Writer’s Block

It’s a beautiful Sunday with the sun shining, happy cats dozing or playing wherever they’d like to play. Nikki is happily watching one of her favorite shows (at least until she realized it was the last episode available) and I woke up to the pleasant discovery that I have somehow managed to get pink eye.

My luck, as I’ve mentioned, is kind of amazing in it’s scope of inconvenience.

I thought I’d wake up today feeling slightly more inspired after a good night’s sleep and have something to write here, but being home just made me comfortable and dumb.

Its these moments that I feel a healthy respect for other writers, especially bloggers, who manage to churn out great and engaging content every single day. But that’s likely the Imposter Syndrome talking. Nobody can be perfect all the time. No writer can sit down every single day and feel 100% good about what they’ve written. They can choose to sit down and write every single day no matter how they feel, though. That’s what makes you a writer.

I gave myself the day off yesterday to process some of the things I needed to think about coming home from Cleveland Clinic. Decisions that needed to be made in regards to what I’m aiming for and what I’ll be discussing with my wonderful primary doctor in our appointment tomorrow. Part of that was accepting the inevitability of my conditions. Not death, but that no matter how long I live, these conditions will live with me. It isn’t dying that scares me. It’s what my life will be while I live it.

I’ll ask for your patience over these coming days as you check in to the blog and find updates. I can’t promise that they’ll be much good, but I can promise that they will be here. I will still promise honesty and openness. The opportunity to turn inward and truly examine my emotions may be something that presents itself here and maybe, if I’m lucky, one of you will speak up and share with me some wisdom that will change me as a person and as a writer.

The most important part of this entire journey is being on it, right?


Cleveland Clinic: Appointments and Shenanigans

I’ve been hard on Ohio. It isn’t that bad, really. The roads are better than Michigan, but that’s not really a claim to fame. Forest trails are in better shape than Michigan roads. We arrived on the Clinic Main Campus about an hour before my appointment, but confusion over how the hell to park put me right on time. The main building stole my breath away. It was huge, beautiful, and all at once, I was so overwhelmed by not just the building itself, but the realization that, with time, this wouldn’t stun me anymore. It will eventually become a home away from home.

The main hospital building!

I got into my appointment and met my new doctor. We clicked pretty much immediately as he asked tons of questions, answered tons of mine, and performed dozens of physical tests to determine how my neuropathy is progressing. The short answer, it’s doing what he expected it to be doing. My reflexes are both over and under compensating, my heart rate is rocking out its POTSie self, and my blood pressure managed to confound both the assisting nurse and Dr. Shields as it remained the exact same no matter what we did while my heart rate went crazy.

Then came the time to schedule all of my tests. We were braced for the onslaught of testing needed to find more information about my conditions and had booked our hotel through Saturday to make sure we could do everything needed, but scheduling had other plans. Only basic lab work was available to me. We already have another trip booked for May, where I will spend roughly 10 hours straight in medical testing, starting at 7:30am.

It’ll be a long day.

I was a little disheartened by this, but Nikki had the remedy. We found one of the many restaurants hidden in the main building and she showed me all the cool things she found while I was busy being  quizzed by Dr. Shields.

I wanted to touch it!
A wall of silver.
This was Nikki’s favorite.

After eating and exploring a little, we headed to where I would get lab work. It was then where I was asked to sit perfectly still for 30 minutes in an uncomfortable chair, knowing that at the end of the 30 minutes, I would be faced with needles.

So. Much. Fun.

After an agonizing 30 minutes of not even being able to swing my legs or fidget, the wonderful lab tech came in and confirmed who I was and walked me through what we’d be doing. As she spoke, however, I found myself becoming more and more concerned about what she was doing, not what she was saying. I knew a blood draw was part of the lab work, but I watched with horrified humor as she seemed to pull vial after vial out.

I don’t need any of my blood, right?

It took one poke to each arm, but we managed to fill every one of those suckers. After the adventure of having all of my blood stolen by Barb the Impaler, we went back to the hotel where I promptly devoured almost all of our snacks and fell asleep.

Day two, now unencumbered by testing, started with food at the hotel bar, then we set off to Nikki’s touristy place of choice: The Rock and Roll Hall of Fame!

In hindsight, I should have sat in the letters. 

They don’t really like you taking pictures in the Hall of Fame, but there was one exhibit we couldn’t resist. In pure good luck, we managed to visit at the time one of my all time favorite albums was being featured as their limited time exhibit.

All we are is just another brick in the wall.
You’ll never get your pudding if you don’t eat your meat!

To put it bluntly, it was cool as hell. Real props from Pink Floyd’s The Wall, along with Roger Waters’ explanation of what inspired the wall written on intermittent bricks. It was larger than life and I was giddy over it all.

Finally, fatigue got the best of me and we hoofed it back to the hotel for another calm night in. We depart for home tomorrow morning, with the possibility of more adventures.


Mysterious Injuries

Life with EDS means getting used to waking up and doing something resembling a status report of my body before I move. In fact, I’m fairly sure if you were to watch me sleep (please don’t, that’s creepy, and Nikki and Pam already have enough pictures of me sleeping, but that’s for another post), you wouldn’t be able to tell the moment I actually wake up because, for at least five or ten minutes, I am laying exactly in the position I woke up in. In those few minutes, I am slowly taking in awareness of my body to see what has changed overnight.

This morning, my hip and knee were out of place and throbbing. These give me a lot of trouble, since I am a side sleeper and get tired of using body pillows, Kit, or my wife to support myself better. My shoulders are sore from the way I tuck them up, but don’t feel dislocated. My fingers, wrists, ankles, and toes are stiff, which will ease up as I move them. This is also when I can start figuring out what kind of pain I’ll be managing that day.

Kit, the Dopey Valentine’s Fox

Having completed the morning status report, it’s then time to test how my dysautonomic conditions are going to behave for the day. I’ll start moving my feet and legs, trying to coax blood flow to pick up so that, when I sit up, I won’t get as dizzy. Then sitting up and standing, which even going slowly tends to come with a wave of dizziness and lightheadedness. Head into the bathroom and check for new bruises. EDS means I bruise if someone so much as looks at me, so I’m very used to looking like I fell down the stairs.

It was in this step of the process this morning that I noticed I had a black eye and a busted open lip.

I tried to get a picture, but no lighting in the apartment shows either injury well enough to accomplish anything but making me look like I’m trying to be a pirate, but you’ll just have to trust me on this one. I brought this up to Nikki, to make sure that I wasn’t delusional and she immediately poked at it and asked if it hurt, to which I said yes, so stop touching it. Her theory was that her puppy, Zeep did it.

He even looks guilty.


A Witty First Post

In a perfect world, this first post would be perfection in black and white. A funny, yet tasteful joke here, a classy play on words there, some soul deep wisdom sprinkled about as needed. Bake at 350 for twenty minutes and behold the greatest first blog post to ever grace the eternal halls of internet fame.

In reality, it’s 7 in the morning and I’ve been up all night, alternating between playing video games and losing horribly, repeatedly waking one of the cats up because she just hates it when I do that, and wondering what in the hell I’m doing with my life. It was at about 5 in the morning that the incessant demand that I just fucking write that has come from so many different people finally broke through the tired, irritable haze of my brain. Suddenly, before even the sun was ready to be up and at it, I was feeling motivated. Which is, frankly, annoying as all hell. It’s 7am. I don’t have anywhere to be, anything to do, until 10am and all that involves is what is likely to be a very frustrating live chat with someone a state away from me about why things aren’t going the way I want them to when it comes to sensitive medical information being sent to the right places.

The text I sent my mother at 5:22am, just before beginning this adventure, read “Awake. Intensely frustrated. I’m really hitting a point where I don’t want to keep living like this.” She’s frightfully used to these sorts of texts from me and responded a bit later in her calm, professionally trained counselor way. “I understand…use the time to relax and meditate. See if it helps.”

I shoot back “Nope. Writing won. Congratulations, you finally get your fucking blog.”

I can feel her smug victory over the phone and I really want to be mad at her. Somehow, I can’t stop smiling long enough to be mad at all.