Friday, March 30, 2012

Asking for a Bite…

How exactly do you eat? Yes, I know: food enters the mouth, jaw goes up and down, teeth do their thing, and so on ... But I figure that your nurse or assistant or someone physically handles the food. So if you're faced with a plate of, say, steak and potatoes, do you literally ask specifically for a bite of potato, or a bite of steak, then another bite of steak, then a drink, etc.? In the same way that someone else might ask for the salt to be passed? Or is it just kind of obvious that one piece of food follows another?

I had to laugh a little bit when I read this comment. Not because it was anything silly to ask, because I know people are just curious, but because I never thought of explaining my eating process. I'll give a little background first.

Since I am completely paralyzed from the neck down, I require daily assistance to help with my every need. This includes bathing, dressing, eating; more specifically-brush my hair/teeth, scratching an itch, moving my arm a certain way, changing positions, range of motion, bowel/bladder cares etc. I have 24 seven nursing care and PCA's that help out four hours every day. My life is nonstop with lots of interaction between me and the people helping with whatever I need. Right now I have six nurses (3 on days and 3 on nights) and two PCA's.

Questions have come up about how I manage my care. I direct all my own cares, so I'm constantly telling others what to do (in a polite way). By now I think I should get paid for all the managing and directing I do. When I need something specific, say changing positions or a drink of water, I just ask. This is the way I like it and the official meaning of "directing" my care.

Because of "the system" and the way charting is set up, my nurses are supposed to ask me throughout the day if I need things; this may include water, stretching, PRN medications etc. It also includes pain management. If I do have pain when they ask most of the time I have to rate it on a 10 scale and then describe it (i.e. aching, throbbing, stabbing etc.). Sometimes when my nurses ask me things it can get a little irritating to me because the way I see it if I have pain or I need something I'll just tell them or ask. I'm also a little stubborn so occasionally if one of my nurses says "do you have pain?" I may say no even if I do so I don't have to rate it or describe it. Now to some that may seem crazy to lie about a simple thing like that but when you have questions being thrown at you 24 seven from all different directions, it can get agitating. 

I do have specific ways I like things done or to do things. Just like anyone else would have their routines, so do I. The way I do certain tasks may seem particular and tedious, but I just think about the fact that everyone does things their own way and has routines except they don't think about it as they're doing it. For example, when someone brushes my teeth with my electric tooth brush they start on the bottom left, then go to the bottom right, then the top left, then the top right. I'm sure many of you brush your teeth the same way every time, you just don't realize it.

As far as eating goes, it's the same type of thing. Whoever is with me at the time feeds me what I want. Sometimes I just have them go around the plate, eating one bite of each thing after another in a clockwise motion. This way I don't have to ask every single bite what I want because that can get to be a little much. Otherwise, if I want something specific, like two bites of one food in a row or a drink I'll ask. This has seemed to be the best way to eat that works out for both me and the person doing the feeding.

Like I said, most people have their own ways of doing things and routines in their life that they're comfortable with and that make it easier. I challenge you to start thinking when you're brushing your teeth, getting dressed, eating, etc. if you do it the same way every time. It will be an interesting test and I bet you'll find that you have a routine you didn't know about. For me, I continue to direct my own cares, asking for and requesting every daily need from dressing to bathing to water to food. 

If you found this post insightful or discovered a routine you didn't know you had, send me a comment; I'd love to read what you have to say!


Tuesday, March 27, 2012

Busy, busy, busy!

I have two finals this week for my logic class and a quiz for short stories. I've also been extremely busy getting ready for the Ms. Wheelchair Minnesota 2012 pageant coming up April 2. I created a brochure for the event which has taken up all my time. I'm finally just about finished so that's good.

For the past two weeks I've had this bump in my gum that hurts. I went to the dentist yesterday and found out I have to have a root canal. I probably will be doing that sometime next week.

It's been fairly nice outside so I've been sitting in the sun a lot. I think I'm starting to get a tan already! Spring definitely came early this year in Minnesota; everything's turning green and budding. There's close to 100 ducks in the marsh in my backyard. It's so much fun to watch them.

I'll give you more updates once things settle down and have done with my finals.


Thursday, March 15, 2012

My Body: Spasms and Pain

During my accident, I broke my neck at C-1 C-2 and injured my spinal cord. There are two types of injuries, complete (spinal cord severed) and incomplete (spinal cord bruised or crushed). My injury is the latter, incomplete. Because of this, my brain is able to send some signals through my spinal cord to my body; this is the reason why I have feeling and slight movement. I also have muscle spasticity below my injury level which results in muscle spasms. Usually a spasm is caused by simulation to the body in various ways including range of motion, pain, infection etc. In instances like these, my body moves, shakes, and twitches as a result.

It may be hard to picture what a muscle spasm looks like unless you have witnessed one before. I've had many people come up to me during one and say "you can move!?!?" Disappointingly I have to tell them "no, it's just a spasm." One time my arms spasmed up at the same time someone tried to shake my hand. That made for an awkward situation for the other person because they thought that I was actually reaching out to shake their hand. I always react or come back with a humorous response to put people at ease in those situations.

Sometimes I get frustrated with my body. Often spasms come at inconvenient times and can disrupt my daily routine. Most times I have a spasm, my muscles get extremely tight and it makes it very difficult for someone to move me or do cares afterwards. It can easily get to the point where the spasms actually cause me pain in places I didn't have it before. This is especially true if I get twisted in a strange position because of them.

On the flip side, spasms can actually be good. Since I'm unable to move, they act as a form of exercise for me. One reason a spasm may happen is if I haven't changed position for a while. The spasm allows my body to move in ways it doesn't usually get to. In this case, occasionally it might feel good to spasm because it stretches my muscles. Another reason I would have a spasm is due to pain. My body reacts to the feelings in my body, so if I'm in any sort of pain it tries to reposition itself by spasming. I guess in a way this can be good also if I don't have the time to stretch or change positions to alleviate the pain. Spasms can also be a sign of an infection somewhere in the body; the benefit of this is that I can figure out if I have a urinary tract infection.

There are a few medications that can help with spasticity. One of them is baclofen, and that is what I used to take orally for a few years after my accident. When I reached the maximum dose I could take, and my spasms were still extremely bad, I had a baclofen pump surgically implanted. A tube from the pump wraps around and is inserted into my spinal fluid. On a set time period it releases a certain amount of baclofen. This helps it get into my system quicker and works better than taking it orally.

Lately, I've been having a lot more spasms than usual. This is caused from the pain in my right shoulder which is possibly due to my arm slowly dropping out of the socket. I had an MRI done to confirm this and in the last six months have tried multiple things to relieve it (i.e. ice, heat, massage, physical therapy, high adhesive tape, ultrasound, tens unit etc.). I've also resorted to some pain meds including ibuprofen, Tylenol and even Valium. Pain wise, some days are better than others but it varies with different activities and stresses. I think I'm doing all the right things, but only time will tell whether or not everything is helping.

Another thing that happens with my body is muscle tightness. Since I'm either sitting or lying down and because my muscles can get so tight they are pulling my bones causing a curve in my spine. This makes it really uncomfortable to be in some positions, so when I'm up in my wheelchair I wear a TLSO (back brace) to help straighten my spine. I also wear AFO's (foot braces) to keep my feet from tightening up and turning in. At night, I use elbow and hand braces to keep my arms from tightening up. Click here to learn more about my braces.

There are many things that go with being a quadriplegic but these are just a couple that stand out. If you have any questions about anything I said or want to learn more feel free to ask; I'm very open. Also, to learn more about muscle specificity or anything related to spinal cord injuries click to go to


Wednesday, March 7, 2012

The Don't Quit Poem

No matter what happens or how hard things get, I don't quit. I keep going and push myself as much as I can because I know that I can get through anything. Although I may have many struggles or challenges that stop me in my tracks, I do whatever I can to overcome the obstacles. It doesn't matter if it's big or small, I continue to stay positive and live every day to the fullest. This poem describes my feelings perfectly and how I strive to never give up.

The Don't Quit Poem

When things go wrong, as they sometimes will,
When the road you're trudging seems all uphill,
When the funds are low and the debts are high,
And you want to smile, but you have to sigh,
When care is pressing you down a bit,
Rest, if you must, but don't you quit.

Life is queer with its twists and turns,
As every one of us sometimes learns,
And many a failure turns about,
When he might have won had he stuck it out;
Don't give up though the pace seems slow--
You may succeed with another blow.

Often the goal is nearer than,
It seems to a faint and faltering man,
Often the struggler has given up,
When he might have captured the victor's cup,
And he learned too late when the night slipped down,
How close he was to the golden crown.

Success is failure turned inside out--
The silver tint of the clouds of doubt,
And you never can tell how close you are,
It may be near when it seems so far,
So stick to the fight when you're hardest hit--
It's when things seem worst that you must not quit.
-Author Unknown

I also found this really cool video using the poem.


Monday, March 5, 2012

A Well Deserved Break

I am on spring break this week which is earlier than usual. But it is a break well deserved in my book. I've been working super hard on homework these last couple months and am in need of some free time to relax. I painted for the first time in a few months today. It felt so good to do something "for fun" instead of work. I thought about painting something with trees, but decided I needed to just let it flow. Painting helps put my mind on ease and gets my creative side out. I posted a pic of it below.

Friday I'm going to be speaking to about 50 seventh-graders at Richfield Middle School. It may be one of my last speeches as Ms. Wheelchair Minnesota. Although there will be plenty more for me to come, the end of it will be bittersweet. I spoke to the eighth-graders a few weeks ago and that was an amazing experience. They responded so well to me and really listened to what I had to say. The other day I received thank you letters from each one of the students. It felt really great to know that I touched and inspired them and that they will remember me. Some of the letters actually made me tear up just reading what they took away from my speech.

It is times like this that make me realize how important my life is and why I was given the chance to continue living.


"Life is not measured by the number of breaths we take, but by the moments that take our breath away."

Thursday, March 1, 2012

Endings and Opportunities

Wow! I can't believe it's already March. My logic class at Normandale will be finished at the end of this month and then I just have short stories online until May. That will free up a lot of my time when I only have to focus on one class. I just have three more classes to take after these two until I get my Associates in arts with an emphasis in communications. I'm planning on taking one this summer and two this fall, then graduation! I know it's going to feel great to be done, but at the same time I've been going to college for the past six years and it will be hard when it comes time to break the routine. I'm excited though to start a new chapter and find a job that I love. Throughout this past year I've gotten a lot of experience and opportunities that will definitely help me when it comes time to dive into a career.

The Ms. Wheelchair Minnesota 2012 pageant is coming up April 2. I feel the same way about this as I do school; the end will be bittersweet. Unfortunately, the rules state that I can't try out again but I'm okay with that. Like I was saying, the experience and opportunities I've gained from this have been very rewarding and I'm grateful that I had the chance to do something great and worthwhile. I still have a month left of my reign and probably shouldn't say my goodbyes to it yet, so I'll save the rest of my spiel until after I pass the crown. I will say though, that I'm still looking for events and places to speak at before April so if you have any ideas or suggestions let me know.

I still have a lot to talk about so more tomorrow…


"Don't cry because it's over, smile because it happened."
-Dr. Seuss

“There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle.”
-Albert Einstein

“I may not have gone where I intended to go, but I think I have ended up where I needed to be.”
-Douglas Adams