Why I’m Doing This


About a month ago, I almost had a stroke at the age of 26.  After a few days of fairly obnoxious neck pain and, I assumed, unrelated cluster headaches, I started to get tunnel vision with the headaches.  After that, my co-worker and my boyfriend convinced me that I might have a pinched nerve or pulled muscle and that I should go see a doctor after work.  We went to a walk-in so prestigious as to have the name “Doctors Express”, mostly because I was the least concerned of anyone and figured I’d just really slept on my neck wrong the weekend before.  The doctor openly admitted he had no idea what was wrong with me, but that I needed to go to the Emergency Room immediately.  I thanked him and rolled my eyes on the way to the car.  For one, I didn’t have insurance, and I also had every intention of going to work the next day, so an all-nighter at the ER hadn’t been in my plans.  They didn’t seem to think it was a very big deal, either, since it took me an hour to even see the triage nurse, and another two and a half hours before I was admitted.

What followed was another two hours of morphine and explanations that I was probably just spontaneously getting migraines for the first time in my life, and that the neck pain was probably unrelated.  Something with nerves or muscles.  I mostly just wanted to get home since, at this point, I’ve already called out of work and figured I might as well make the best out of the night and get drunk with my boyfriend. But hell, I might get some fun meds that would at least make the neck pain a little more bearable while it got better.

I finally get to meet the doctor, who looked like a silver fox Ken doll.   (Sidenote: Attractive doctors make me nervous.  I dislike telling them about my last bowel movement.)  He seems to think that, yes, it’s probably just a coincidence of muscle strain and migraines, but that it might not be, so I should use all the funds I have as a teacher’s aide to pay for a CT scan.  Hell, let’s add some dye.  Why not?

A few morphine shots later, and I find out that I have a dissection of the vertebral artery of my neck (read: the walls of one of the four major arteries in my neck was basically separating from the vessel, making the track too narrow).  After an MRI and MRE, I find out that it has caused fibromuscular dysplasia, or what they colloquially call a “string of beads” in my brain.

FibromuscularDysplasiaThat is, the blood vessels in my brain were spasming, causing them to look exactly like a string of beads.  Not surprisingly, this causes some pretty bad headaches.  The nice thing is, if I’d waited a tad longer to go to the hospital and thus get blood thinners injected through IV, I would have had a stroke in my occipital lobe and, best case scenario, lost my eyesight.

While I smoked cigarettes and was on birth control, neither of those things apparently caused it.  They were baffled that I didn’t wear heavy helmets or do cocaine, since I was far too young to have a condition like this.  Some teeny, shy, awkward little 1st year resident who came to talk to me at 4AM (yeah, it had taken over 12 hours to leave work and finally get into a hospital bed) noticed that I had Ehlers Danlose Syndrome, a fairly rare connective tissue disorder.  Up until then, the only way it had ever affected me was that I was super bendy.  Apparently, ligaments aren’t the only flexible things you get with that syndrome, and my arteries were also prone to “bending” too much.

Now, I’m an emergency case getting MassHealth pretty much automatically, and I’m so rare (the rare dissection caused by a rare variety of a rare syndrome) that I get to see some pretty prestigious neurologists and geneticists.  But I’m also on a pretty solid amount of blood thinners, so it’s even more important to watch my diet.  I’ve already quit smoking (one month smoke-free tomorrow) and stopped taking birth control (boo), so now it’s time for some Vitamin K1.  For those who don’t know, K1 is all the green stuff that you have to trick your children into eating and is not exactly my favorite type of food.  If I eat a salad, it better have some crazy stuff on it.  That means my diet is about to get pretty damn creative.

So here goes nothing.

Sidenotes: At this point, I’m only tracking my K1 intake, which can be neither too high nor too low.  So don’t worry, I do eat more than one thing per day.  Also, the majority of these recipes are NOT mine, so I have provided the source for anything I’ve used (though they’re usually tweaked because I’m picky).


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