Chronic Illness

There are a lot of reasons we don’t go through with our intentions. When I started this blog I had a pretty good idea of what I wanted to do, and how it was going to get done. I’ve been to Larry and Penny, Oleta State Park, and several Places in the Keys. I have notes and pictures on all of them. I’ve been a dutiful little blogger with my info gathering. But then I hit a wall. Something I love to ignore, but cannot avoid. My congenital condition. And honestly guys, I’ve never been so terrified of anything in my entire life. And I was once a young Cuban child on the other end of a chancleta. Nothing is scarier than a chancleta, ASK ANYBODY!

To backtrack a little, my husband’s grandmother and aunt came to visit from Chile. They are fun, wonderful, hilarious ladies and I’m sure we all gained a million pounds for the month they were here. We went to all the beaches and the malls, they bought everything in sight, and I used the outings as excuses to gather material for this blog (blogger level: pro?). It was in the middle of this party train that I had been able to get an appointment to see a specialist for what I have.

Chiari malformation is in no way rare. 1 in 1,000 people have it. Uncommon maybe, but not rare. It’s difficult to diagnose because you need to do an MRI to diagnose it. Not only is that procedure expensive, meaning insurance companies don’t like it, doctors don’t like zapping their patients unnecessarily. When the most common symptom of Chiari is headache, and the condition itself isn’t that well researched (it really isn’t) a regular doctor, even a neurologist unfamiliar with the condition, will diagnose something else. It’s very common. I myself had been diagnosed with stress headaches due to menstrual problems as a teen. Yes, that really is a thing. Is it really real? Who knows, it was real to the doctor who diagnosed me. It’s been two years since the last one, but I used to get migraines in my face so badly that I would vomit and the blood vessels in my face and eyes would burst. I would end up looking like something out of the Walking Dead. Fun stuff. Now it seems my brain has traded that for sudden stabbing pain in my eyes and temples, like someone ramming long thin needles made of ice into me repeatedly. I do not recommend the experience. In fact if anyone ever offers, just decline politely and walk away.

Anyway- I knew my original diagnosis and I was pretty comfortable with it. 7mm herniation of my brain, nothing too serious, no really terrible symptoms, though the headaches were bad, and the left side of my body has started to hurt more than usual. My left shoulder has been hurting pretty badly for over a year now, with no medical professional being able to give any reasonable explanation (or any real fuck, to be perfectly honest). It feels like the bones are twisting and trying to break on their own, and the muscle in the shoulder is as tight as a rock, but they can’t find anything wrong with me…(insert annoyed, passive aggressive sarcasm). But I’m still pretty mobile and maybe with a med change and some physical therapy I could get some more mobility back and really tackle my 4 parks a month plan for my blog.

I’ve been really excited for this blog. Researching parks, festivals, weather. Looking up types of sneakers that are good for my condition. I bought those tight lycra exercise pants skinny girls wear to take naps in! A new-ish camera off of Amazon. It even has a strap, hot damn! I was going to hit this party train hard and milk it for all it was worth.

Then the long awaited day of my appointment came.

Before anything, I need to mention that my wonderful and fabulous neurologist, Dr. Alameda from UMBH, is in downtown Miami, in the hospital across from where my grandfather spent the last four months of his life. My grandparents raised me from the time I was a year old, and my grandfather died two years ago. That had been the first time I had seen the hospital he had died in since then, and it was not a good feeling. By the time the nurse admitted me into the room to take my vitals I was visibly emotional along with my initial nervousness. 7mm herniation don’t usually require surgery, but irrational is as irrational does. That nurse, by the way, was a wonderful and fabulous person. I wish I could remember her so I could thank her by name. Lovely, kind woman. She got my husband when she realized I needed him.

Guys. There are no words. I have no way to convey to you the utter shock, the feeling of terror, when my doctor brought up my original scans and his eyes went wide as saucers. As he, with with a floored look on his face, uttered a quiet ‘wow.’

7mm, they originally told me?

Try 16mm.


16mm of my BRAIN is herniated at the top of my spine. Guys, I’m a jeweler. I know how freaking big that is! That’s almost the amount of wire needed to make a size 6 ring. I haven’t stopped shaking since I heard him tell me that. I mean, it could also be the new meds (which by the way make me high AF), but all I could do was sit there and stare at the computer screen as he showed me multiple times how big the herniation was, while holding back the intense urge to both scream and cry. He then went on to point out that my spine is deformed. While normal spines have a curve, mine is straight. And the spinal canal, which is normally a 12mm opening, is 10.5-11mm, which causes lots of problems with spinal fluid flow. I also have degenerative disc disease. He ordered a bunch of tests and scans that I have to do this month. Then I get to see a surgeon to find out if I need, how he phrased it, ‘immediate brain surgery.’

I have been trying to process all of this since the 19th of last month. It feels like I have a time bomb in my head. One that I KNOW will go off, I just don’t know when. I won’t know for at least another month where I need decompression surgery. And honestly, the surgery doesn’t always help everyone who gets it. So I don’t even know. I’ve never been so scared in my whole life.

The party train finally went home, and as much as I was sad to see the ladies leave, I need this quiet. How do I process this. I made a joke the other day, and it was pretty bad. My parents didn’t want me so much that when they made me, they made me badly. Bad joke. Not very fair, I guess. But sometimes bad jokes are all we have to get through the reality that our genetic code wrote us wrong.

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