Where do I even start??

I got waaaaay off my path and only because of a massive medical thing that happened over a period of several months, which then required me to halt all of my activities, did I realize what just happened! Isn’t it crazy how something you think and feel are so negative actually turns out to be the thing that opens your eyes? I mean, I literally could have expired, was arguing with the medical people about how I had to “get back to work “, which probably caused me more stress and lowered my immune system making everything worse? Possibly, yes!

Little did I know the havoc that was about to happen.

The worst part, if there’s a specific “worse part”, is that the “career” I was pushing so hard for took me away from what I love to do, writing and put me into enormous debt. I spent so much time and money, oh…and energy aka spoons, trying to get a set up that would allow me to work at the computer and not destroy my body or leave me sobbing in bed by the end of the day! I spent way more than I made trying to get the best chair, a desk that i could use while reclining in bed, even buying a thing that goes on top of my desk that would allow me to sit or stand. It didn’t matter because I couldn’t do either while staring at the computer screen and typing on the keyboard.

I can honestly say that I can live the remainder of my life never seeing another one of these.

I have heard of people who had no spine issues talk about how their desk job ruined their backs, and they didn’t have the same connective tissue disease as I do.

That’s the thing though. Our bodies compared to a non Ehlers Danlos person is like an old rusty truck going down the worst road in the world. The kind of road that will launch you out of your car window if you’re not holding on while going over deep bumps and potholes! It’s like being on an intense, twisty, roller coaster all day and all we did was sit at a desk for an hour and wash some dishes. But since most of us “look fine”, we must be exaggerating.

At least I was healthy enough to light the Channuka candles.

I don’t know about you, but it’s a vicious cycle I keep wandering into that has to stop. As much as I know I can do anything based on my personality, skills and experience, my body is just not capable. It just isn’t. Maybe I need to take all of my imaging from all the x-rays and MRI’s and put them in a photo album labeled, ” Dear Lord, not again!”. I can flip through the images, after visit summary from every doctor visit, and add the total dollar amount that each, “I can do this” moment has cost me. Maybe it would work. The other problem is I am so ADD I’d lose the album and forget about everything that would remind me that my unique body isn’t made to be still, or in any one position for more than 20 minutes….unless if course I’m laying down. From my research I have no desire to do ANY type of work that requires me to lay down to earn a living. I can’t even lay still.

By now I’m over this.

I have heard many of us who are trying to have a quality lifestyle and possibly even work to pay for the gas for the various doctors visits, co-pays, medications, supplements, and any item that hints to us that we may get a tiny bit of relief, is actually accelerating our bodies decline, increasing our pain, slipped vertebra and disks, wearing away at our joints, increasing inflammation, and at least for me..fast tracking me to more fusions. Yet, we still try. As my favorite Mandalorian would say, “this is the way”. I’d add, “this is the way of the zebra”. Why is it the way of the zebra?

My theory is that aside from the obvious need for money to pay for things, we are usually invalidated by our doctors, therapists, the ER, friends, family, spouse, workplace, co-workers, and possibly our place of worship. The other reason? We are just bad-a$$ and we don’t back down from the challenges thrown at us! We pull our joints together, after we’ve cracked them all of course. We put on our finger, wrist, elbow, neck, back and knee braces like it’s a coat of armor, (we know it’s holding us together), we put a smile on our beautiful faces after hiding our, I cried all night from the pain, red, puffy eyes, and we push ourselves beyond our limits knowing that if anyone lived in our bodies for just one day, there would be parade’s thrown for us as others realize how courageous and strong we are. They’d be in awe of not just the physical strength, but of our mental and emotional strength. They realize we are actually super powered. Our strength is fueled by every invalidating experience we’ve had to absorb. At least for awhile, eventually someone in our lives gets a kink in their neck causing the “scales to fall of their eyes”. They start to feel a teensy sense of our reality and that’s when the, “omg, I had no idea! How do you do this day in and day out”, comments start rolling out of their clenched, this is the worst pain ever, teeth. We get a small bit of validation which usually lasts about a week or two past their last twinge of pain. Then it’s back to normal.

I obviously just went down a rabbit hole, but hey, that’s how I write. I love to write, I love to share and teach what I’ve learned in the hope of helping anyone. I thought that’s what I was doing when I decided to become a state licensed health, accident & life-insurance agent. The money I spent trying to get comfortable enough to work 4 hours propelled me forward trying to earn it back. Instead I spent money on what I just mentioned and more on treating the various injuries I got from trying to work for 4 hrs a day. It can feel discouraging and depressing. Almost enough to give up, but zebras don’t give up! Don’t ever give up..promise yourself you will never give up. Just try something else.

Now you may be wondering how my side track to this insurance agent cost me my health? Well, mostly because I was so focused on “showing up and succeeding “, I was ignoring some pretty big signals my body was giving me. A rupture in my gut, blood in my….., poisonous spider bite on my eyelid not once but twice, post operative infection which may or may not have caused the infection in my blood, 2 ER visits, 2 surgeries and 2 weeks of IV antibiotics that I gave myself at home through a midline they put in my bicep is what finally got me to hit the brakes, remove all stressors and completely focus on my healing. It was a blessing in disguise, allowing me the time to do some serious inner discoveries and evaluations.

I’d love to explain more, however my fingers are screaming at me. Ever finger is aching from typing the out. I’m going to stop for now and will do a follow up as soon as my fingers give me the okay.

If you enjoy reading I’d greatly appreciate your comments. Perhaps you will show me your support with a follow and by sharing with everyone you know..well, a few people or even one person is appreciated. I also have a YouTube channel that I abandoned but am working on getting that going again. I’ll put the link somewhere on here as soon as I figure out how.

https://youtube.com/channel/UCIUczv4eJmLjaFRadZf_PEA I hope the link works.

Thank you so very much for your support. I wish you health, wealth, prosperity, and laughter for the rest of your days.

Sending light & love- Maile

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