Tuesday, May 6, 2014

I'm Back!

Hello everyone!  I cannot believe it's been so long since I've posted.  For anyone that cares, I apologize.  Let's just say life has changed quite a bit since since I last wrote. 

I've had a crazy day, which I will post about later, but in the meantime here are two new videos from last night.  Painting is something that I've wanted to try for the longest time and yesterday and I finally did!  Probably only did it for an hour or so but I really enjoyed myself and cannot wait to get back at it!

Anyway, that's all for now.  Talk soon!



Monday, September 2, 2013

Four Years

August 18 marked four years that I have now been paralyzed.  I've been wanting to write a blog but to be honest, I really don't know what to write.  What am I supposed to say?  Some people celebrate this day like it's their second birthday.  The day they got their second chance.  The day they did not die.  How uplifting.  Call me pessimistic and no offense to those who might feel that way, but I think it's pretty stupid.  What about the other 364 days I didn't die. 

Yay!  Let's go back to August 18, 2009.  I can't walk.  I cannot breathe on my own.  I don't know if I'm going to live or die.  I'm so drugged up I really don't understand the severity of what's taking place.  Whenever I do come around I have family and friends looking down at me.  Why am I in the hospital?  I was just in the ocean.  I remember hurting myself and not being able to move but that's OK, it's probably just a stinger or something and I will be OK in a little bit.  They probably just took me to the hospital to make sure everything is cool..  I will be moving in a little while.  I just need a rest.  But if that's the case, why are these tubes down my throat?  Why can't I talk?  Why can't I feel anything below my chest?  Why does my neck hurt?  I don't understand the need for the IV because again, I really shouldn't be here too much longer.  But wait.  Why is my cousin, who lives in California, here?  That's really nice of him but I don't get it.  Too many questions going back and forth in my mind.  Feeling pretty tired.  It's a nap time.  Things will probably be better when I wake up.  Bring on more drugs!

If I only knew then what I know now!  This marks the worst day of my life.  The day that probably I, in all likelihood, walked for the last time.  The last time I did a lot of things for the last time.  Of course some positive things came out of it which I'm thankful for, but come on.  If you're reading this and feel like I'm unappreciative or being negative, put yourself in my position.  Think about everything that you love to do.  Think about everything that you hate to do for that matter.  I miss those things.  There's no doubt that there are people in much worse situations than myself, and my heart goes out to them, but this is my blog so I'm speaking on my experiences.

I would do absolutely anything to not be disabled any longer.  Anything.  This does not mean I do not want Melissa and Brock in my life.  That's one thing that I would keep the same.  Other than that, I'd give my right arm.  Literally.  It's not like I use it now anyway!

For those of you who might not fully understand what this life entails and what it's been like, let me share some things.

  • I have not walked in over 4 years, 48 months, 208 weeks, 1,460 days, 35,040 hours, 2,102,400 minutes or 126,144,000 seconds.  Not that I'm counting.
  • I receive my first helicopter ride.  Unfortunately it was because I was airlifted.  Not really that much fun.  $13,500.  Thank god for insurance.
  • I've almost died twice, not including the original injury.
  • If you add the time I've spent in a rehabilitation facility and the many hospitals, it's been months and months and months.  I cannot even put a number on it.
  • I had the original surgery to place the hardware in my neck, baclofen pump was installed, I had a cyst in the back of my neck that needed removed, a trach put in place and eventually removed, bladder stones that needed broken up, not to mention a ridiculous amount of bronchoscopies to go into my lungs and remove mucus due to pneumonia.  Oh yeah, I've had that so many times I've lost track.
  • Let's talk about one of the worst things.  Since my accident I've not been able to go to the bathroom by myself.  I'm supposed to drink lots of fluid and be cathed every 4 hours, which I don't always adhere to, but it's still a lot.  Men, think about having a straw shoved into your penis six or seven times a day.  Take that times a few years and I don't even want to think about the total number of times.  Let's just say, it's inconvenient and it sucks!  That's a pretty big understatement.
  • I wake up around 7:30 AM every day.  Weekends included.  There have only been a handful of days in over four years that I've stayed in bed all day, excluding the hospital visits.  Also the nurse turns me on my side around 4:30 AM every morning and sometimes I have trouble going back to sleep, so I will literally lay there wide awake until around 7:15 AM.  Really.  I just lie there.  I do not want to wake up Melissa just because I cannot go to sleep.  I cannot get up to go watch TV in the living room, jump on my computer so hopefully I get tired and can salvage a few more hours of sleep, grab something to eat or drink.  It's just me and my thoughts for 3 hours.  Sometimes it's nice but most of the time it's torture.
  •  I generally weighed anywhere between 180 and 190 lbs before my accident.  At one point I fell to 134 lbs.  It was disgusting.  At first I could not physically eat so I had a feeding tube, and then I had no appetite and once I finally started eating it took me a while to put some weight on.
  • I have had hundreds and hundreds of nurses and doctors.  Really only a select few seem to really care about my situation, be my advocate and fight for me.  The rest always seemed too busy or disinterested.  I got to experience firsthand the incredibly dysfunctional Health Care System we have in this country.  Also, I wish I would have a dollar for every one that has seen me naked since the accident.  I would be rich!  Honestly, I really don't even care anymore who sees me.  I've been desensitized when it comes to that and that's a little scary.  You might like your privacy but you can kiss that goodbye relatively quickly in situations like these!
  • The same issues can be said for the CNAs, LPNs and RNs that have come through my doors.  I've personally known many competent people in my life that hold one of these titles so this does not pertain to them.  It's really a shame the quality of people that Home Health agencies are hiring.  I've been lucky enough to find a few extremely amazing people but besides that, most people they send my way are train wrecks.  It seems like the more important letters that fall behind their name, the worse they are!  Again, this is not true for everyone.  Just most of the people I've dealt with.
  • Although I've not been the most dedicated to my physical and occupational therapy at times, I do absolutely love it and I feel like I've turned over a new leaf.  I'm able to flex and contract muscles in my arms that I've never been able to.  My last trip to Kennedy Krieger in June, they were able to detect my triceps firing.  This is huge!  Especially due to my level of injury.  Everything has only getting stronger since that time.  I attribute this to religiously riding my RT300 bike every day I possibly can.  That bike cost over $20,000 and was not covered by my insurance at the time.  That's why my fundraisers are so important and I'm so grateful for everything that you've done for myself and my family!  It's truly a blessing.  Since I've had my bike, I've logged almost 800 hours of use.  Whenever I do my legs I average 7.44 miles for one hour.  So far I've gone 3,843 miles!  When doing my arms I average 6.96 miles for an hour and so far I've gone 1,374 miles.  Collectively that's 5,217 miles.  I'm pretty proud of that although really it should be higher.  There just aren't enough hours in the day.
I've done quite a bit of complaining and the sad part is, I didn't really cover everything.  I figured I would end on a positive note with my last bullet point!  :-) I didn't write this for your sympathy.  I hate it when people say they feel bad for me or if I get anything in life that I normally wouldn't just because of my disability.  That's the biggest insult you could possibly give.  I guess I just wanted to open your eyes to some of the things us quadriplegics and all those with disabilities alike have to deal with on a daily basis.  Not only that, it also comes back to the anniversary of the accident.  You have to be out of your mind to celebrate something like this.  I know, to each their own.  I guess I just don't get it.  For anyone who may have found this harsh, that's fine, but if you're not paralyzed then you'll never know what is truly like.  I feel like it's my job to make people more aware of what myself and my fellow spinal cord injury peeps have to get through every day, week, month and year.  Who knows, it could also be a lifetime.  Or, maybe one day there will be a cure.  That will be the day I celebrate!  You can count on that!

Thanks for reading!

Sunday, August 18, 2013

Basket Bingo

Thank you so much to everyone for making today a success!  In particular, Tasha for organizing and getting Aaron's Journey involved, my mother and Aunt Den for selling raffle tickets, Angie and my wife Melissa helping with cleanup and last but not least, all of you who came to support the cause!  I appreciate it so very much!  Like I said before, you/this type of event is why I'm able to do what I do.  Thanks again and I hope everyone enjoyed themselves!

Hope you all have a great start of the week tomorrow!  Keep checking back!

Friday, August 16, 2013

I promised a blog...

Unfortunately it's going to be a really short one.  Actually, not unfortunately because it's all for good reasons!  Tonight we're having dinner at the house with my mom.  Melissa is cooking steaks on the grill!  Tomorrow we're going to a Phillies game.  They are playing the Dodgers, who have turned things around since the All-Star break and are doing amazing, so hopefully it's a good game but you never know with the Phillies.  Sunday there is a basket bingo fundraiser going on and I did not know when I will be home.  Hopefully I can write something Sunday late afternoon or evening.  After all, that is my special day, if you want to call it that.  Like Melissa, I don't know what to call it!

Thanks for following and talk to you soon!

Thursday, August 15, 2013

Some Truths

I really enjoy writing and I love being honest, sometimes to a fault, but I have to admit - I have not utilized my blogs like I really intended. I always think I'm going to offend someone.  Maybe I will say something someone doesn't appreciate.  I'm sorry but that has to change.  I have to be honest with myself and anyone who might enjoy reading what I have to say.  Otherwise it's just a sham.  Let's try it out...

August 18 will mark four years since my accident.  This time of year is the hardest for me.  Everyone has to know that.  As much as I try to not allow my disability have any more control over my life than it already does, it happens.  It's really hard to keep from happening.  Indescribably hard.

Obviously it has physically crippled me.  What some people don't understand is, it can do the same to me mentally.  In a bad way.  I hate it.  At the very least the one thing I should have going is a strong mind.  Right?  Most of the time I have that.  Then there are those days.  Sometimes those days turn into a week.  Since I don't have a better explanation, the only way I can convey how it feels is mental torture.   I'm trapped inside this body that refuses to move.  I'm just a puppet more or less.  My arms and legs might as well be on strings.  I'm fed, dressed, sat up in bed and put into my chair to go through my mundane routine.  I know life is better than that but that's what those days can feel like.

I try so hard to wear that smile everyone would like to see.  I feel fake sometimes.  If everyone could live this life to feel what it's like then maybe they would understand, but at the same time thank god they do not have to.  As far as spinal cord injuries go, mine is pretty serious and at a high level but heaven knows it could be so much worse.  I've been worse.  I've heard about worse situations.  I've seen those worse off.  I know as far as this life goes, I'm pretty lucky.  For as much as I've lost because of my disability, I've gained just as much.

I'm obsessed with music and this song just happens to describe what I'm feeling perfectly.  Maybe this will do some of the talking for me.

There's a lot I want to say, especially because of my gimpiversary looming in the next few days, and I will.  For now, that'll do.  There will be another blog tomorrow.  After all...

This is just the start.

Sunday, July 21, 2013

Wish I Would Have Looked at This the Morning of August 18, 2009!

Maybe just a little something for everyone to think about...

Don’t jump into the unknown. Consider the dangers before you take the plunge:
  • Check for hazards in the water. Rocks or other objects may be submerged and difficult to see.
  • Check the depth of the water. Remember tides can rise and fall very quickly. The difference in water depth between the peaks and troughs of waves can be many metres.
  • As a rule of thumb, a jump of ten metres requires a depth of at least five metres.
  • Never jump whilst under the influence of alcohol or drugs.
  • Check for access. It may be impossible or very difficult to get out of the water.
  • Consider the risks to yourself and others. Conditions can change rapidly. Even if you are jumping safely, children may be watching and copy your actions.  
Think before you jump. Don't let alcohol, drugs or peer pressure affect your judgement. If you jump when you feel unsafe or pressured, you probably won’t enjoy the experience.
Be safe out there!