When I first got sick, I immersed myself into the online world of Chiari groups. I didn’t so much chat and comment, as lurk, absorbing fear and paranoia about what was going to happen to me, based on the terror stories that I was reading. Then, one day a person said something profound: there are no happy success stories here because healthy people don’t sit around all day and bemoan their lives; they are out living them.
It made me less afraid. For about ten seconds. It worked as a mantra that I had to repeat, steadily to myself, like a tattoo, but it consistently does work in the short term. Mostly because there are real horrors with any illness. Specifically, with Chiari, people die in surgery, they die of aneurysms, strokes, brain swelling, meningitis, infections, or any other weird brain crap (that’s the scientific term).
But, they also die of pain medication. They die because of lack of pain medication through uncontrolled and untreated pain, committing suicide in desperate agony. Even the CDC has admitted their misapplication of regulations in opiate dispensations, causing untold consequences ranging from patient abandonment, withdrawal, and even death. Of course, Chiari patients can die from overdose too, both from accidental overdose in a misguided attempt to control pain, and from addiction.
However, one of the most insidious ways that Chiari can kill patients like me is crippling depression. It’s no secret that I battle this particular war.
Hopefully, that serves as an explanation of my constant blips of absence. I have been off and on depressed. It’s difficult to climb out of it. Constantly. It’s a battle of daily and epic proportions. It could be made easier through many avenues, such as medication and therapy. I hate the medications; but I did recently go back to therapy. The medications make my mouth dry and they are always so hard to get right. And, getting to know your therapist takes a while before you make any real progress.
Anyway, I thought I’d try to keep up a bit better (I know I’ve promised that before; but, we’ll see). In an attempt to catch us all up, I figured I’d list-form a bunch of random updates on my health and life, otherwise you’d have to read a dissertation:
In June two exciting things will occur: I start my pre-requisite courses for an MFA in Creative Writing at Mother-Fucking Harvard! This is one of the reasons I thought I’d try to catch up and stay on top of this. I have to get the “crazy” out. So, to my Grandma, who always said, “you should write a short story about that,” and to all my colleagues and friends who always told me to write a book: I’m trying! Get off my back! Thanks be to the VA and the GI Bill that I have remaining from my first MA. Who knew that my stint in the AF would net me two master’s degrees, a husband and a kid? Pretty sweet deal.
Also, in June, I’m having stage two of a terrifying surgery: a Fulkerson Osteotomy. My orthopaedist (what a pointless, and I think, pretentious, “a” right?) already harvested the miniscule three cells (no joking) of cartilage I had left, to clone in a lab, creating a new sheet of brand-new knee cushion, to replace the 99.999% missing cartilage under my knee cap. In June, he will break my shin bone, lift up my knee cap, put down my new cartilage, re-align my misaligned knee cap, and bolt it down to my newly broken leg, in its correct position. Supposedly, this is better than a knee replacement because I still have “good bone” left. I was able to be convinced of this because I’m clinically insane. However, after stage one (the harvesting), at which point it was too late to convert to a replacement, the doctor said, and I quote, “phew, once I got in there, your knee was quite a mess…worse than I thought…a pot-hole even.” Thanks. Really. Thanks.
Because of my ridiculously crumbling joints (neck, shoulders, knees…and toes?) and several other symptoms that seem lame to discuss, pain management wanted me to see a rheumatologist. Yay! More doctors! I finally went, a year later. Now, I get to go to labs, constantly, and give lots of blood. Last week, I got to go to an ENT and give a lip biopsy. I have had two stitches INSIDE my mouth for the better part of a week. Did you know that’s the worst feeling, literally ever!?
Speaking of stitches inside my mouth, I have now experienced what it feels like to attempt to remove a stitch from INSIDE my mouth, without Novacaine. I have also experienced what it feels like to be the loudest screamer in the Urgent Care clinic, and what it feels like to cry without realizing it, only feeling the tears on your cheeks, after they sit you up. As a side note, after digging for several minutes, they did NOT get the stitch out because I had to tap out. I feel no shame in this. Lots of blood vessels and nerve endings inside the lip.
I had the world’s worst colonoscopy, which would’ve made a wonderful long story, but I’ll give you short details. Mean nurse treated me like a drug addict and actually pushed me into a wheelchair! I broke my toe (for real!) running to the bathroom during the prep, as only I could, by stubbing it on the molding separating the hall from the bathroom. And, the endoscopy scope gave me a fat lip that lasted almost a week.
I’m starting back up with Neurosurgery again. I’m scared so shitless that I can’t even put it into words. I was so afraid that I didn’t even bring the pain up to my pain doctor for almost two months. And then, I brought it up as “neck pain,” not even the pain I knew it was. Of course, the muscle relaxers didn’t work. Thankfully, she ordered an MRI anyway, and my record is now updated, and sent to UCLA. Probably nothing? Who knows? All I can think about is what if I have to do this, every three years?
Remember Mr. New Kitty? He’s not adjusting awesomely. Well, he’s okay, but since he’s been added to our family, Homer’s decided to pee outside the litter box, almost exclusively. Since Homer is 18 years old, he’s developed mild renal disease, which means he drinks a lot of water, consequently, he pees in large volume. This means our house smells vaguely of cat urine, all the time, despite constant cleaning. Behaviorally, we’ve done all the things, you’re supposed to do to eliminate this problem; so, we’ve got five litter boxes, on three floors, surrounded by puppy pads. Our house is a class establishment. In unrelated news, if you want a cat, we’ve got one available. Not Homer; he’s too awesome. The other one.
Bryon got promoted two below the zone to Colonel. This was huge news to us, but left us questioning where we would be living next year. Military families always are tight-rope walking with moves in the balance; but with colonels, it’s a whole new ball game. We had only just gotten to DC last summer and we were barely established. We just found out that we’ll be here two more years though, so we are a little relieved to be able to settle down some roots, despite it not being California. Collin will get to go to middle school with the same IEP, and I can at least maintain doctors for a little while, and not have to move eight weeks after major leg surgery. Phew.
By the way, these items are in no particular order…cat piss is, in no way, more important than my husband’s perpetual trek towards General Officer (one day, dammit!). Oh, and he may make it, and be all fancy and shiny, but if I make it through Harvard, I am just a shiny and important! Right?
Before the first stage of my knee surgery, I decided, on a whim, I wanted to be independent, and do something I always wanted to do, by myself. In other words, I briefly lost my mind, booked a hotel room, and mapped a drive to Philadelphia to go to the Mutter Museum. No one in my family wanted to go to this museum of death; so, I figured I’d go alone. For any true crime fan, like me, or person who is not easily grossed out, like me, it’s a glorious place.
However, true to my personality, I freaked the night before, and Bryon and Collin came along. Bryon had homework, and stayed at the hotel. Collin threw up. It should be noted that it was delayed car-sickness that made him barf, not that he was disgusted by desiccated penises (penii?) We also saw the Liberty Bell, and some other American blah-blah, and ate at the best Asian, but fully Vegan restaurant, I’ve ever been to. It was glorious, overall.
I know I gave up teaching in the classroom last semester; but, this semester, I quit entirely. It’s a done deal for me, I think. I don’t enjoy teaching online, and we can survive without the income. It’s often hard for me to grade in a timely manner because of depression, headaches or pain; so, it’s not fair to the students for me to go on. It was time. It makes me afraid to take on a new commitment like school, but I’m hoping that because it’s something I enjoy, it’ll be great!
Speaking of things I enjoy, shhhh, I have a creative project that I’m being quiet about. Only Bryon really knows the “topic,” but I do have a book idea. I’ve been reading lots of research material about it, and I’ve got pages and pages of notes and outlines. Finally. A real, fleshed-out book idea, instead of an idea that really hasn’t gone anywhere beyond a few little paragraphs, or a few pages. I’ve read several books so far, and I really think I’ve got something. We’ll see.
Collin has officially reached the pre-teen stage that marketing has tried to cuten up with the title, “tweens.” It’s horrible. Bryon says that kids get like this so that, when they are eighteen, parents are glad to shuffle them off to college. I’m beginning to wonder if that’s true. He’s still my awesome, wonderful baby at times, so I’m glad for those moments; but, when he’s tweening it up, Dear God, save us. The sass. God, the sass. And, I’ve not mentioned the pre-pubescent boy smell. His ASD aversion to texture makes him feel that deodorant feels “weird;” so, we have to force it on him, which means constant policing. Samesies, with shampoo and toothpaste. Funk, and not the groovy kind, is everywhere.
There are probably hundreds of tiny things I could talk about, or think of saying, but that’s what happens when I don’t write for a while! Come back later, and I’ll do my best to have more garbage to spew out! Maybe I’ll force fed some down here, regardless of importance!