Well, this certainly is a shitty year and I hate to add to the shit, but I got some updates.
I thought about doing a video, I thought about blogging but I can't ever seem to find the words in that moment or I overthink them so I figured I'd do what I do best and tweet cuz I can't control what my fingers say lol
I get too honest and that's really what I need to do. There's this quote from John Green's A Fault in Our Stars that has always bothered me because it's too true for me.
I smile. I show up. And no matter what I never let anyone see my illness, pain, grief, exhaustion.....whatever it is I push it down and I do what needs to be done, I become what others need me to be and what I feel I need to be in that moment.
So for the most part, people see a pretty damn opinionated, strong, stubborn, goofy, and slightly off her rocker Johnnie. I've gotten so good at it, at compartmentalizing and pushing things down, that sometimes I forget that's what I'm doing. I start believing that I'm all good.
Ya'll know my health has been going downhill since last year. I was diagnosed with GBS and I have Lupus, along with several overlapping conditions that have made my life hell but like I said, I'm stubborn, I manage and some may say I make it look easy to be survivor.
But very people get to see me in the depths of my despair and pain. They can definitely tell you that it's not easy for me, especially this year. I'm struggling more than I let on because I have lost too much to even put into words and the hits keep coming.
this last weekend, the partner and I went on a trip to give my spirit rest and get me out of the apartment since the only time I really get out these days is for doc appointments because of the risk of covid and my weak ass immune system.
Saturday, everything that I've been pushing down and putting away to deal with at another time, hit me all at once and I had my first mental breakdown & a panic attack all at once while in the parking lot of a chili's waiting for our food.
It's been years since I had a full-on mental breakdown. YEARS. It was 30 minutes but it felt like an eternity and how my partner was able to bring me back, I don't even know. Thankfully, I was also able to reach my therapist after and things got put into perspective for me.
Especially when my partner told me "You don't always have to be the tough girl. It's okay to be upset, to cry....you don't always have to be strong". This is something I say a lot, it's okay to not be okay, but apparently, I think it's true for everyone except me.
I try so hard to seem okay, to believe I am okay because the thing I have always hated is to be considered weak and incapable, I hate having limits so I push mine way past breaking points lol which is why my body hates me.
This year has been hard and it's not getting easier. This year, I lost my Uncle Bruce to cancer and my Uncle Dale to Covid19. I almost lost my aunt but she recovered, my cousin and his wife recovered. I have lost friends to Covid and friends who lost loved ones.
I have lost friends to suicide, one in a horrific car accident & learned that an acquaintance was killed by police in Denver this past weekend. I have friends who are sick and it all weighs on me because there hasn't been a moment to grieve, much less breathe before the next hit
And my health has been in the toilet. Over the last few months, I have been undergoing a lot of testing to figure out why my health is deteriotating the way it is and nothing definitive has been discovered.
And today, I was almost late for our show because I got a call from my doc about some troubling results from my last round of blood tests. My kidneys and liver are not doing too well. I was rattled but you'd never know.
But now here I am confessing all this because it's practice for what I have to do next which is call my folks because I have been trying so hard not to worry them but it's looking pretty serious at this point and I don't want them caught off guard.
Honestly, at this point I am not surprised. My kidneys and liver have been to hell and back and have had to work so much harder than other kidneys and liver. I have to make a lot of radical changes in regards to my well-being and it's not going to be easy.
But as always, I'm up for the challenge and ready to do what I need to in order to be well, happy; to survive and get back to trying to thrive.
In the meantime, please buy my merch because I still need to afford rent, bills and my meds. I need to sell at least 150 tees to do this and so far because I've been pre-occupied, I've only sold 16 so far this month.
I know this is another point of stress for both my partner & I, because my shop is our main source of income & the only safety net that we have and that's pretty terrifying as we try to figure out what's next for us considering my health is dictating every move we make right now
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I don't talk a lot about mental health these days because mine has been in the dumpster for the last 4 years 🤣 and I'm still learning to navigate new realities and I know a lot of my fellow disabled folks know exactly what I mean.
But before September, #SuicidePreventionMonth ends, I do want to share a few things because I think it's important that people understand that even when it seems that you are voiceless, powerless, and that nothing you do matters....YOU MATTER!
What you do matters and it sends ripples through the universe that change the world in ways you may never know about. And sure, that change might not go viral or be splashed across the news, but the impact of that change, no matter how big or small, MATTER!
We are going to be pushing our gofundme pretty hard as things are getting dire. We've been scraping by on my art and tee sales, some donations but our rent has gone and we were barely making it as it was because of my medical bills and our credit card debt from last year.
When we started our gofundme it was to help pay off the credit card debt from my mom passing. It was 10k and we had it down to 6K when I lost my health insurance and we had to pay out of pocket for my meds and healthcare while we appealed.
The gofundme helped us pay rent and of course I had my art and tee sales but we didn't always make enough to cover our bills and had to use the credit card. The balance by time we won the appeal was up to 11K, we havent used this card since but the interest is a killer.
Learned a valuable lesson today! Went to go make a payment on a medical bill and set up a payment plan. Something seemed off because I've paid bills for the same procedures before, and this was a whole different website. So I called the hospital to see if it was legit.
It's a legit third-party payment service used by the hospital, but the bill itself is not legit because it's already been paid by my insurance. So, I asked what was up with that and apparently, this company is notorious for sending bills out before insurance is billed.
The hospital told me to disregard it, but I was curious, so I looked up the company on the Better Business Bureau, and yikes. Why hospitals would use a company that seems to bank on patients just paying the bill even though it's already been paid through their insurance is wild
My partner has been laughing at me cuz I have to admit that I am fascinated by the whole Gomez vs Bieber drama and how they aren't even really involved just collateral damage of their fandoms trying to pit them against each other.
The way I see it and from life experience, sometimes the forever you imagine isn't the forever you get or the forever you actually want.
I feel this is the case with Selena and yeah, it may have caused her major heartbreak, but in the end, she got to grow up. She's an award-winning and well-respected actress, singer, producer, entrepreneur, and philanthropist. She got to mature and explore her full potential.
And nothing happens during in-person appts that can't be done virtual. Even if they need our vitals, most of us already have to monitor at home and can do that virtually as well.
In-person appts, unless you are having procedures done, is 30 min to an hr of sitting in a waiting room, being called back and sitting in a treatment room for another 30min to and hr for the doctor to come in and see you for no more than 5-10 min.
Yesterday, Mike J. Marin (director of the Smudging and badass AFP) got to meet Randy & Samantha 🤣 he was looking around the apt & was like, who's that?
The Partner looked at me & said you explain it. I was "You know how White people have random photos of Natives?" I didn't have to say anything more cuz Mike got it & was cracking up. 🤣
Randy and Sam have graced our wall since July of 2021, worth every penny of the $36 we paid for this sacred piece of a culture we've long been fascinated by.