Fed Up

Real change will never happen until you are fed up. I mean filled to the brim, on the verge of the cup running over. Can’t take it anymore so stick a fork in me because I’m done. DONE! Once you get to this level, hold onto your seat because things are about to blow up and in the best possible way. At least that’s what I’m really hoping for.

When I say to you this has been a long time coming and I’m beyond ready, I 1000% mean that. The last 6 1/2 years of my life my health was hijacked and I landed on a runaway train with a one way ticket to hell on earth. My poor health landed me in a massive hole and many people doubted I’d ever be able to climb out of it, including myself.

But then one day, I caught a glimpse of my old self in the mirror. Just a tiny little glimpse. Just enough to wet my appetite. Enough of my old self to know, I had to get in there and find HER. It was absolutely critical to me being able to make any progress. I could not and would not move forward in my own healing if I didn’t go get HER. So, I decided it was time. Way past time actually. It was up to me to save HER and bring HER back no matter what it cost. HER life literally depended on it.

It’s time to remember who I am. It’s time I truly start my OWN PATH to healing. I have been following the doctors orders for years. Yes ma’am. If you say so. Take 2 of these and call you in the morning? Got it! Refer me to my 12th specialist and sign up for whatever they order? Yes ma’am! Have another surgery. Remove another organ. Go to physical therapy. Stay out of the sun. Rinse repeat. Rinse repeat. Rinse repeat. Stab me in the mother freaking eye. ARGH!!!! And here we get to the title of the post, Fed Up.

I’m fed up with the lies. I’m fed up with the bull shit. The scams. The greed. The money loving whores that are BIG pharma. I’m over being a cog in their wheel and never ending system of deceit, being fed their outrageous lies. Take the magic pill and life gets better. Don’t take the pill and life could get much worse. Play into your fears. Let them rule your mind and heart. It never freaking stops. NEVER!!!! I’m now stuck on this perpetual merry go round and there’s barely a flicker of hope that I will ever be able to jump off.

The polypharmacy situation I found myself in after years in survival mode, being shuffled from one doc to the next, was a complete and utter disaster that no one in particular was managing. Then I defied all the odds and survived Covid and Covid pneumonia in both lungs, followed with a ridiculously insane year fighting multiple disastrous health problems from long Covid. Nurses always wanted to provide their commentary on my ridiculously lengthy medicine list. I could feel their disdain, their judgment. Did they not for one second stop to consider every provider I’d seen? What said provider diagnosed? What they prescribed as my treatment plan? Did they actually think I wrote those scripts myself? Give me a break! Where’s the accountability of all the providers that wrote all those scripts? There’s none. Nada. Zero. Zilch. And it’s not like I blame the providers per say. They are also victims of our wrecked medical system. A different patient every 15 minutes doesn’t leave much time for digging into the nitty gritty of things, especially with a patient like me.

Add being medically gaslit on the regular as a chronically ill human to the top of the shit sandwich please because God knows every single one of us spoonies has dealt with this. The next yay-who that dares gaslight me in a medical setting is going to get a piece of my mind. If you’ve journeyed on any road even remotely similar to the one I’ve traveled, you too feel the insult and hurt and frustration over the asinine behavior of some doctors and medical personnel. I literally had a cardio nurse tell me Lupus is a fad like Gluten Free. Moment of silence please because I deserve that for not beating up that idiot right then and there. IDIOTS, every last one of them, that cares to throw out comments of disdain or judgement without one ounce of compassion or empathy. And the cherry on top is they literally have no clue how insulting their behavior is after everything I’ve been through medically. Wow, just wow.

Then top it all off today, and boy howdy this one is a doozy, I left my Emgality injection pen out last night to administer. I normally inject into my belly but I was having abdominal pain and nausea so I was not going to do that. I went to bed, forgot about the shot until today when I saw it sitting out. Long story short I had to call the drug manufacturing company to find out if I could still take it or if it was bad and needed thrown out. I’m talking to some ding-dong that doesn’t have a clue about anything and keeps putting me on hold unnecessarily. I used to work in a call center. I’ve worked in more than one. I know how they work. This jerk wad wasn’t fooling me. And I told myself no $14/hour call center employee is telling me whether or not it’s safe for me to inject this med or not. No way buddy. Times up. Next please. I’m taking back my power and learning to make informed medical decisions for myself. No more putting my life in the hands of others who are complete strangers and know nothing of my journey. It’s on me now and it feels great.

I just can’t do it anymore. I can’t play the games. I can’t subscribe to the bull crap. I can’t eat their crap sandwiches. Nope, not anymore. I ain’t doing it. And no one can make me. My days of being the 100% compliant patient are way over. I am no longer a zombie running in blind faith forward with their treatment plans not giving a thought to it myself. Those days are gone. Thank the good Lord himself.

I am awake again. I can see. I can smell. I can even hear despite having profound hearing loss in my right ear. I am me. I am HER. SHE is ME. And ME is ready for this fight. I have FOUND HER and I could not be more happy!

I’m ready to get off as many of these meds as possible. I’m ready to expose the drug companies and insurance companies for their greed and scams. I’m ready to no longer be a cog in one of their billions of wheels running inside my little exercise ball like a hamster on a wheel with no destination except making the greedy ass holes that are big pharma and health insurance more and more money while they make me more and more sick. Enough. I’m done. It’s finished. Time to find a new way and hold those accountable that need to be held accountable.

But, it’s not really finished. It’s not. Not even close. There’s so much more progress to make. There’s so much more I want to achieve. I can’t stay where I am so I have to go. At the same time I have to live in the reality that a lot of it isn’t going anywhere. At the end of the day, I’m still sick. This still sucks bad. Every day is still ridiculously hard. Myself and my family are impacted daily by my health and that will likely never change. There’s no magic pill to cure me. Nothing will make this go away. This is my life. This is my reality. It’s no game. And I’m tired of being toyed with.

I hope my fellow Spoonies will recognize their power and take it back like I did. It’s up to us to carve out the best life we possibly can. We have to work through all of our anger and frustration so we can come out on the other side, healthy in new ways, even if it’s not necessarily our physical health. A strong mental game is so critical for us. I have learned that positivity and making my mental health a priority has been key to me finding joy in life again. No, it won’t heal me, but man will help me to enjoy my life more. And that’s what I’m looking for, a better quality of life with focus on my peace and joy and loving myself and others well. I hope you will join me on my crusade to improve healthcare in America.