One in One Hundred Million

An Update from Mayo Clinic

You know when you feel like you have something figured out and then life decides to challenge that? Well that’s about where I am at right now. To be fair, I have never claimed to have had Body Grief “figured out.” Body Grief in itself is a continuous process, it is not linear, it is forever changing and forever flowing, but I swear I thought I was catching a break. Ha!!

I used to hate when people said “I just can’t catch a break.” It made it seem like life was just happening TO them. I didn’t like how it took the agency out of the scenario, because we all have agency, but privilege and perspective also need to be added to the conversation when discussing life’s scenarios.

And I think I am almost “getting it” now. Because last week when I was at Mayo Clinic in Rochester, MN I found myself saying those exact words, “I feel like I can’t catch a break,” and I immediately winced.

My ableist brain went to, “well Jayne others have it worse,” and yes, that is very very true and valid, AND, my story is also incredibly heavy. Maybe this is for my sake, or maybe this is to validate your experience as well but…

14 brain and spine surgeries

3 visits to Mayo Clinics

Countless Scans, procedures labs and tests

Monthly infusions

Harsh medications

Chronic Pain

Loss of Mobility

Inability to Drive

Loss of the life I wanted to live and the life my husband and I deserved

On top of crippling financial stress due to the US’s healthcare system…

That is all Body Grief. Just as Valid as the “biggest” and the “smallest” of body grief there is.

and I will say it….

I feel that we can’t catch a break.

So here is what we learned this past week at The Mayo Clinic!

I saw a total of 6 specialists while I was at Mayo Clinic. Unfortunately, and as expected, none of these specialists were Ehlers Danlos Syndrome informed. This was something my husband and I were prepared for, granted it is still very disappointing. The practitioners recognize EDS as something that is serious but none of them specialize in this.

Due to my extensive history of hemorrhaging and prolonged periods (9-14 day periods every month) the OBGYN specialist found multiple fibroids, abnormal thickened lining and based off of family history, diagnostic testing and my bleeding and monthly symptoms he highly suspects I have endometriosis or adenomyosis. Due my very complicated case, I cannot be on any form of hormonal birth control. See, four years ago I had Intracranial Hypertension, also known as Pseudotumor Cerebri, this is when your cerebral spinal fluid (CSF) increases so much so that it bruises the brain and the optic nerve swells and causes loss of vision. I did lose my sight and needed brain surgery. This is an incredibly rare disease and there is little if any research on it, and was one of the scariest and loneliest times of my life, and I have been urged to never go on any form of hormonal birth control again.

Therefore, my only option is a hysterectomy where we keep my ovaries. We will be getting the hysterectomy up at Mayo Clinic as this surgeon is a specialist in this surgery and has done this surgery on people with EDS in the past. We will be going through the belly because of my fragile connective tissues. The extensive bleeding that I am having is not only disabling my life and causing severe pain but it is causing bruising all over my body, it is causing my surgical wounds to open up and swell and it is not allowing my body to heal at all. The hope is that this surgery will drastically improve my quality of life.

There is an immense amount of Body Grief with this, and to be honest I haven’t even begun to process it. I will be removing the seed of life from my body. But in all reality, my relationship with my uterus is incredibly toxic. To be honest, I’m already tired of everyone who is jumping to the positive, because I know that if this was them they would be devastated.

When it comes to my cervical spine, it is a mess, I have spinal stenosis, which is a confirmed spinal cord injury, degenerative disc disease, sclerosis, arthritis, kyphosis and retrolisthesis. My Surgeon here in Charleston did a great job, it’s just my EDS that has truly wrecked my spine, and that my body has rejected the metal. Mayo clinic confirmed that all of the pain originating from my cervical spine will most likely be permanent and the metal remaining in my spine, brain and groin cannot be removed.

This is devastating for us, and means we stay on course with the treatment we are on now for the metal rejection, which is quite a RISKY medication, granted it is working and that is what matters. We will take the wins!

I was also diagnosed with Chronic Daily Migraine and started treatment for this, there are many treatment options for this, which is hopeful, granted most of my pain originates from the cervical spine.

My main doctor at Mayo Clinic was amazing, and I was so incredibly lucky to have family show up for me yet again. My aunt Patty flew with me from Charleston to Rochester and went to my initial appointments, then my sister Claire took time off of work and traveled up from DC to help out, my Dad took time off of work and drove up to Rochester, and my sister flew back with me to Charleston!

I was told that my case is so complicated that I am 1 in one hundred million and I swear if someone tells me how rare I am one more time I may punch them in the face!

But for now, I will process and grieve. That means, drinking my favorite coffee and coconut creamer on the porch with my pups, a nice stroll in the neighborhood this afternoon with my sister, and an order from my favorite bakery this weekend with most likely many tears and hopefully many laughs.

I am sending you all so much love as you all process your own Body Grief.