06/30/2026
It’s the 6th anniversary of my most recent and wild spinal surgery in 2020!! I had to fuse my spine and skull due to catastrophic instability and degeneration that was causing my neck to collapse forward and essentially was strangling my spinal cord and nerve roots. I had two surgeries the same day: first on the front of my neck for ACDF C4 to C7, then on the back of my neck from my skull down to T2/3.
My very first surgery was in 1990 at age 14. I started having shooting pains down my body like I was struck by lightning, it would cause me to instantly collapse to the ground when it happened. Two weeks after finding this out I had emergency brain surgery for chiari malformation which was blocking the flow of spinal fluid to my brain, and syringomyelia which was a cyst down the inside my spinal cord.
It was a long and difficult road to healing in 2020, it took me three months just to be able to wash my own hair again, and a year until I could kind of function like a normal human. True and full healing from this took two years, and a lot of love and patience from my family and friends, and from myself.
In 2022 we moved from Beacon, New York to Mt. Lebanon, Pennsylvania and things were looking up, I had built up a lot of strength from packing and moving and was starting to feel a lot better… until I wasn’t. It’s kind of like my health just started crashing around me and I couldn’t figure it out. I had zero energy, almost all my joints hurt, waking up in the morning my hands felt like they were rusted shut, I was severely depressed, and everything just felt horrible. I went to every doctor I could think of, had every test possible, tried tons of different medication’s and injections to no avail. At that point I just figured it was part of growing older with my neurological issues and hypermobile Ehlers-Danlos syndrome, and this was just how life was going to be. I was alive, but I wasn’t living.
Then I had an artist friend send me a little message… had I looked into the possibility of perimenopause? The honest truth was no, it hadn't even occurred to me remotely. So I started reading about it, finding more information from women’s doctors, and it all kind of clicked. Could this be the answer?? I knew my next step was to try hormone replacement therapy. I went to the women's midlife center and got a prescription, immediately put my first patch on… and then got a massive migraine for three days. I couldn't do anything except keep an ice pack on my head. So I removed the patch and started to feel better. F**k. That's not how that was supposed to go. I was totally defeated and didn't know what to do next. I was also on nerve medication and antidepressants, and since I have a tendency to get bad side effects from medications, I thought well, let's get off of these meds because maybe there was an interaction. I tapered off, and a few months later tried HRT again. This time no headache. Win! By the end of my first week it felt like someone opened the curtain to a bright and shiny sunny day. My rusted creaky hands magically were functional again, the depression lifted, the brain fog got better, my energy was better, my muscles and joints felt better. Honestly it felt like I was 15 years younger overnight. YES!!! I'm not lying when I say HRT saved my life.
What I thought was only lingering effects of my spinal surgery, having EDS, and neurological/autonomic issues (which are debilitating in of themselves), was actually partly my poor body crashing from low estrogen. I couldn't believe it, and I truly felt so lucky that I discovered this information and found the right path to better health. It's so rare to be able to find a medication that helps so obviously and completely. When I look back I really do find it extremely unfortunate that not one doctor suggested that it could be perimenopause in combination with my other health issues. As with my EDS and autonomic dysfunction, I had to advocate for myself and basically piece all the symptoms together, and bring the information to the doctors to prove I was correct. It's crazy we have to do this for ourselves, but just illustrates the importance of health knowledge, paying attention to your body, trusting your instincts, and advocating for yourself with your healthcare providers.
I’ve been on HRT for a little over 2 years now, and even though I lost a few years of my health, I definitely feel like I'm back on track. I’m where I should've been 3 years after my fusion surgery instead of 6, but hey as with most things, better late than never!
