Welcome Back!

Posted on by ManOfZebra

I’m working on some new long-form content to accompany some of the larger posts going up on Instagram, keep watch there and on my blog for more! An absolutely insane amount of changes, progression, treatments and more have been tried, failed, replaced since my last post on here, my goal is to get you caught up, and hopefully help some others avoid and find helpful some of the information and experiences I’ve had in the process. It’s always my prayer that my EDS/Mito/POTS/Dysautonomia/Autoimmune journey is never wasted, even if it only helps one person avoid some of the challenges I’ve faced over the years and especially recently, but that’s enough to fill a literal book on it’s own, so let’s just get you caught up first then we can get into the here and now!

💚 ManOfZebra 🦓

Preparing for Surgery with Ehlers-Danlos Syndrome

Posted on by ManOfZebra

Preparing for a simple hand surgery with Ehlers-Danlos Syndrome is an elaborate production involving several specialists, countless hours on the phone, explaining then re-explaining several issues, allergies, nausea, time of surgery in coordination with food and medication, what medications that can be taken before surgery and then determining what medications you can live without. Spoiler alert, probably not very many. Then there are the cardiovascular implications of general anesthesia that needs to be cleared with a cardiologist, kidney disease limitations cleared by a nephrologist resulting from several kidney stones passed in the last few years, a story for another day. And, lastly, lengthy conversations with the doctor performing the surgery.

Two big anxiety-reducing blessings here thankfully, the first, my surgeon is not only familiar with EDS, but he has also actually performed hand surgery on EDS patients before. Second, the surgery is at Riley Children’s Hospital. Put simply, Riley. Is. Home. its where I was admitted for the first time and where I have spent 7 of the last 8 ER visits, but that’s also a story for another day. If you have ever been to Riley and spent time there, you will know how much that place exudes warmth and compassionate care. At least I have the peace of mind knowing if anything goes wrong, I’m 100% where I need to be to get the best care with my own physicians.

The goal is to complete the whole hand surgery, removal of a cyst on my finger, and two steroid injections, without needing general anesthesia. With my next major concern being that the local anesthetic doesn’t wear off too quickly, another common EDS occurrence. Similarly, I only used local anesthesia when getting my wisdom teeth out, the dentist said it was the first time he talked to someone while he was removing their wisdom teeth. Anyhoozle, if you see this post before 5/14 at 5PM EST, say an extra prayer for me that everything goes well. I’ll be sure to let everyone know how things go.

P.S. This is an unplanned post, not part of the previously mentioned library, I just wanted to share what was going on and some of my brain contents before surgery.

See you next time,

ManOfZebra 🦓

Man of Zebra (Ehlers-Danlos Syndrome Type 3)

Posted on by ManOfZebra

Man of Zebra, a cute name, but what exactly is a zebra?*raises hand* an animal with stripes. Well yeah, but not quite. If you are new to the spoonie community welcome, there are plenty of… nope actually fresh out of spoons.

When dealing with complex health issues, diagnosis is always a crucial part of organized care. I have a severe connective tissue disorder called Ehlers-Danlos Syndrome but that’s a story for another day, Man of EDS LINK Coming Soon. Zebra is the American medical slang for arriving at an exotic medical diagnosis when a more commonplace explanation is more likely. It comes from the instruction a professor once gave to medical interns. “When you hear hoofbeats, think of horses not zebras”. It has wide spoonie meaning, but has especially found its home in the Ehlers-Danlos patient population. EDS can look like a lot of different conditions, Fibromyalgia, Hypermobility, and Arthritis and that is just covering a few. You see, those conditions are horses, and when you see an undiagnosed EDS patient, you hear their hooves, those hooves very well could be a horse, any of those previously mentioned diagnoses, or every once and a while that hoof is a Zebra, and an EDS diagnosis is given.

Follow me as I navigate the world of Zebra, and provide a perspective of a guy battling EDS and its comorbibities everyday. I already have a ton of ideas for posts I’ll work on in the future:

  • Man of Disability (Disability Application and Approval Process)
  • Man of Medicaid (All things Medicaid, including how to investigate home health aide waivers in your state)
  • Man of Kidney Stones (This one is horrendously self explanatory)
  • Man of Faith (Discussing how my faith fuels my drive to push forward and provides comfort in the down days)
  • Man of Pain (Chronic Pain and its effects on daily life)
  • Man of EDS (All things Ehlers-Danlos)
  • Man of POTS (Talking POTS and other heart issues)
  • Man of Dysautonomia (Talking Dysautonomia and its many complexities)
  • Man of Riley (Riley Childrens Hospital and the impact its had on my care)
  • Man of Physical Therapy (Working to stay strong while battling EDS)
  • Man of Occupational Therapy (What has worked in slowly strengthening my hands and avoiding tissue damage)
  • Man of Minecraft (How I’ve poured hours into a passion for Minecraft, Java Development and System Administration in an effort to distract from daily struggles)
  • Man of College (This will likely include multiple parts, ongoing struggles with school and some of the resources I’ve found totally invaluable)
  • Man of Technology (Where I was headed, what I lost along the way, and how that has influenced a course correction within the same field)

    Thank you so much for taking the time to read this, for the first of many, this is ManOfZebra, signing off. 🦓