"If you're going through Hell, keep going."
-Winston Churchill

Jul 27, 2011

These hands are small I know

Kudos to you if you knew the title of my blog was a Jewel song ;o)

What a slacker I have been! In my defense, it has been a crazy couple of weeks. Let me begin by telling you how great the River Run was! It was a beautiful day, we had a great turnout and I was able to spend the afternoon at Sea Dawgs where we had live music, a couple of venders, and friends and family all day long. I was so fortunate to be able to meet so many people who have been supporting me throughout my journey. In addition, I am so extremely blessed and appreciative towards all the winners who donated their prize money back to me. It was more than I could have ever asked for.
At the River run

Following the River Run, I began to have issues with swelling in my legs. While swelling is common in spinal cord injury, my legs were also red and hot to the touch. Originally, my therapist thought it was a blood clot and I immediately went to the hospital to have an ultrasound done. Fortunately, there were no blood clots found. At night, I would elevate my legs so that if it were fluid causing the swelling, it would go down. However, the swelling stayed consistent and even seemed worse after a few days. My family doctor thought perhaps it was cellulitis and prescribed me an antibiotic. 10 days later and nothing had improved. During this time, I began to feel increasingly lethargic and tired. Tuesday the 12th I had an appointment at Methodist rehab with my neurologist for a basic check up. All he could say about the swelling was that it is “typical” for spinal cord injuries. I am not fully satisfied with this answer, but what can you do? He also prescribed a new muscle relaxer to take in combination with the 60mg of baclofen I take daily because my spasms have been getting worse and worse. Needless to say, combined with already feeling lethargic and tired, the new addition of medication turned me into a complete zombie. It took five days before it tapered off enough for me to feel normal again. But then, two days later, I had to double the dose, which means the last five days have been a blur and have consisted of many naps. Didn’t I tell you the last couple weeks have been sort of crazy? Well, along with the swelling and new drugs, I also had to deal with a nasty UTI that I had to cope with almost a whole week before getting on yet another antibiotic. I laid in bed for 2 days with a fever of 101.5 feeling absolutely miserable. Finally, last Tuesday, I woke up and for the first time in a week and a half, I felt good again. I had forgotten what it felt like! Of course, it was the next day I had the double my dose of the muscle relaxer, but other than that, I was back to normal. I wish I could say this is the extent of my crazy couple of weeks, but during this time I also had to deal with my dog being lost. For those who didn’t know, my ex boyfriend in New Orleans has my 1.5 year old little Rat Terrier, Ziggy, who has a large portion of my heart. She is as sweet as can be and also quite energetic. For that reason, I know it would be too hard for my mother to have to care for both me and a very hyper puppy. Plus, in New Orleans, Ziggy has a backyard she can roam around and have other dogs for her to socialize and stay entertained. It breaks my heart that I have not seen her since the day before the accident. Well, Monday the 11th, Ziggy somehow got out. All I could think about were all the busy intersections that surrounded my old neighborhood, combined with how quick she moves. It was a very long and agonizing five days before she finally came home on her own, without a scratch, late Friday night.
Ziggy as a pup
So, after the “high” of the River Run, the extreme “lows” and the stress of the swollen legs, the new muscle relaxer, the horrible UTI, and my dog being lost, the last few weeks have proven to be emotionally and physically exhausting! But they are over with, and today is a new, positive day! 

I really want to talk about my hands. I realize that if you never personally been around somebody with a spinal cord injury, you may not realize the extent of what that injury causes. Now, I never took anatomy but I have learned a lot since my accident, so allow me give you a brief lesson on the spinal cord. There are three sections to your vertebrae, the lumbar is the lowest part of your back; the largest section is the middle section, which is your thoracic; and finally the cervical vertebrae, which is what your neck consists of. From top to bottom it goes C1-C7, T1-T12, L1-L5. The spinal cord basically controls everything, it is what the brain uses to send signals to the entire body. It controls bladder function, bowel function, muscle control, temperature regulation, sensation and of course, movement. The higher the vertebrae, the worse the injury. For example, a cervical injury results in paralysis from as high to the neck, whereas injury to the lumbar usually results in paralysis to the hip level. There is a COMPLETE spinal cord injury and an INCOMPLETE spinal cord injury. With a complete injury, your spine is completely severed, meaning you have absolutely no sensation or feeling below the point of injury. The likelihood of recovery after a complete injury is highly unlikely. My injury, however, is incomplete. With an incomplete injury, doctors cannot tell you what may or may not occur with your recovery. There is actually no way of knowing because there is no way to judge what nerves were and were not damaged. In fact, there have been cases of people with incomplete injuries who regain bladder and bowel function years after their injuries. All incomplete injuries are totally different, you cannot compare any incomplete injuries. It is because I have a incomplete injury that I have full sensation. I can feel something is touching my legs, but I cannot distinguish between sharp and soft. I can tell when I have a full bladder, but I cannot control the urge or the muscles to hold or release it. I also cannot feel temperature below my neck, you could lay icepack on my stomach and I would not flinch. My body thermometer is basically broken. I do not sweat, so I must be extra careful out in the heat.

Having a C5 fracture, doctors originally predicted it I would have no movement passed the biceps- which is typical for a C5. However, having that incomplete status proves there is no way to determine my possible recovery outcome. Not only am I able to move past my biceps, but I also have wrist control/movement- which is actually a “characteristic” of a C6 injury. Remember, the lower the better. Honestly, the wheelchair is the easy part. It is the lack of hand function that makes life a daily struggle. If you want a real challenge, try to go just an hour with no finger function.
This is not my hand and I do not wear a brace, but just to give you an idea

I’ve posted a picture to illustrate what my hands look like, but just hold up your hand and let your fingers go limp. I have no grasp, meaning anything I do must be adapted in some way. My eating utensils have handles that fit my hand; my makeup is built up with large pieces of foam; at home I use sippy cups; my hairbrush and cell phone have straps that allow me to hold on to it. I cannot hold a sandwich without it falling apart. Eating nachos? Forget about it! Chips are way too thin for me to grasp. Just think of all the things you use your fingers for! To use the computer, I have a large old-school trackball mouse; a typing apparatus that allows me to chicken peck each letter; and Dragon Dictation when it comes to “writing” long blogs such as this. To play the Wii, I have the remote strapped my hand and I used my left hand to press my right hand to hit the buttons. Needless to say, any games that involve holding down a button while simultaneously moving are out of the question. While I am able to do my makeup with the foam buildups, I am not able to open any of it. When we go out shopping, I am not able to pick up anything off the rack to look. Even my new manual wheelchair has knobs on the push rims so I am able to maneuver it; otherwise, I would not be able to grasp the wheels to move it. While it is great that I have the Bioness units for my hands that stimulate the muscles in my hand to open and close, I am not able to put the Bioness on myself; nor is it easy or practical to take them places where they would be useful.

An example of the type of buildup I use to eat

What I use to type

My lack of hand control is my biggest struggle, it is what makes life the hardest. When I get frustrated or sad about my situation, it is mostly because of my hands. But even still, when I find I’m getting upset I always remind myself how much worse it could be. I imagine how hard life would be if the doctors prediction would have been correct. How can I complain about lack of finger function when I should just be blessed that I can move past my biceps? I think about how much harder life would be if I couldn’t move my arms at all. Like I always say, it is all about perspective. There is rarely a case when things really just could not be any worse. Sometimes it drives me crazy when I get on Facebook and see the things that people complain about. I would love for my only problem to be that it’s Monday and I’m exhausted from the weekend! You really don’t realize how good you have it until it is gone. It’s the little things you take for granted. Like taking a shower. For three months I had nothing but bed baths. All I wanted was a real shower; how often when you‘re in the shower do you think, “this could be my last” because I‘ll tell you what- I sure didn‘t think that June 12, 2010. I would have had extra appreciation for standing in the shower by myself for long as I wanted. Today, getting a shower is almost exhausting. Having to use the Hoyer lift to transfer to and from the shower chair and having my mother assist with everything. But I still think back to the bed baths and learn to appreciate what I have now. Like I said before, it’s the little things you take for granted. The next time you want to complain or get upset about something, really consider it. You might discover it’s not so bad after all.  Learn to count your blessings and not your problems.

Stay tuned for the next entry: "Devotees, Pretenders and Fetishes- Oh My!!"

Jul 1, 2011

The biggest disability in life is having a bad attitude..

Well, as usual, never a dull moment around here! In fact, sometimes I cannot believe how fast the days go by. I am so happy to announce that the Southern Belle T-shirt fundraiser is OVER!! We started selling them in April; 2 ½ months later, we have sold over 1500 shirts!! Thanks to Southern Belle, Laura Cole, Brad Martin, and everyone who bought shirts and donated money, we have raised roughly $14,000! This is enough for one month and some change at the Shepherd Center in Atlanta!! Never in my wildest dreams did I expect this to be such a phenomenal success. I am so extremely grateful and blessed to have such wonderful support. One month is great, but just like they say about company- the more the merrier! This is a marathon, not a race. I will continue to advertise and fundraise until I can get all the help I need. The next fundraiser is only a week from tomorrow, July 9. A River Run, hosted by Sea Dawgs in Moss Point, will be take place between 8am-4pm. Tickets are $50, there´ll be live music and food all afternoon at Sea Dawgs, along with a few arts and crafts vendors. I will be at Sea Dawgs that afternoon for all the fun! For all information please visit Katy Blake River Run. If you are interested in volunteering in any way, there will be a meeting Tuesday, July 5, at Sea Dawgs at 6pm. For those on the Gulf Coast, please help us in spreading the word!
This past Tuesday, Laura and I had a brief interview with Fox 10 out of Mobile, AL. It was a live interview and we had no preparation whatsoever, but I think we did a pretty OK job (that has been the general consensus, anyway). If you have yet to see the story, you may do so here. Wednesday afternoon I had an amazing interview with USA Today. I have no idea what section or when it will be published, but just the fact that it´s USA Today is  very exciting! I will be informed when it is posted and of course I will share the link here and on Facebook. I get so nervous doing these interviews, that probably sounds crazy, I mean I definitely know my story by heart, but there is so much to it that I don´t want to leave out anything when telling it. When speaking with the reporter from USA Today, at first she said she was worried about asking anything too personal. I had to laugh. I always say that when I became "conscious" two weeks after the accident and realized I had been getting bed baths, I was mortified. I have always been extremely modest. That went out the window real quick! I don´t know what personal space is anymore. Especially when it comes to talking about the accident, I have no issues with it; in fact, I find that when I talk about it, it helps me. When I was in the hospital, no one ever brought up the accident. I suppose they were waiting on me to say something first, and the first time I actually talked about it, I cried like a baby. I do not mind talking about it at all, but I hate to think of the exact moment  when it happened. Thinking back to how scared I was,I  truly believed I was going to drown. Each time after that it has gotten easier and easier. If my story can help inspire others or prevent another diving accident from happening, I will talk about it until I´m hoarse! The USA Today reporter even said I should write a book. So when you hear of "Rants and Ramblings of a Quadriplegic Diva"- that will be me! People always say I should be a motivational speaker, but I hate to talk in public... I would much rather just be a motivational writer.
While all the media coverage has been wonderful and truly helpful, it was never my intention to be famous. That is the farthest thing from my mind! I just want to get the help I need and believe that I deserve. If I become famous for anything, I wanted to be for being a walking quadriplegic. I want to be proof to others that miracles do happen. I want to provide strength for those who believe they are weak. I want others to see you can overcome adversity. That with hard work and a positive attitude, you can achieve what you truly desire. Half the battle is believing you can do it. Of course some days it is hard not to get frustrated, but you should not give up- push through the frustration, use it as strength. The feeling of accomplishment is a feeling like no other, it is something that no one can take away from you.
I cannot believe it is Fourth of July weekend already! I think back to last year when I was in ICU for July 4. My family and my nurses decorated my room with American flags, glow necklaces, and other festive decorations. I had a great corner room and I could hear fireworks going off all night. The only thing that upset me was the fact that I did not get to eat any BBQ! I will definitely rectify that tomorrow. My brother, his wife and new baby (Olivia Jane- 3 months), are on their way as we speak from Tampa, FL. We have yet to meet Olivia so we´re all very excited. In addition, I will have roughly 20+ cousins/aunts and uncles for a get together tomorrow. Along with 5 of my siblings, 2 nieces and 4 nephews, it should be a very exciting weekend!! Yes, in case you did not know, I come from a large (and wonderful) family! One other thing I want to mention regarding this holiday weekend, any time really, is safety. It should not have to be said, but PLEASE do not drink and drive. Always remember to wear your seatbelt. Do not dive where you do not know the depth of the water. Don´t push others in the water. Spinal cord injury does not care who you are, it could happen to anyone anywhere at any time.