I was recently in the hospital in Miami for diagnostic testing from Monday til Friday. I have been fairly private while working on rebuilding my life and finding peace. My health has been a challenge lately, which I finally feel like I am in a place to open up about it.
I sold my home last week and didn’t even get to sleep in my new house, but only a couple nights. I absolutely hate being in the hospital, but this time I was a solid 3 hours from home and everyone I love.
Being in the hospital takes a huge toll on my mental health, especially since I have major depressive disorder. I am looking forward to putting so much heavy shit in the past where it belongs. But—being in a small room, attached to wires and stuck in bed while a screaming roommate a curtain away is fucking torture. I left feeling worse than I have in a long time due to shitty processed food, not getting my heart medication the first day, nor other daily meds. I was also double dosed on potassium and went from low to high. There is no sleeping. I felt like a science experiment.
I do my best to keep my mind in check, but the past several years have beaten me down. I purely just want peace, health and happiness and yet here I am constantly fighting for it. I am grateful for my kids, my man, my bestie, and all those who have reached out while I have been mentally shut down, hours from home in the hospital, worried about not only just my heart—but now my brain (and everything else, of course). This mama bear just wants to be home.
It has come to the realization that I have a very severe form of Ehlers-Danlos Syndrome. Please never take your health for granted. I have never in my life known what being healthy is. I am a genetic mutant, miraculously still here. I literally fight to be here.
I haven’t shared much about my recent health snapshot. So here it goes:
May 2022 was my 2nd open heart surgery. I had an aortic valve replacement with a tissue valve. During that time, my blood was pumping through a machine. This alone is a risk. At some point during or very soon after the surgery, I had a stroke. Unfortunately, after begging multiple physicians, I was dismissed again and again. I was seeing sparkles in my vision, 24/7. It wasn’t until September 2023 when I got an MRI of my brain, only to find the scary truth. I was right. Which means: finally these doctors can take me seriously. I moved my entire cardiac team to Orlando. Here I am, creeping on 2 years of seeing fireworks, shooting stars, floaters, blurry spots and occasional vision loss—and I am finally being heard. It’s unacceptable.
FYI- my vision is a beautiful 20/20 and was cleared in perfect health by TWO ophthalmologists. @visualsnowinitiative shows great examples of what I see.
I had a second MRI in January 2024, and in comparison to the September 2023 report: the multiple spots on my brain were unchanged. They did not get better but fortunately not worse.
I go to Miami to see an amazing neurologist because in my small local area, I am too complex of a patient. The first neurologist I saw said I was out of his scope—that he had no idea what to do with me. I waited 4 months to be told that.
The EEG during my recent Miami hospital admission did rule out seizures. I had multiple MRIs: Brain Orbit and MRA (angiography) of the blood vessels in my brain. My neurologist believes I could have multiple vascular anomalies in other systems, due to the nature of EDS affecting connective tissue. The MRIs had the same findings as the previous ones: chronic micro hemorrhages, meaning ongoing small brain bleeds.
I also had an echo to check my heart, which my previous ones were okay. Suddenly I have a scary echo report stating the possibility of a mismatch for my new aortic valve. I can’t help but wonder if this could be the link. Though, I cannot even fathom going through (or even surviving) a third open heart surgery. However, my hope is that this was an error or misinterpretation. Otherwise, I have another valve (tricuspid) that is leaking more and Grade 1 diastolic dysfunction. I plan to follow up with my cardiologist to clarify.
Side bar: My ankle avulsion from 3 weeks ago is still questionable. I was playing kickball and sprained my right side (wrist, shoulder, knee scrape) but I destroyed my ankle and tore ligaments. It is still discolored near my toes and super fucked, but I can put a little pressure on it finally. Again, due to EDS, this injury is alway much exaggerated with someone like me with hypermobility. I go extra.
At this point, nearly 2 years of seeing stars every minute of every day, I have come to the acceptance of another new norm. I still advocate for myself and plan to keep fighting to be here—I just wish it wasn’t so hard sometimes.
What I can control is my outlook on life and I am so grateful for where I am today. I fought very hard to overcome a life of trauma, abuse and chronic illness while being a single mom fighting to live. I have learned how to set boundaries, leave toxic situations, to love again, to take my power back and to heal.
I am learning to accept that I can’t be cured, that there is no bandaid or magic pill or procedure to fix me. Many of the young women (who have the more severe form like me) in my Ehlers-Danlos online groups have passed away. The doctors may as well have told me, it is what it is.
I’m going to cherish everything and live my best life. Book the trips, hug your loved ones, tell those who don’t have your best interest to “get fucked”, and learn to heal so that you can give your loved ones the best version of yourself.
If you know me at all, you’ll know I am always hustling and back to the grind. If you’d like to show support or love, keep an eye out soon for Wildling Apothecary 7 year anniversary relaunch. I am minimizing my shop down to my top 10 products. I have made inventory for my 2oz Pain Balms and everyone’s favorite: Healing Sprinkles. You can subscribe to my blog or keep an eye out on social media for a March launch. I am also offering social media management, marketing, copywriting & branding, photography and graphic design and content creation services.
I am so empathetic to your situation. I know first-hand the struggles of multiple illnesses. I was born with heart defects, so I have been fighting to stay alive my whole life, too. I wish I could take away all of your pain and suffering. All I can say is that I trust you are on this Earth for a very important reason. I’m sure your beautiful children feel blessed that they have you in their lives. Stay strong my friend. I also get very discouraged and wonder how much more my body can take, but we just have to cherish each moment we have and try to grab whatever happiness we can while we are here.