life

I guess it’s Brain Awareness Month?

To be honest, it strikes me as a bit egotistical.

I mean, the brain is the only organ that named itself. Now we’re gonna let it decide it gets its own month?

Anyway, I’m not a fan of brains, personally. At this point in my life, I think I’d rather have a sort of undifferentiated network of nerve tissue, or just be some kind of sentient alien gas cloud.

For Alzheimer’s and Brain Awareness Month, I want to talk about what a complete pain in the ass it is to be properly diagnosed with anything neurological.

The trouble with many neurological disorders is that they often don’t have a nice, neat, non-invasive blood test that can definitively tell you what you’ve got in a visit or two. There might be a weeks-, months-, or even years-long pattern of behavior that you need to exhibit first. There might be some other symptoms that, at first blush, don’t seem like they’d have anything to do with your brain. They might need to take a bunch of pictures of your brain and then stick giant needles in your spine. It’s kind of a crap shoot.

This isn’t to complain about doctors, per se — when they hear hoofbeats, they’re trained to look for horses, not zebras. This approach usually works pretty well, unless you’re a zebra.

All my life, I’ve had what I thought migraines. I regularly felt crushing pains in my neck and head, to the point of being dizzy, hallucinating, and throwing up. Sometimes, I’d notice my hands leaving “vapor trails” wherever they moved, like some kind of bootleg Etch-a-Sketch. I had an inhuman amount of trouble seeing things in my peripheral vision during driver’s ed, to the point where I never properly learned to drive. I was told it was anxiety and I needed to manage my stress level.

I could hear what sounded like distant drumming in my ears. The pressure in my head sometimes felt like someone tightening a belt around my skull. Sometimes, the thrumming and drumming sounded almost whispery, like voices. I was told I was hallucinating and paranoid and I needed antipsychotics.

After awhile, I noticed that I had double vision. A person I dated at the time told me I was a hypochondriac, and I watched “too much House.” Around the time I lost my grandmother to brain cancer, a doctor told me that these symptoms might not be something I could just keep ignoring — in fact, they sounded a lot like a brain mass of some kind. I was uninsured and couldn’t afford the imaging I needed, so I languished in medical limbo instead. (Naturally, I didn’t express my concerns to my then-boyfriend. Why would I, when he mocked me for being worried and told everyone around us that I was exaggerating?)

A few years later, I noticed that I always seemed to have retina fatigue. My eyes seemed to keep impressions of whatever I looked at, for way too long after I’d looked away. I had odd flashing spots. I thought it might be from my new contact lenses, but, just in case, I downloaded an Amsler grid to see if my eyeballs were just malfunctioning somehow. Sure enough, the wavy, warped, and missing lines told me something really, really wasn’t right. After one episode where I wasn’t able to see anything and went to the ER, I was told it was atypical optical migraines and I needed migraine medication.

It was another three years and a cross-country move before I was actually properly diagnosed. After years and years of misdiagnosis, someone finally scanned my broken head (there was no mass) and stuck a needle in my spine (but there was an absolute shitload of extra spinal fluid). My opening pressure, the fluid pressure at the beginning of the spinal tap, was roughly twice what is considered normal — 29 mmHg (39.4 cmH2O) compared to 7-15mmHg (9.5-20.4 cmH2O). Whoops!

Your body has a lot of mechanisms in place to maintain your cerebrospinal fluid pressure within a range of ± 1 mmHg. Mine… doesn’t. For some people, this is because of medication — steroids, hormones, antibiotics, certain pain killers, and even antacids can all increase cerebrospinal fluid pressure, but it goes back down once the medication is discontinued. I wasn’t on anything at the time I was diagnosed. So, my case is considered “idiopathic,” and, in all likelihood, congenital. It will never leave me, I will never be cured. I’m stuck with it until I either go into remission, or die. Welp.

Munchausen Syndrome and hypochondria exist, but they don’t describe everyone that’s struggling with the medical industry.

Sometimes, you’ve just got a zebra brain.

Blog, life

Living my best life is sucking the life out of me.

Its 2:00 in the morning, and I am writing because I have, once again, destroyed my sleep schedule.

Well, not just my sleep schedule.

I have idiopathic intracranial hypertension. It makes me forget things, feel crushing headaches every moment of the day, occasionally lose my ability to see, and want to sleep basically forever. Left to my own devices, I will sleep for twelve hours and still be able to take a substantial midday nap.

Such is life.

Unfortunately, this doesn’t allow me much time for anything else. This doubly sucks, because what time I am left is also devoted to coping with the headaches, dizziness, anxiety, depression, and other trappings of having a head full of surplus brainjuice. Showering is tiring. Clothes hurt. On a high-pressure day, even holding my head up is more than my neck can manage.

Continue reading “Living my best life is sucking the life out of me.”

life

A small, helpful rock.

Chronic illness demands strange rituals from you.

Sure, you go to the doctor. You take what they give you, though you might find that you have to do so at a certain time of night, or with a certain type of food, or adjust your dosage based on the weather or time of the month you take it. You start developing the small repetitions that (hopefully) keep you functioning.

Sometimes, that isn’t enough. So you branch out — you start adding medicinal baths, special pillows, vitamins, herbs. You go to a massage therapist, maybe an acupuncturist. You stretch, meditate, and spray yourself with magnesium oil. Your house becomes a haven for therapeutic smells.

Maybe you go further still. You look up the meanings and properties of crystals, and leave little groups of them huddled on your shelves or nightstand. You draw sigils on your medicine bottles, and paint runes on yourself in arnica gel and muscle rub.

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All of this is to explain how I ended up with my favorite medicinal rock.

Crystal guides usually give the same set of properties for a given stone — you use rose quartz for love, amethyst for peace and relaxation, and so forth. I come from a magical background staunchly rooted in personal associations. I don’t believe it’s necessary or desirable to reinvent the wheel, but most of the herbs, stones, and other tools I use are ones that I have a personal history with, and what I’ve learned about them doesn’t always match what the guides say.

Selenite is usually used to cleanse things. You can keep it with other stones or tools, or use the little wands to clear negative energy out of spaces like a spiritual lint roller. One crystalworker uses them to help itching from bug bites and eczema. I used to keep a couple pieces of it around to keep stagnant energy from accumulating. Now? I use selenite crystals for pain.

I get terrible neck pains sometimes, a direct consequence of a rare, incurable  neurological condition. There’s no help for it. I’ve been given everything from massage, to camphor gel, to opiates, to tricyclic antidepressants, all to little avail. If the pain becomes bad enough, it means I need to visit the ER for an emergency lumbar puncture and more hardcore pain management (which is also why I have several opinions on how the opiate crisis is affecting the way pain is managed in emergency settings, but that’s neither here nor there). If it isn’t yet at the ER point, I just have to suck it up.

One night, in a moment of sleepless desperation, I picked up a rough selenite wand and pressed it to my neck. And it worked.

Now, I keep a smoothed and shaped wand of selenite in my bedside table, ready for all of the times when pain keeps me awake. I don’t need to do much with it, just pressing it lightly to the places that hurt is often enough to give me enough relief to sleep. Would I use it instead of evidence-based medicine? No, but I also haven’t met a doctor yet that objects to me having a safe, drug-free means of relieving pain. I still need to visit the ER when things become bad enough — I haven’t found any stone that can substitute for having about 15 mmHg of extra fluids siphoned off my brain, unfortunately — but this helps make the other days more bearable.

Sometimes, chronic illness makes you do things. You might give up nightshade vegetables, take up polyphasic sleeping, or begin carrying magnesium oil in your bag.

Or, you might befriend a small, helpful rock.