You know that person in your life. The one who always has a dramatic tale of woe? The one who you tire of hearing from because all they do is talk about their health? Because honestly all that doctor talk is quite depressing. And I mean, you hate going to the doctor. You just went last week and they made you wait 30 minutes past your appointment. But, you gave them a piece of your mind, and you’re just not going back. You are way too busy anyway. You have other things to do, and a LIFE. So you’ll get to it when you get to it.
So, it might be a little hard for you to process that your friend doesn’t have the ability to make the same choices. And that one doctor visit, with the 30 minute delay, they do that several times a month. A 30 minute wait is a rarity. Typical time round trip, including traffic and wait – often 5 hours.
And over time you might have less and less to talk about with them. Because, they missed the party, or cancelled on dinner. They are so dramatic. You’ve had that wrong with you. Sometimes you have to get up and keep moving. They spend too much time being sad. What “trauma” could they possibly know?
While the Zebra is the Symbol for Ehler’s Danlos Syndrome- a group of inherited connective tissue disorders- it also speaks symbolically and metaphorically to the Rare Disease Patients we encounter daily. In our house it is PTEN Hamartoma Tumor Syndrome, or Cowden’s Syndrome, and Hypermobile Ehlers-Danlos Syndrome, for now. With over 7,000 Rare Diseases, it is not “rare” to have one. It is rare for them to be properly diagnosed, managed, and understood.
From National Geographic (BLUE PRINT IS CUT FROM THE ARTICLE)
ABOUT THE PLAINS ZEBRA
No animal has a more distinctive coat than the zebra. Each animal’s stripes are as unique as fingerprints—no two are exactly alike—although each of the three species has its own general pattern.
No two are exactly alike…
Why do zebras have stripes at all? Scientists aren’t sure, but many theories center on their utility as some form of camouflage. The patterns may make it difficult for predators to identify a single animal from a running herd and distort distance at dawn and dusk. Or they may dissuade insects that recognize only large areas of single-colored fur or act as a kind of natural sunscreen. Because of their uniqueness, stripes may also help zebras recognize one another.
Stripes may help them recognize each other….
Population and Herd Behavior
Zebras are social animals that spend time in herds. They graze together, primarily on grass, and even groom one another.
Plains zebras are the most common species. They live in small family groups consisting of a male (stallion), several females, and their young. These units may combine with others to form awe-inspiring herds thousands of head strong, but family members will remain close within the herd.
They can combine to form a herd, or a small group called a “dazzle.” Seems fitting though…
I used to be social. I mean not overly social. I never traveled in large groups, but I used to dine out. I used to see friends. At least sometimes.
I learned of the old concept taught in medical school many years ago when we were starting to live this overwhelming life full time. It goes “When you hear hoofbeats, think horses, not zebras.” The professionals we look to have been trained to explain us away.
Our medical system is so deeply broken, that our best and brightest are in debt they can barely see past, and in shackles to the facilities they must work for, who are often managed on bottom lines and drug companies pockets as they overbook them and take away the time to look at the whole patient. These doctors are often cognitively capable of doping their job. They are just not allowed.
Some theories on the progression of that quote can be found clicking this link.
But the reality is this. We are Zebras. In this rare disease community at large, we are a herd of them, as many as 10% of the world’s population.
( And other Rare Facts here… https://globalgenes.org/rare-facts/)
And we are trying to get treated by many doctors who have been trained, for whatever the reason, to categorically deny the existence of zebras!
It’s easier to diagnose and treat a horse I suppose. It is easier to open the text book, or the app and find the segment on their current malady, remedy it, and send them on their way.
I rarely meet a zebra who doesn’t WISH they could be a horse. We don’t want to be hard to diagnose and treat. But, we are.
I am currently in my 11th month treating a foot injury.
I fell at work and it was handled to the letter of the law there.
My insurance company denied the MRI I needed for my pain. I waited and walked on it for 2 months. When I could stand the pain no longer I received a diagnosis of a partial lisfranc tear, a zebra type of foot injury if you will. I was put in a boot, taken out of work and rested. Then I was taken out of the boot, not because there was proof of healing, but because I’d been in it too long.
A second opinion told me to be patient.
My local podiatrist running point on the case has been wonderful.
I have seen him every other week since March.
It hurts. Still.
I tried Physical Therapy and was sent away after 5 visits because he felt something else was wrong.
I tried ignoring the pain and walking through it. It got so much worse.
Another visit back to the second orthopedist left me feeling like a fool as he told me it was all good.
An MRI 2 days later showed stress changes in the cuboid bone, another “zebra” foot injury.
Unfortunately, those results came my way after 6 days in Orlando.
The boot was on again. This time with a scooter.
Another opinion and another MRI in September progressed the fracture to “non-discplaced” cuboid fracture and sentences me to another 10 weeks in the boot.
My original podiatrist, a stand up guy, suggested Hospital for Special Surgery. He could not get another MRI approved. My insurance had tired of me trying to get better. He thought HSS had a better shot.
In the mean time I had to come out of the boot. Not because the pain was better, but because there is only so long you can stay in before you have other risks.
Countless hours trying to schedule, I ended up with an appointment 10/31. His diagnosis was made without ever having me take a step. “You have too much pain in too many places.” Go see pain management. My husband strong armed him into ordering another MRI, which he did. Except for reasons I’ll never know he ordered only the forefoot…
The results of that MRI showed swelling, chronic fracture of the sesamoid, and a neuroma(that one is fairly common) among other things. He backpedaled a great deal when he called with those results.
My foot is in no shape to return to teaching – yet.
I went to neurology locally. Prior to me getting my sneakers off he diagnosed me with a pain syndrome, because “it has to be.” I did a nerve function test, was told to take a “tri-phase bone scan” and seek pain management. Again, no exam.
So, I scheduled the bone scan and started looking at pain management. Except no one at Hospital for Special Surgery will treat me, even though their doctor was also sending me. And the one specialist I was referred to locally does not take my insurance. I am awaiting an answer for another suggestion. My second call to the local office was at 9 this morning.
I have a ‘hail Mary’ pass going to a PT tonight who I PRAY will think he can help.
It sounds luxurious to be a zebra, right? Spa treatments all day. HA! Because what else would you do when you’re not at work?
It is easier to think someone is being lazy. It is easier to think they don’t care, or they aren’t trying. It is easier to find the green grass in someone else’s yard.
It is easy to judge. To say someone is “taking advantage.” It is so much easier than hearing the truth. Often the truth is hard. And just not as interesting.
I can assure you I have been schooled once again in the value of the lesson “Everyone has something.”
When you are rare, you are left on your own. A lot. Doctors will not, or can not, or are unable to troubleshoot an abnormal/multidisciplinary diagnosis.
I will wait. I will continue to seek answers. I will pray that all the bones in my foot stay in one piece. Because this, this was supposed to be the “normal” injury in the house. It was “just a fall.”
But, apparently as I’m learning, when you’re a zebra, you are a zebra through and through.
Thankful for my “dazzle…” You know who you are.
And some days I feel like its even a little more unique…