Ringing in the New Year

I rang in the new year with Jake by my side on the bed in myfather's house in Switzerland. My sister, her family and my fathers were all celebrating in the other room having champagne. They asked me to join them three hours earlier but I declined. I always ring in the new year the same way, in bed. I may be wake on my laptop but I am always in bed. Why? The same reason my sister won't work on Groundhog's day. Superstitions. Mine is about starting off the new year as I always do not to jinx myself. My sister's is because she doesn't want to end up like Bill Murray in the move Groundhog's day and have to go to work over, and over, and over again. However, this marked only the second time I've celebrated the beginning of a new year in Europe. The last time I did that was 2012, and that was an interesting year. Of course, I did graduate from veterinary school in 2012 so maybe I have something going for me. 

Jake and I boarded a plane in Omaha, Nebraska on December 22, 2014 and landed in Switzerland on the 23rd. This was the first time I've traveled with Jake, and the second time I traveled on TPN. The first time was for the Primary Immune Deficiency Advocacy Day in May, and that was in D.C. ThriveRx, my infusion company, will ship my supplies anywhere in the U.S when I travel. So that wasn't an issue. However, international travel was a different story. I was set up with Clinimix E, a shelf stable TPN, the additives I needed and for it. Getting me, and my supplies proved more challenging than I thought. However I will save that story for another day. 

Jake traveled well on the plane. His first flight was from Omaha to Chicago, and that one was interesting. He wasn't sure what was going on. However on the long flight he acted like an old hat. He got a good potty break in Chicago before we boarded for Zurich, and he didn't go again until we got to my Dad's house. On the way back we had to make a sprint through customs and to the service dog relief area (thankfully it was indoors right next to the gate I needed). We came very close to missing our flight. Thankfully my sister and her family got to the plane and told them I was coming just before I got there. The person at the desk said "there she is!" when I showed up. 

United gave us 1h20m to get through customs and onto the plane. Not. Enough. Time. I spent a good portion of the flight from Zurich to Dulles puking. And since I didn't get a chance to settle down and relax, take zofran, and settle my stomach before getting on the next plane I managed to pull a first for me. I puked on a plane, in my seat, and didn't have an air sickness bag. Twice, actually. The second time I kept most of it in, but a good portion came out my nose. EMBARRASSING. I couldn't get off that plane fast enough. 

We also pulled a first when we got to Omaha. I called, booked a hotel room, got on a shuttle and stayed in a hotel with Jake. I was praying for no access issues at that time and thankfully didn't have any. We stayed in a hotel for service dog camp, but they knew what was up. This place didn't bat an eye. I was very happy. 

Life Lesson From Bunnies

When I was six, I was living with my Dad and Larry in a house behind my elementary school. I only have a few memories of living there. A couple of them have to do with animals, and we had a lot of them. We had a pond with fish in them in the backyard, a few frogs in the pond, a Siamese cat, and rabbits. The male rabbit was mine, but I can't for the life of me remember his name. One day the doe gave birth to a littler of bunnies. She wouldn't take care of them so we tried bottle feeding them. Back then I didn't know enough to realize that hand rearing baby bunnies is extremely difficult, and despite me tending to them they started dying. Other than AJ, a Yorkie we had when I was 3 that got hit by a car on my Sister's 5th birthday (I don't remember AJ at all), these were the first animals I was close to that died. We had them in an aquarium, and I guess we had a heat source too, but they did poorly. I remember holding one that had just died, and realizing what had happened. While one would think that those bunnies were the reason I decided to be a vet, they aren't. They helped me learn how fragile life really is. 

Adapting to Life

Recently my dystonia has been very active, leaving me searching for ways to deal with its interference in my life. I am under the care of a team of medical professionals, yet sometimes I am left to fend for myself. That is okay, in part due to my medical training, but sometimes it gets tiring. However, looking at it from a learning point of view helps.

My medical team's idea of treating it, is medication. Gabapentin, Acetazolamide, and Baclofen taken three times a day. Benadryl is taken in the evening as well to try and ward off the evening attacks of paroxysmal dystonia. This leaves me extremely tired, and wanting to sleep the day away. Unlike taking Topamax and Tegretol daily I can at least think clearly. I just think slower.

Having functional hands is essential in my line of work (veterinary medicine). I perform surgery, draw blood, give injections, palpate things and more. The use of my hands is of great importance to me. Reducing damage to my foot is also important. I got permission to brace a few key joints to see if it helps.Yet it makes me sad to do so.

I've had to adapt to a new way of life more times than I care to count. But I end up adapting just fine. So the sadness will pass and it will be my normal.

Just how many new sets of normal do have to have in life?

Comfort

I arrived in my office one morning earlier this week, took off my stocking hat, and felt the hair I had so desperately tried to tame standing straight up again. I once again, went and tried to tame it down to no avail. I made a comment about it to my office mate, who said it looked okay. Of course, then he said "We are alike in the fact that we are comfortable enough to be ourselves." Or something along those lines. To an extent he was correct, I don't dress up in slacks and blouses for work. There isn't really a dress code, so I wear nice looking jeans and a shirt. Sometimes my shirt is a t-shirt, and I wear a nice looking jacket on top of it to look more presentable instead of a hoodie like I would like too. Other times I wear a Columbia button down shirt or a polo. Depends on how spiffy I want to be that day. But lets face it, how spiffy can one be wearing a backpack around all day? 

However, to a great extent, I'm not comfortable with myself. Like many other patients with chronic illness, I try to hide its effect on me. More so now then I have before, despite having Jake with me all the time as a visual indication something is "wrong" with me. I don't like being hooked up to tube feeds while trying to be professional. I don't like the edge of my central line dressing peaking out from my collar, and I really don't like having neurological symptoms out in public. It would be easy to be a hermit and not go anywhere, but I want to be productive. Even if it means on bad days just meeting a friend at a coffee shop. Especially now that Jake is writing a book about them (I'm his ghost writer). 

I'm also not comfortable about the fear I have regarding my medical issues. You can't be comfortable with yourself, if you aren't comfortable with your emotions. I can talk about logistics of getting ready to travel to Switzerland for Christmas, what meds we are changing and other ideas. But I've never opened up to anyone about my fears. The future is so uncertain, that I live mostly day by day. Predicting what I will be able to do next week, next month, next year is hard. It makes me fear for my job, whether the plan I have for practicing veterinary medicine is wise, and exactly how hard to push myself in both.

So while I am comfortable enough to hold a review session wearing jeans, a hoodie and a baseball cap I'm not comfortable in my own skin.

On Reading, Writing and Facebook..and Grading.

I squeezed in to a claustrophobic type space to sit down with my trusty companion (by that I mean my laptop..but Jake was there too) and sipped on a soy chai latte at Starbucks this morning to grade assignments so my students can go to Thanksgiving celebrations knowing they are in fact doing just fine in my course. I have the attention span of a flea while grading, so while slow, it is best for me to go from one thing to another (like Blackboard to Facebook). I concentrate on what I am reading better this way, or at least that is what I tell myself. In reality, paragraphs are very hard for me to read. The words blur a bit, and overlap and it takes a lot of focus for me to read an essay that should have been a short answer. On good days I can read forever, but on bad days I find myself on Facebook where things are written in short fragments most of the time. Easy to read. Then I can focus on the task at hand again. 

Maybe I should tell my students to answer questions like they were doing it on Facebook? 

Probably would be asking 4 trbl....

Anyway....

I was diagnosed with a learning disability when I was in elementary school. I spent time in what I called Special Ed (what most people these days call "Resource") learning how to read and write. Something I couldn't do hardly at all until 3rd grade. Remember those days when you were called upon to read out loud to the class? Not only was I horribly shy, but I couldn't read it anyway. I used to draw pictures for the story I was "writing" but when I stood up to read my story I just made one up. I couldn't write it out properly. My teacher never said a thing. One of my best days in life was the first day I managed to get a 100% on my spelling test in Mr. E's room. Mr. E was my Special Ed/Resource teacher. He's the reason I love to read, and write. And I can do it well.  Despite the fact reading an actual book is hard, I love listing to audiobooks. 

So to sum up this fragmented post, I'm on Facebook a lot. Part of it is because it is my social outlet and part of it is resting my eyes/brain for what I am working on. At least I am productive that way. 

Igor--My Dystonia Monster Part I.

Do you know that moment when you start to drift off to sleep where you are aware of things around you but the sound changes? That minute you start to relax and the world starts to disappear, but you are vaguely aware of things? It always reminded me of the end of a long road trip, when the driver slows down and exit the interstate and that vibration you felt for hours changes suddenly.  When I was younger I learned to love that feeling (both of them, really). But, these days that moment is one of the most anxiety provoking parts of my day. 

Think about a time when you just passed that stage and woke up with a sudden start because you felt like you were falling off a swing (or cliff, whatever floats your boat). I don't wake up with a start, I wake up with muscle spasms and no control over the right side of my body. Sometimes I wake up doing mini sit ups from the muscles in my abdomen contracting on their own. That is how it all started, actually. Now I also awake to my back and neck flexing and I end up choking on my own spit, or having my hand/foot in unnatural positions from spasms. Falling out of bed when it happens is a common occurrence. Getting up off the floor is next to impossible until the episode stops. 

Sometimes it strikes when I'm wide awake working in my office, or lounging around the house. When it happens during times I am awake I get a wave of uneasiness before it hits, but that warning sign can occur just moments before an episode starts. 

What causes it? Well, it was first diagnosed as paroxysmal nocturnal dystonia (a rare movement disorder and/or type of epileptic seizure in the frontal lobe (or basal ganglia) depending on who you talk top) . Then after it started happening during the day paroxysmal dystonia/dyskinesia. The attacks of it I have are long (20-30 minutes in length) and minor symptoms can last a day or two. 

On days like today, where my dystonia has caught me off guard twice during wake time hours, going to sleep is the last thing I want to do. Falling asleep is sure to bring on another episode. Not sleeping enough will cause my dystonia (affectionately name Igor) to act up. So it is a Catch 22. Damned if I do, damned if I don't. 

So what do I do? 

I beg Igor to strike early and quickly when I decide to fall asleep. I listen to a book or TV show as I fall asleep so when he does act up I have something to focus on. I try to relax. And now, I look to Jake for comfort and help. 

Same Road, Different Mile Marker

Years ago I started a blog called "All Roads Lead to Oneself." That morphed into "The Road I'm On" when I was in veterinary school because I wanted a fresh outlook. I ended up deleting the blog because, well, I was trying start over so to speak. Recently I realized I don't need to start over. I'm on the same road I was years ago, just at different mile marker. And thus like a flamingo rising from the ashes...Or is it a Phoenix....Well, in all honestly a flamingo is named after the phoenix so it doesn't matter. Now where was I. Oh, I was just saying that I thought I'd resurrect my blog.

The quick update on my life--I'm back in Nebraska. I'm a veterinarian, and I have the cutest nephews in the world. I also have a service dog now, named Jake.