Click the picture for the story of Calypso, the Three Legged Green Sea Turtle, and why she's my symbol

Saturday, December 29, 2012

3-year Anniversary of My Accident

I haven't written anything on this blog in a while but the anniversary of my car accident is a date I couldn't ignore.

If you happen to be reading this blog for the first time, read this post first, explaining my story.
(If anyone wants to see how things have changed you can check out my First Post After The Accident, Year 1, and Year 2)

This year has been one of continuing progress. I've had 2 different leg braces, ending the year using the Allard Toe-OFF AFO, an ankle brace that makes use of carbon fiber to make it durable and light. This is my smallest and lightest brace yet, compensating for the lack of ankle movement in my left leg.

Some of my old braces took about 5 minutes or more to get on. This takes about a minute.

I've still had my share of medical issues. I've had multiple surgeries for an ongoing infection that's gotten all the way down to the metal in my back. Once metal hardware is infected (especially necessary hardware that you can't remove) it's very hard to get rid of. Precautions have been taken and every measure is being taken to try and eradicate the bug in my back.


I finished another semester, leaving me only one more until I graduate with my bachelor's degree in biology. I'm already applying to graduate schools for next fall, where I'll study bioinformatics (a combination biology and computer programming).

I've been continuing to explore my new found passion for painting. This year I painted my Christmas gifts for people, coming up with a few really great ones. Some are better than others but I had fun painting each and every one of them.


 The tabernacle of a church, painted for my mother.

 The Four Seasons, for Q. Try looking at it upside-down.

 The final painting turned out really well, though this picture didn't do it justice.
The original.

 The Nightmare Before Christmas, for Kayla.

 Batman Celtic Knot, for Philip.

The Sun Over Lake Michigan, for my aunt.

Minas Tirith from Lord of the Rings, for my dad.

My friend Cat asked for a picture of me and I painted her this. 

There are still a couple of others in the mail that I won't post. Needless to say I've been spending countless hours working on these. The best part is that from all my brainstorming sessions of what to paint for people, I have a giant stack of painting ideas and sketches that I can still use.

Lastly I want to thank everyone who's helped me along this past year. I've worked hard but no one gets anywhere without some from help of those around them (family or friends). I first want to thank my Mom and Dad, who've been there to kick my butt over the years when I'd already given up. Dad, thank you for being there for advice, counsel, and a fresh pair of eyes. Mom, you've been there since since the beginning and have carried me kicking and screaming down the road to recovery; I love you both more than words can convey. To my siblings, thanks for being there to dish out the family gossip, to commiserate, to give me a patient ear when I've needed it, and helping to keep my life in perspective. Thanks Philip, a true friend through anything. Thanks Kelley, my amazing faghag, who helped keep me sane no matter what was going on in my life. Thanks Tony, for reminding me to relax and enjoy life and not to take things so seriously. Thanks Kayla and Eli, the cutest family I know, for reminding me what's important in life. Thanks all the staff of Coastal Rehab (though especially Mindy and Lynn) for tireless working to keep me improving. Thanks to all the staff up at the Kennedy Kreiger Institute and The International Center for Spinal Cord Injury (Kristin, Meredith, Brooke, Stephanie, Marjorie, and so many more) who've been the driving force in my rehab since I was first injured. Thanks to all the doctors (there's dozens), nurses (hundreds), and other staff  who've helped me with my ever climbing number of medical visits. Thank you to the orthotists who've worked tirelessly to make sure I have a working leg brace, without which I wouldn't be walking at all. Thank you to all the people who've read my blog, followed me on facebook, tumblr, etc; though this may be just a way to pass time for you, the support I've received from all of you has kept me going for all these years.

I'm currently up in Baltimore for Boot Camp again, so expect updates to follow in the next few days.

Monday, December 10, 2012

Listen to the lyrics

"I am titanium!!!" Medical grade to be specific.

Saturday, December 1, 2012

I've been absent from my blog lately, a hiatus caused mostly by school work.
Here's what's new:

ToeOFF AFO
I've been walking more and more using the Allard ToeOFF AFO. It's been working great. I was finally able to ramp up the amount of time I spend wearing it so now I can wear it all day (with breaks to give my skin a break).

My leg brace with extra padding in the background.

I love that this brace gives me the ability to raid my closet for shoes. Now that I'm not wearing my bulkier brace I fit into some of my old shoes, some of which I haven't worn since before the accident. 

It's like my feet are going back in time to before the accident.
 
Wound VAC
For those of you who remember this little bad boy right here, I went through a stint on the Wound VAC. It sucked out all the unwanted buildup in my back in order to help fight the infection I was dealing. It's healed up (finally!) but I still have to be careful.

WoundVAC with complementary awkward man-bag.

Once it's had a few more days to heal I can...
Return to the Water!!!
 
It's difficult to convey how extremely excited and overjoyed at this I am!

I've been exiled from the water since last year, when I had to wait for my surgery scars to completely heal. Every few weeks I'd get excited that I might get to go back but to no avail. I'm not making this whole post all about that or it won't happen.

School
School is kicking my butt as we move toward another round of finals. I've got to get through the fall and the spring and I'll have my bachelors in biology. After I graduate I'm going to be looking for a career in bioinformatics. This fascinating field is all about paring microbiology and computer programming. I never expected to love computer programming but I seem to have a real knack for it. I'll soon be looking at grad schools for next fall.


Bioinformatics. Yeah, it's kind of like that.
Painting 
I've been filling my spare time with painting, an activity I picked up recently. I currently have several underway. Here are a few fun one's that I've done recently:


Who-who!

 Long shadows are long.

Not actually mine. This picture is from my Dr.'s office in Albany this summer. I will have to paint my own version of this at some point.
 
My take on the Mutts comic strip.

The turtle I painted onto the stopper of my cane.

Thursday, November 22, 2012

School sucks + some awesome paintings

I'm in the heart of my senior year but I'm nearing the end. I'm graduating next spring with a bachelors in biology. In the meantime I'm studying for finals which has put a crimp in my time to write.

In the meantime here's some paintings that I painted.



Bird of Paradise flower.


These I did at Serenity Studio Arts

I have a real post in the works here soon.
The Turtle

Sunday, October 14, 2012

How Do You Find Balance?

How do people find balance in their lives? I've always had a hard time balancing things in my life. I tend to go to extremes whenever I have a choice in front of me and it comes back to bite me EVERY TIME! You think I'd have learned by. There are the things I've always struggled with (homework vs. leisure time, clean vs. orderly, health food vs. junk food) but I've got a few that have come to the forefront lately.

1) Slides vs. Hitchhiking
A project I've been working on for my parents is to scan in their old projector slides. My dad is a photobug and has slides going back to when he was a kid (though most are from me and my siblings lifetimes). Realizing that the film was degrading my dad got an attachment for our scanner so that we could scan them into the computer. Only problem is that it only scans in four slides at a time.

It takes about 2-3 hours to scan in one carousel of slides. Most boring job I've ever had.

This extremely tedious task was offered to me, in exchange for a small amount of gas money. As I'm not otherwise employed this is one of my few opportunities for real work, so I dived right into it. For obvious reasons I'd rather drive myself, rather than say hitchhiking. I started doing 2-3 reels a day.

If I ever do end up hitchhiking I won't forget my towel.

The problem with this is the longer I did this the more I felt increased lower back pain. My back pain had more or less vanished since I gave up my wheelchair at the beginning of this year. If I push myself too hard scanning slides, I end up slightly less broke but in pain. I've been trying to moderate myself, only doing one (maybe one and a half) a day; gas is a good motivator but back pain is a good deterrent. Finding balance is the goal but it's hard not to do a ton or give up entirely. It's a process...

2) Old Brace vs. New Brace
I'm now in the middle of two different braces, both AFOs (Ankle Foot Orthosis). My old AFO looks like this:


and my new AFO looks like this:

The Allard ToeOFF is a carbon fiber brace with enough flexibility to let me bend my leg a little without falling over.

They can both be a pain in different ways. My old AFO gives me blisters on my heal and cuts into my skin near my knee. The new AFO gives me blisters where the bottom strap is. Since my leg is used to the old AFO it does far less damage, but the new AFO allows me a more natural gait and more freedom of motion. I tried wearing my new AFO full time but the skin around the straps isn't ready for full time usage. I'll try and ramp up the amount of time I spend in it but it's going to be a long time before it's ready for full time use.

3)School Mode vs. Exercise Mode vs. Internet Mode
I come from a family of procrastinators so it's hard to get the things I need to accomplished. I'm doing well in school but I still struggle with finding time for everything else in my life. I try and spend so much time each week exercising but it inevitably gets sucked into school time or internet time (i.e. this blog). I love my blog, since it's how I communicate with family and friends on how my recovery is going. But to keep writing is a lot of work, especially when I've got a million other things on my plate.

Be sure to check out The Turtle Walks facebook page.

It's not perfect but somehow I've struggled and found a tentative balance between all the activities in my life. For now, it's working. No matter how tempting I won't blow off school, my exercise time, or writing on this blog; they've all become important parts of my life. Just don't ask me for anything else; not because I wouldn't do it but I'd end up doing it when I get around to it. And I have been known for being a little flaky...

Yep, that's me alright.

Let me know how you find balance for your life.

Saturday, September 22, 2012

Insights From Inside the ER

So this past week was eventful. Last weekend another wonderful bubble from the infection in my back popped up. I got sent to the ER, in Baltimore... again. I whiled the 14 hours in the ER, what with some time on my hands, I discovered a few simple truths of Hospitals.  

Spend enough time in the ER and you too will unlock the secrets to the universe.

The Turtle's 5 Universal Truths About Hospitals 

1) 15 hours of fasting will turn a tortilla, sub-par ham, and American cheese into the most delicious meal of your life. 

The possibility of surgery was looming. I wasn't allowed any food or drink because of the vast chance that surgery would be done that afternoon. Fortunately we had eaten at a mom and pop diner where I got a big breakfast.

It's getting around 10:45 pm and I'm getting really hungry. So I call in the nurse and ask her if, since there was little to no chance of my having surgery that evening if I could eat. She disappeared, saying that she would ask. Around 11:45 pm I gave up hope and there she was with a cold ham and cheese wrap. Kings don't eat this good.

To my brain, it was kind of like this.
2) If given headphones during a scan and the music stops... STOP THE SCAN!

They took me back frequently for MRI's, CT's, X-Rays... the list goes on. During the MRI, a very loud and noisy process, they frequently give you earplugs or music to listen to through headphones. I'm not usually claustrophobic but the first time I went through one of those just about gave me a heart attack.The music allows me to calm down and go off somewhere else.

They stopped the music temporarily while they loaded contrast into my IV. But when they went to stick me back in the machine they forgot to turn the music back on. I tried yelling and getting their attention without moving too much; I was afraid to mess up the scans.

I should have stopped the scan early on to point out the music situation. But I sat back and tried to grin and bear it. My heart was racing inside my chest the entire time but I made it through. It was only after pulling me from the machine that the tech noticed "Huh! I forgot to turn the music back on..." YA THINK!!!!!

The music is usually better when it's switched on!!!

3) Lies are often more dependable than the truth.

It was a lie, of course, that it wouldn't hurt a bit. But since adults always said that when it was going to hurt, he could count on that statement as an accurate prediction of the future. Sometimes lies were more dependable than the truth.” 
–Ender's thoughts
Ender's Game by Orson Scott Card

Bandages come off, nurses or doctor comes in, checks it out, bandages back on. Repeat. Tape on and off... all night long. My favorite line "This should only hurt a little bit."

When a nurse actually said those words to me I thought of this book.

4) My poor braincells. DAMN YOU FAMILY FEUD!

The TV was on to Family Feud. If any of you know Family Feud, it's been on so long that it's had 6 hosts since 1976. There are decades worth of the most obscure topics that you've ever seen. I felt I was both learning and killing brain cells at the same time. At least it killed time.

The show where everything's made up and the points don't matter.

5) "You smell clean... like... sanitary!"

The response from my awesome friend when I got back. Though I laughed it off, this reminded me of all the chemical smells of the hospital. All the disease, all the meticulous cleanliness, all the life, and all the death... all the cleaning products. Though you can leave the hospital the smells and memories never leave you.

Hospital Rooms have that great ability to make you feel super clean and super creeped out at the same time.


Friday, September 14, 2012

Why I Need A New Brace and What Happened in Colorado

When I walk I use an AFO, or Ankle Foot Orthosis. (A fancy name for an ankle brace) This little shell of plastic ends up doing more than its share of the work when I walk. I'll lean on the front to hold myself up, take full advantage of the small spring in my step that it gives me, and unintentionally bang it against nearly every object.

So True! Meanies!

While my old AFO has been good to me, it's time to move on to a new brace. I always feel better if I have a goal, something to work towards. And for the last year or so that goal has been learning to master my current AFO. Now that I've pretty much got that down, I'm finding myself getting comfortable again... and therein lies the trap! Once I'm comfortable I don't work as hard and I stop making progress, at least until I pick myself up and start again. This happened with my wheelchair, my KAFO, and now this. It's time to push on before I start sliding backwards.

My new brace, the ToeOFF. It's lightweight, it's cool looking, and it's something new to work on. What's not to love?

The new brace is called the Toeoff. It's got a sleek design, with only one very strong carbon fiber cable on the side. It gives me support but far less than I'm used to. The one feature that's vastly improved over my previous brace is that it has increased spring in the ankle, which propels your body forward. It's still hard to use and it will take a lot of practice but I'm confident that just like all the others I'm going to master this too. And I can guarantee that once I do my question will be, “What's next?”

Sunday, August 12, 2012

Phantom Equipment Syndrome

For update on my health, skip to the bottom of the page.

In a past post, I talked about what's been nicknamed Phantom Wheel Syndrome. I was in a wheelchair for 2 years after my accident. I started decreasing the amount I used it but I didn't give it up entirely until this January. I had to transition from the wheelchair to canes, and I found myself constantly reaching for my wheels out of instinct... only to find them not there anymore.

Your brain makes a mental picture of your body, sometimes including certain pieces of equipment, like my wheelchair... until the wheelchair wasn't there anymore! My brain still had a mental wheelchair which it instinctively relied on. Think on that!

I'm now having Phantom Equipment Syndrome. I was equipped with a V.A.C. Pump that I had to carry around in a bag, which was about the size of an Ipad. I'd remove the strap if I was sitting or if I was in a car to relax my much abused back muscles. My first move whenever I sat up was to put the strap back over my shoulder and go. Thankfully, the wound on my back has healed enough so that the pump is no longer necessary. Yesterday when I got off the couch to go outside the first thing I did was reach for my bag... only to find it not there anymore.

The V.A.C. pump that's been traveling with me since May. Until one day... it wasn't. My brain still had a mental V.A.C. pump. Think on THAT!

While not a limb, my equipment is a constant part of my life in one form or anther. It's part of who I am and for few months that bag around my shoulder was part of me. I won't miss it (I named him Cato from The Hunger Games, take what you want from that) but I will remember it. I can't say too much against it, because there's always a possibility that I could end up using it in the future. Hopefully not any time soon but I thought I'd escaped the vacuum pump before. Only time will tell.

Update:
My previous post on the possibility of surgery turned out to be unnecessary. The only option at the time was to put a drain into the large fluid engorged tissue above my spinal hardware; we didn't end up doing this. They attempted to use an ultrasound machine on the mound on my back to see if they could find any fluid collections they could drain. They found one, but with barely any pressure the collection fled into the tissue. Unless a major fluid mass forms instead of the current fluid filled tissues, the doctors won't touch it.


There's a great chance that all the fluid will be absorbed by the body eventually. Until then I will have a weird looking hump on my back. To accent this particular feature, below it is where the Wound V.A.C. sucked out all the excess fluid; that skin is now sunken in, leaving my whole back marked with interesting geography.

"You know I'm a rather brilliant surgeon... perhaps I can help you with that hump." "What hump?"

I'm otherwise healing up nicely, though I won't be declaring “Mission Accomplished” again any time soon. I hope I heal up enough to go in a a pool or swim in the bathtub warm waters of the inlet sound that surrounds our house out here in the middle of nowhere. Who knows, these hopes and wishes might even come true.

Tuesday, August 7, 2012

On The Precipice

I'm on the edge of another choice, one that is not up to me. After a week of doctor's appointments I'm left with the prospect of a few-minute procedure or hours of surgery. All this is in respect to the bubble that's been steadily forming on my back over the past few weeks. I've been patiently awaiting the verdict on whether I'll have another major surgery.

To be fair, I have total faith in my surgeons. I just hope this isn't what they ask once I'm under.

The doctor I saw today was from plastics (plastic surgery). He recommended a drain, guided in to the correct spot with the help of an ultrasound machine. This would be a quick procedure and allow me to leave the very same day. On the other hand if the pockets of fluid that have been collecting in my back are dangerously close to anything vital, they will have to cut me open and clean out the area by hand. This would be far more invasive and keep me in pain for a much longer period.The decision over which route to choose is up to my neurosurgeon, who I see tomorrow.

This is me when it comes to knowing which is REALLY the better option: quick and easy or slower, more invasive, yet more thorough. This is why spinal surgeons get paid the big bucks.

I thought having concrete answers over what my options were give me some piece of mind or clarity. I admit I'm freaking out less than I was and I'm slightly less frustrated. But that doesn't mean I like it. I feel like in a constant game of Marco-Polo with my doctors, always in search of the final solution. They shout their hints to give me a general direction but they don't tell me exactly where I'm going. It's frustrating, like I'm flying blind.

Never play this game with family. They cheat!

But brooding over it won't change my fate. While it's true that I have the final say on any procedures done but I trust his decisions, since he's the one who rebuilt my spine from the ground up (not an exaggeration). So I value his word, his insight, and his wisdom. But that doesn't mean I wouldn't value an answer a little sooner! And if he chooses to abstain and not really give an opinion either way, I'll be getting the drain in tomorrow! Wish me luck.

Saturday, August 4, 2012

A Retraction (Sort Of)

Here at The Turtle Walks I strive to set the bar high and keep the record as accurate as it can be, considering I write whenever I feel like and pretty much say whatever I please. So I want to hereby issue my first retraction. Okay, not really a retraction so much as an update. In my last entry I talked about the bubbles on my back as well as the tunnels of fluid working their way through my back tissue. Thanks to the vacuum pump (Wound VAC) that I've had attached to me, the pockets of fluid had pretty much vanished and the wound had healed all but for a few cm's near the base of my spine.
There, I fixed it!
The problem? A new bubble has started rising out of the top of my back. Again! What does this mean? For one thing it means that I spoke too soon and I'm not miraculously healed. The underlying infection in my back is still active and giving me hell.

These bubbles are never as cute as those blown by this beluga. 

I've just finished with the summer class I've been taking in New York and will be visiting with my doctors, surgeons, etc. in Baltimore at the beginning of this next week. The bubble takes a while to build up so it's not an immediate threat. This does mean that there is the chance of surgeries, major or minor, in my future.

 He ain't kidding.

While I'm not going to let this stop me I am a little sad. Not because I'm worried about surgery (14 and counting) or that it'll interfere with my life (just let something try). No, I'm sad because this means I won't be able to get in the water. While any wound on my back is open (as has been the case since March) I'm not allowed to swim lest I get further infections. Not counting the 2 weeks I was allowed to swim in late February into March, I haven't been allowed to swim since my back surgery last December.


Think about this: My symbol is a sea turtle. What do sea turtles do mere minutes after they hatch and for almost their entire lives. SWIM!!! I know eventually I'll be allowed to return to the water, but until then I'll just have to visit the water while I sleep. Sweet dreams...