Four Month Update

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.

 

Duh.

 

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.

 

Again. Duh.

 

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!?


How’s that for a hideous picture? Trust me, it feels even worse than it looks! I ended up in Urgent Care five days later for the stitch I didn’t swallow (yep, that means I accidentally bit one of them out). It was so painful, I thought it was infected. It wasn’t, but it was really icky. They trimmed it and tried to pull it out. It did NOT go well.

How’s that for a hideous picture? Trust me, it feels even worse than it looks! I ended up in Urgent Care five days later for the stitch I didn’t swallow (yep, that means I accidentally bit one of them out). It was so painful, I thought it was infected. It wasn’t, but it was really icky. They trimmed it and tried to pull it out. It did NOT go well.

 

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.

My fat lip from my endoscopy. Also from my endoscopy: I learned that my “heartburn” has been so chronic, and so bad, that I’ve essentially torn several small holes in the upper part of my tummy/lower part of my food tube. That’s what I’m calling it.

My fat lip from my endoscopy. Also from my endoscopy: I learned that my “heartburn” has been so chronic, and so bad, that I’ve essentially torn several small holes in the upper part of my tummy/lower part of my food tube. That’s what I’m calling it.

 

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?

Mew has re-named himself (his real name is Thor, but he prefers to be called Mew, as evidenced by his constant, incessant shouting of this word). He also begs to be cuddled, nuzzled and kissed, which makes it hard to dislike him, despite his encouraging Homer to pee on the floor.

Mew has re-named himself (his real name is Thor, but he prefers to be called Mew, as evidenced by his constant, incessant shouting of this word). He also begs to be cuddled, nuzzled and kissed, which makes it hard to dislike him, despite his encouraging Homer to pee on the floor.

 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.  

Homer says that he disagrees with Mew’s presence, and wishes to remind everyone that he is between 88-92 years old, and he shouldn’t have to tolerate whipper-snappers, at his age. He also wishes to remind everyone that he was here first and to kindly fuck off.

Homer says that he disagrees with Mew’s presence, and wishes to remind everyone that he is between 88-92 years old, and he shouldn’t have to tolerate whipper-snappers, at his age. He also wishes to remind everyone that he was here first and to kindly fuck off.

 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.

The only picture that you are allowed to take at the Mutter Museum. No photos are allowed beyond this point. Collin felt like he should pose in this ridiculous manner. This is  before  he threw up, by the way. Well, well, well before. And, for those who are wondering, I handled his vomit with aplomb and good parenting. I didn’t run away, or scream, or anything. I was awesome, considering how much I hate vomit.

The only picture that you are allowed to take at the Mutter Museum. No photos are allowed beyond this point. Collin felt like he should pose in this ridiculous manner. This is before he threw up, by the way. Well, well, well before. And, for those who are wondering, I handled his vomit with aplomb and good parenting. I didn’t run away, or scream, or anything. I was awesome, considering how much I hate vomit.


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.

This memorializes the single moment that Collin wasn’t asking for something, such as food, a trinket, or other such item. It was the best moment of the trip.

This memorializes the single moment that Collin wasn’t asking for something, such as food, a trinket, or other such item. It was the best moment of the trip.

 

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.

Look, it’s my sweet baby boy, showing Monkey his new computer. I have to will myself to see those moments shining through when he’s acting like his tween self 99.9% of the time these days. I take comfort in the fact that all the other parents I know are going through the same thing. I’m not alone. He and his peers are taking over the world, at the moment.

Look, it’s my sweet baby boy, showing Monkey his new computer. I have to will myself to see those moments shining through when he’s acting like his tween self 99.9% of the time these days. I take comfort in the fact that all the other parents I know are going through the same thing. I’m not alone. He and his peers are taking over the world, at the moment.

 

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!

 

 

 

 

 

 

 

Are YOU Chronically Ill?

I’m not gonna lie, this post is inspired by some nasty words that I exchanged with someone recently. Someone I know experienced an injury that has severely hindered her quality of life. This is still, of course, temporary, as it’s an injury, like all injuries.

The worst of injuries come with surgery, physical therapy, years of pain, arthritis, and debilitating pain. They come with giving up activities that you love, and they come with alterations to your life. I do not deny this. But, this is not all injuries; and most injuries reach a point of improvement, rather than a steady decline.

The debate arose about whether or not an injury was thus similar to invisible illness, or even chronic illness. There is no argument that chronic pain sucks. But, I argue that it’s in the same category of invisible illness, nor to chronic illness. And furthermore, I argue that chronic pain from an injury, while not diminishing it all, is almost a gift. It goes away; and it leaves behind an important memory that allows the patient to appreciate both their previous and post-pain body. It also allows people to appreciate the experience of sick people in a way that others may not.

It smacked me hard to hear someone with an injury categorize themselves as an invisible illness or chronic illness patient. I’m not sure why. Perhaps I’m still buried in my own grief; perhaps it’s still my own jagged little pill; and I am protective of it. But really, I’m not sure why anyone would want it, frankly.

Regardless, for someone to grab onto it, for the sake of sympathy, attention, or anything akin to that, seemed so silly. This, in turn, got me thinking about how you can tell if you really do have an invisible illness, or if you are full of attention-seeking bullshit.

So, if you aren’t sure, answer these three questions:  

 

Do You Willingly Accept, Seek Out, or Try Any Insane Advice?

Does the next “big” cure like essential oils, vitamins, shakes, or any other random palliative sound like a panacea? Or, ask yourself, honestly, does it sound, like something you can use as a subject starter? In other words, you can legitimately bring your “ailment” up, with a friend, in a mutually beneficial conversation. Hey, you get to talk, and she (let’s be honest, it’s hardly ever men that sell MLM crap) gets to sell you shit. Guess what? You aren’t fucking sick. You are using your illness to talk bullshit, around more bullshit. Know how I know this? Because thieves oil (whatever the fuck that is) won’t change the shape of my skull, anymore than it will clean up cartilage in a bad knee. So, if you are hitting up your local Young Living (or DoTerra, or Isagenix, or fill-in-the-blank) rep, you are pandering for attention.

 

Are You Willing to Quietly Listen to ANYONE Else with “Similar” Woes?

When your Great Aunt Betty tells you that her neighbor’s sister’s mailman also used to once have a headache, are you all ears? Do you want to hear all about your baby-sitter’s menstrual headaches, anxiously awaiting your “turn,” to talk, just so someone will validate you? Guess what? You aren’t sick. Here’s the secret: the real people in your life are getting sick of hearing your bullshit stories over and over again, and the reason you are stuck in the position of listening to these windbags, waiting for your turn to talk, is because you have exhausted your loved ones with crappy, exhausting complaints.

 

Do You Sound Like a Hallmark Card?

Do you refer to your illness or ailment as a journey? Or, do you call failed doctor’s appointments, where they tell you nothing’s wrong, as “just another step in the road?” Are you writing your own “book of life?” Sweetie, this isn’t Eat, Pray, Love. If you are sick, truly sick, you’ll know it. It’s not a fucking journey. You’ll realize that once you know you are sick, it’s the end of the God Damn road. Know what that means, for real? It means that you grieve. You, no shit, grieve. A part of you dies. Remember what you know about the grieving process, with the real stages (sadness, denial, the whole she-bang?), real sick people are doing that. They aren’t on some hokey journey. They wake up angry on Monday, and hopefully accepting Tuesday. They aren’t, as a friend of mine said, fucking handsome men in Italy and eating their way through Europe, hoping to come to an epiphany about life. The "epiphany," is that their former life is over, and they have to find a new way to accept the shitty new one they've been handed. How's that for a fucking journey?

 

So, if you find yourself in one of these three questions, you are probably “fake” sick. It’s okay. Really. Being sick, from the outside, looks like a lot of fun. People pay a lot of attention to you. Well, it looks like they pay a lot of attention to you. So, that looks like a pretty sweet deal. For someone with a deeply empty life, that might seem like the best thing ever. But, let me suggest exploring why you think you want this, instead

Because, let me be the first to tell you, I wish that I could slap some DoTerra on my forehead, tell my mailman that I just have a headache, and that my journey is beautiful. Really. If being truly ill were that simple, and my life were my own again, perhaps I’d think it’d be a good gig. But being sick is about losing everything you ever knew. It’s about forgetting everything you ever dreamt. Forgetting your dreams. Forgetting hope. Finding a new soul. It’s the worst thing that can happen to a person, short of dying.