Tale of Two Zebras
Welcome and Thank you for joining us. We are not doctors and we do not give medical advice. We DO share our personal experiences good and bad and what has worked for us. Why do we call ourselves Zebras? Good Question. When medical students are learning how to diagnosis patients in general, they are taught to think of the most common reason for the illness. The rare diseases are just that, rare. So if it looks like a horse, it's most likely a horse. BUT, there are rare illnesses out there. They are the Zebras. Both Amberlyn and Ann have the hypermobile type of Ehlers-Danlos Syndrome (EDS). There are 13 subtypes. You can learn more by visiting the Ehlers-Danlos Society website: https://www.ehlers-danlos.com.
Ehlers-Danlos affects every system and part of the body. Patients are often sick and see many specialists. That is where the Tale of Two Zebras comes in. Amberlyn and Ann share the EDS diagnosis and several comorbidities but their paths to diagnosis and with treatment are very different.
With such different experiences, we hope we can relate to a large and diverse number of other Zebras and offer an understanding community.
Tale of Two Zebras
Chronic Illness Grief
Of course approaching the one year anniversary of losing someone very important, our thoughts turn to grief. In this episode we discuss grief as it pertains to chronic illness patients and even try to apply it to how the doctor's feel/act.
We've also added a resource to every discription which is the most elaborate checklist of symptoms associated with Ehlers-Danlos. You have to school a bit past some technical jargon but the checklist is there and easy to read.
We're on YouTube too: https://www.youtube.com/@taleoftwozebras
Amberlyn aka Mrs. Labeezy's Amazon Must Haves includes some of Ann's loved items too:
https://www.amazon.com/shop/mrs.labeezy/list/1U6RAYC0SJK4T?ref_=cm_sw_r_apin_aipsflist_aipsfmrs.labeezy_NQXZZ7SVJ2PSF3EZ700Y&language=en_US
Zebras are the rare type of spoonies often affiliated with the Ehlers-Danlos patients. Please check out the website: https://www.ehlers-danlos.com
Here is another checklist of common issues with EDS: https://www.orthopt.org/uploads/Management_of_Hypermobility.pdf
If you'd like to be a guest, please reach out to Ann and Mrs. Labeezy at TaleofTwoZebras@gmail.com
Giving credit where credit is due: Christine Miserandino revolutionized the chronic illness community by sharing her Spoon Theory with the world on her blog: https://butyoudontlooksick.com Because of her contribution, those suffering with chronic illness are often referred to as "Spoonies" and we often refer to energy stored and expended in units of spoons.