me, I already know it. Who would rejoice this? 
I have to get it out, whether anyone sees this. It's a safe space for me... especially when I'm paralyzed with a fresh or long running fear, especially since I'm mostly unable to reach out to those around me. I live with the knowledge that (barring a medical miracle, or ten) I'll forever be completely dependent on my husband, my children, the govt... that's a big reality pill to swallow. No matter who you are. There are others exactly like me... if this might help a single one of them, it's worth the transparency.

Friday, June 28, 2019

Simple

I've found VERY quickly that many people are confused about my "new" self... 
What they're NOT understanding is that this isn't a fucking fad, I'm not trying to make a statement, etc. 
When I hit my 50th birthday, I suddenly realized I had been diagnosed a full decade prior with ME/CFS...
Upon reflection, I DECIDED that with the limited daily energy my body allows, I CAN NOT, and WILL NOT, spend that coveted energy on the BULLSHIT any more. It's a conscious decision, and I'm working REALLY hard to honor myself by no longer wasting a precious commodity that healthy people (I know this is true~ I WAS one of 'those people') take for granted. 
I've spent much of my energy on things that matter so little to me now. cleaning the house, doing laundry, washing dishes, cooking dinner, etc... have been significantly altered on my priority scale. 
I am aware that having my body essentially fight itself from the inside out has likely reduced the life expectancy for me. I decided I want to spend my energy doing things that ENRICH my life rather than reduce it. Simple as that. (yeah right, huh? nothing's ever simple, I'm still needing occasional self-reminders to keep practicing this behavior)
So, when we moved into this rental after the catastrophic betrayal at the ranch, I began to sort through every belonging I had. I began to question whether any of those belongings either enriched, or harmed, my life. And I began to purge. And purge. And purge. 
I've been brought to an almost blissful mental state on the better days. (The REAL secret to life: rid body of rx meds, artificially scented anything, chemical cleaners, most commercial products for your skin/house/body then begin cannabis use!) I look around and see SO MUCH MORE simplicity.