Astro Medical Advocates

I have existed on this planet for 37 years and in that 37 years, I have endured 40 surgeries; 39 of them have been in the last 11 years alone.

As a teenager, I tore the meniscus in my left knee – this was my first surgery.

At age 26, I shattered the fibular sesamoid bone in my left foot, from running. For those who don’t know, the sesamoid bones are two tiny, pea-sized bones in the bottoms of the feet. And I shattered that little pea-sized bone into 7 pieces. I used to be an avid runner, personal trainer, and weight lifter; and this surgery was the beginning of the end, of my personal training career. About a month after the surgery to remove my shattered sesamoid bone, I received my hypermobile Ehlers-Danlos diagnosis.

Over the following 6 years, I would go on to have 11 orthopedic surgeries, 2 brain surgeries for a VP shunt, and a lumbar surgery, to drain excess spinal fluid.

At age 31, I was diagnosed with craniocervical instability (CCI) and at age 32, I began the journey of fusion, to stabilize my spine. Between 32-33, I had 3 cervical spine surgeries, where I ended up fused from skull-C4, and 2 lumbar spine surgeries, due to tethered cord syndrome.

At age 33, I seemed to regain some functionality and the day before I turned 34, I was able to RUN an entire 5k. I trained so hard and I accomplished my goal. The significance being, that I almost died from a post-op infection on my 33rd birthday. So running that 5k, one year after that, meant everything to me. However, 6 days after the 5k, I fell and tore my ACL, MCL, calf muscle, and meniscus in my left knee and required another surgery to repair the damage. And it wasn’t long after that knee surgery, that I fell again and damaged my cervical fusion. So at age 34, I had 2 more cervical spine surgeries that left me fused from skull-C6.

From 35-37, I had 3 more cervical spine surgeries to remove hardware and clean out infection, another 6 orthopedic surgeries, 3 surgeries to repair an anal fissure and fistula, a hysterectomy, and a bronchoscopy.And most recently, just in the last month, at age 37, I had a portacath placed in my chest and had an emergency cholecystectomy to have my gallbladder removed. It has only been a week since the cholecystectomy and I’ve been home from the hospital for 3 days. The pain from this surgery has been brutal; there’s something about the pain from abdominal surgeries that is unexplainable. I’m very lucky to have access to sufficient pain control, but often, there’s many people who don’t have that privilege.

Unfortunately, I know this is not the end. My skull-C6 fusion isn’t fused in some places and is collapsing in other places. After spending over 2 years trying to find a neurosurgeon to take my case and being thrown around like a hot potato, I am finally a Mayo Clinic patient and I have an appointment in August, to meet with the complex spine surgeon and discuss surgical options. There will be more cervical spine surgeries in my very near future, that will hold greater risks than any of my previous surgeries. I will likely reach 45 surgeries, before I even turn 40 years-old. All this time, I’ve been desperate to return to my life as I knew it, but I’ve begun to realize that, that life is long gone. That part of my life has come to an end; but this part of my life is only beginning. The hell that I have been through and that I’m still going through has given me a very unique set of knowledge, experience, and skills, that allows me to be a powerful advocate for other chronically ill or disabled folks. Healthcare shouldn’t be like this. I deserve better. You deserve better. We all deserve better. Our lives are worth more than a payday for billionaires.