Zebra Files 40) Moving Forward

Moving forward- because reliving yesterday isn’t really an option.

These ideas are so much better Shared!!

I keep putting off blogging, even though it’s always on my mind, because there is so much to catch up on.

This is a dangerous looping point for someone with ADHD (It’s me- I have ADHD- or do I?), so in order to move forward I’m going to make this post a highlight reel, detailing the biggest points off the top of my head.

I’m going to miss things. This will be imperfect. I’m learning to be ok with that.

Highlight Reel

Imaging

When we started this journey, I was just beginning to get imaging done on my joints. Despite the fact that I have a connective tissue disorder, insurance insists that we must look at X-rays before they will allow MRIs.

I have had x-rays on my cervical, thoracic, and lumbar spine, left shoulder, lower back, both hips, and both knees.

I’ve had MRIs on my head/cervical spine, lumbar spine, and shoulder. We are trying to get MRIs of my hips and knees next.

Lots of arthrosis. mild bursitis, small labral tear.

Work

I am no longer working. My last day was in January 2024. It was hard to leave a job I was really good at, and I miss it. I don’t miss what it was doing to my body.

Disability

I have applied for SSA Disability, and my application is being processed. There are several glitches in the system that make it difficult to reach anyone with SSA to ask questions.

I have found the absolute best practice to be to drive to the field office in Fort Collins to submit any paperwork, or to ask questions. There are two security checkpoints, and usually an hour or so wait.

The average time it takes for them to make a decision is 278 days.

If you’re going, make sure your phone is charged, and you give yourself time/space to recover afterward.

In addition to SSA Disability, I’ve also filled out the application for the State. This was completed back in September. There are several other hoops and steps.

This office is also difficult to ask questions of, and I find it best to go in person as well.

Even in person, answers are really sketch about application status. If you submit paperwork online, it sometimes just gets lost.

Body

As winter hit my hips and knees got considerably worse. They make it difficult to stand, sit, or sleep.

I now get these painful cysts in my hands that come and go as they please.

My toes are so painful, itchy, and it feels like things are stabbing through the skin of the toe. There’s nothing there.

I’m getting intense headaches.

My tummy hurts all of the time- I had a colonoscopy and they said everything looked great. They weren’t available for me to ask questions.

My eyes get so blurry- but not all of the time.

I keep dropping things.

Walking gets exceptionally difficult.

What’s Abuse?

Life

In addition to navigating my way to my Ehlers Danlos diagnosis, I’ve been helping someone close to me navigate his own journey. I will be sharing relevant details here, because they are important, and zebras aren’t the only non-horses.

We will be performing for an Ehlers Danlos benefit on May 18th, and we hope to see you there.

I’m starting to write poetry again- some of which I’ll be sharing on here.

My apologies for the absence.

The reality of not having enough spoons is that sometimes things just don’t get done.

It feels good to be back.

If you have any questions, or if there is anything you’d like me to expand on, please reach out to me at ProtyusAGendher@gmail.com