Help! My brain is falling down!

On March 21, I went in for an MRI. I was hoping for an answer to an assortment of increasing problems and pain over the last few years. And boy, did I get one. I was diagnosed with a Chiari 1 Malformation. In layman’s terms, my brain is falling down the back of my skull and into my spinal column. My brain is too big for my head, lol. It sounds scarier than it currently is. I say that, because the condition can be progressive. I learned that through experience.

It is a congenital condition, although I have my suspicions it could have been acquired from my forceps delivery. I can look back and see the condition over the course of my life. It’s the reason I have always tripped over my own feet, slurred my words when I’m tired, felt cold when others were fine, struggled to breathe when over-exerting myself (like actually breathe, like, at all, not just huffing and puffing). Everything I experienced was “normal,” but I had no idea that my normal was exponentially worse than everyone else’s normal because I grew up in a “suck it up, buttercup” family and doesn’t everyone lose their breath and get headaches after crying?? Turns out, not everyone can’t functionally breathe and they don’t get pounding migraines for hours after crying. I’m still wrapping my head around the fact that not everyone lives at a daily pain level of 4-7, depending on the day.

But I managed, with occasional bouts of burnouts, until I couldn’t anymore. It turns out there are some things that commonly make it worse, and I’ve had four of them: childbirth (twice); repeated trauma - I had a perforation resulting in cerebral spinal fluid leak as a complication from my C-section with the twins that was repaired with a blood patch in 2017; car accident - I was in a fairly significant accident with whiplash in 2019; and dental procedures - many of you already know that I had 4 traumatic dental surgeries within 6 months almost 2 years ago.

I now know that this condition is the reason it has felt nearly impossible to recover from burnout and the surgeries. Additionally, about a year ago, I was diagnosed with Ehler’s Danlos Syndrome, a connective tissue dysfunction that impacts every system in my body, and can make my condition worse, as it means the ligaments around my spinal column have less support. As a result, my days are very difficult and painful. I have had to work less and less traditionally, as I never know when I will have a flare up, and have been doing gig work, which isn’t reliable and entirely dependent on my ability to work that week. I have pounding headaches every day, and my tinnitus rivals the sounds in the room. The brain fog and fatigue are utterly unreal. Not to mention issues with neck and back stiffness and neuropathy in my hands. Most days I feel like I am moving and thinking through mud, and despite my desire to be doing the things I need to do, only rest helps. I’m no longer able to just suck it up. It just makes me worse faster. This is why many of you haven’t heard from me in too long. It’s a terrible kind of triage, doling out what little capacity I have across my life when I want to give so much more. Thank you, my friends, for loving me from afar when I can’t be present.

I am in the process of applying for disability, but this can take months. Years. Additionally, I can’t afford the treatments that would alleviate the symptoms for my condition. Things like massage therapy, specialized chiropractic care, and float therapy. Not to mention I can’t afford accommodations that would improve my and my kids’ quality of life. Things like regular house cleanings, lawn care, and meal delivery services.

In the near future I will be meeting with a neurosurgeon to get further testing that my insurance hasn’t been covering, to determine if I need brain surgery, or if I can continue to be monitored for now. I am hopeful I will be able to delay surgery for several years, but there is potential costs around surgery that I am not equipped to handle (see above re: working abilities the last two years).

The plain fact is that, like many of us, I have been severely hit by health catastrophes at the time of the worst inflation we have ever had. I’m barely scraping by while giving it my everything. I know I could get better faster for me and for my kids with community support. If you can donate even a few bucks, or want to sponsor or volunteer for one of the services I mentioned, I would be exceedingly grateful and humbled. And if you can’t/don’t, I’m grateful and humbled you read this far.

I will keep you all updated as I learn more about what kind of treatment I will need.

Much love to you all.