Friday, November 28, 2008

Upcoming Surgery

Hello everyone.

On Monday, December 29, I will be having minor surgery to switch out my Baclofen pump. Because I have a spinal cord injury that is incomplete, I have muscle spasms. Most of the time they are full body spasms that include my legs, arms, and back; they last anywhere from 5 to 20 seconds. There is a medicine called Baclofen that helps with spasms and reduces the intensity of them. I take 15 mg orally a day. I also have a Baclofen pump that is inserted just below my skin on the right side of my abdomen. The pump has a catheter that runs around my back and is inserted into my spinal cord. I receive a total of 1189 micrograms (there are 2000 mcg/per milliliter) of Baclofen a day into my spinal cord to help reduce the spasms. Every six hours, the pump administers about 275 mcg, four times a day. When the drug goes directly into my spinal cord, it gets to me faster and bypasses my digestive system, absorbing differently.

My Baclofen pump was inserted in November of 2003. Every three weeks someone comes to my home to refill the pump with 18 mL of Baclofen. She sticks a needle into the center of the pump, draws out the remaining Baclofen, and refills it again. The pump is about the size of a hockey puck with a rubber stopper the size of an eraser head that the needle goes through. The battery life of a Baclofen pump is 5 to 6 years. When the battery runs low, the Baclofen pump will beep at a constant rate letting me know. It beeps for about a month before the battery dies, however, I wouldn't want get to the point where it beeps and I only have 30 days to schedule a surgery to replace it. That is one reason why I am going to have surgery to get my pump switched. I have my winter break from the middle of December through the middle of January, so the timing is convenient. Also, they have come out with a new kind of Baclofen pump called the synchromed 2. It is the same size, however, it holds twice as many milliliters. I will only have to refill it every six weeks instead of every three.

If I didn't have the Baclofen pump my spasms would be much worse than the description in the first paragraph. I would probably have to restrain my arms and legs to my bed rails, and hope that I wouldn't fly out of the bed. I am very thankful for my Baclofen pump and am excited to get the new one. Wish me luck! I will talk more about it after the surgery is complete.


Thursday, November 27, 2008

Happy Thanksgiving

All in a Word

T for time to be together, turkey, talk, and tangy weather.
H for harvest stored away, home, and hearth, and holiday.
A for autumn's frosty art, and abundance in the heart.
N for neighbors, and November, nice things, new things to remember.
K for kitchen, kettles' croon, kith and kin expected soon.
S for sizzles, sights, and sounds, and something special that abounds.
That spells ~~~THANKS---for joy in living and a jolly good Thanksgiving.
-Aileen Fisher

Thanksgiving is my favorite holiday. I love the food and the time spent with the family. Today we're hosting Thanksgiving at our house. I think there will be about 12 of us. Everyone is arriving at 3 PM and we are eating at 4 PM. The house smells wonderful! I am also excited for apple pie (after I stuff my face with turkey, mashed potatoes, and green beans). I hope all of you are having a wonderful Thanksgiving and are surrounded by people you love because today is the day to give thanks.


Wednesday, November 26, 2008


"I have never been especially impressed by the heroics of the people convinced they are about to change the world. I am more awed by the heroism of those who are willing to struggle to make one small difference after another."
-Ellen Goodman

I have many heroes in my life. They are the people that have stood by me throughout my life. They are the people that are willing to give up their time to spend time with me. They are the people that have made a difference in my life just by being in it. They are willing to be there for me when times are tough. They don't know their heroes; it is invisible in their eyes, but to me they're making "one small difference after another", just like the quote says.


Tuesday, November 25, 2008

Crazy Cats

These are our crazy cats. Ty (5 1/2) is on the left and Toby (2) is on the right. I am in bed and they are laying in between my legs. You would think that they could tell time. Every morning at 6 AM Ty comes in my room and jumps up onto my bed. He does the same thing at 6 PM. A little later Toby will come in my room and jump on my bed on top of Ty. He then will bite Ty's neck until he gets annoyed and leaves and then Toby settles down in his place. This happens every single day. I don't know what it is about these two and my bed. Maybe it's because that's where they get the most attention. They also like to jump up onto my lap when I'm in my wheelchair. I think they like the free ride. I also take them into the elevator with me when I go upstairs. Yes, they are spoiled. I don't know what I would do without them.


Sunday, November 23, 2008

The Power of Technology

For those of us who lack independence, technology can be a powerful thing. It frees us from our inability to communicate otherwise. It is our way of gaining back the independence that we lost or do not have. Technology is growing every day, allowing us to express ourselves and have the independence to do things that we would not otherwise be able to.

I myself use technology for daily activities. In order to type and move freely through the Internet I use a voice-activated program called Dragon NaturallySpeaking. I am able to speak into a microphone and use commands that allow me to independently use a computer. It is so easy to use and cool that you can just say what you want and have the words magically appear on the computer. If you click on the link, there is a video demonstration of how Dragon works.

Also, in order to have independence while lying in bed, I use a voice-activated Environmental Control Unit by Quartet Technology Inc. This box and microphone give me all the independence I need to control things in my environment. It is capable of controlling anything electronic or that can be plugged in. I use it for my radio, phone, DVD player, and TV. It is able to control lights as well, however, it doesn't work with my lights because it is not on the same strip. If I wanted to, I could have it control my bed, lamp, fan etc. There are endless possibilities. It is very easy to train and responds fairly well to my voice. By the way, his name is Denver. He repeats everything I say to him. He is very polite and says excuse me when he doesn't understand what I say.

The last piece of technology that I use every day allows me to move freely without help. It is called a Tongue Touch Keypad by newabilities. By using my tongue, I am able to drive my wheelchair with ease. The Tongue Touch Keypad fits in the roof of my mouth similar to a retainer. It has nine buttons to choose from and there is a menu screen with a choice of nine options. If I push the back left button (chair), I will be able to move my wheelchair. If I push the front button (position), I can tilt or recline. There are other features to the chair that work with the Tongue Touch that I don't have. If I wanted to, I have the option to use the Tongue Touch for my computer and environmental controls such as the lights and TV. However, these fancy features come at a cost. I would have to buy each one separately. If you click on the link above, the newabilities website will show you all the features and tell you about the Tongue Touch Keypad.

The Tongue Touch Keypad does have its faults. Because it is a wireless device, other things sometimes interfere. I may be in an elevator and if I'm not on the park mode, the interference will push buttons and make the wheelchair start moving by itself. Funny sounding, but not fun when I'm driving and the interference will make it so I can't stop and I run into walls. I guess it is kind of funny when I think about it after the fact.

I am thrilled to have this type of technology in my life. It is only a matter of time before they come up with something new that will help me become more independent. Often times I have people guess how I drive my wheelchair. Most of them say "with your eyes" or "with your mind". It sounds crazy but this technology is out there. I watched this on 60 minutes a couple of weeks ago. There is a cap that fits over your head and measures your brain and thoughts. It is able to determine which letters you want to use to type on a computer just by you thinking it. I wanted to post the video, however, there was an error. Click here to see the video called "Harnessing the Power of the Brain".

Just think of the other possibilities. I am excited to have shared this technology with you. If you would like to purchase Dragon NaturallySpeaking or the Environmental Control Unit by Quartet, or if you would like to find out more about assistive technology, click here to contact The Speech Gurus.


Saturday, November 22, 2008

Charlie Bit My Finger

I just had to post this video. It is one of my favorites from YouTube. I don't know why I find it so funny. It has been played on The Ellen DeGeneres Show, The Tonight Show, Oprah etc. I'm sure some of you have probably already seen it. If any of you have kids I'm sure you can relate to this video. So, here it is:

I can't understand why he would stick his finger in his brother's mouth again. I found a follow-up video on YouTube from their regional news. It's interesting to see the boys two years later. You can also find other videos from them by clicking here.


Thursday, November 20, 2008

Nursing and Daily Schedule

Because I'm on a ventilator, I have nursing care 24/7. They work 12 hour shifts and most of them work three days a week (full-time). In order to cover every shift, I need about 5 or 6 nurses. However, by December 3, I will be down to 3. Usually it is the nurses decision to leave and move on to a new job. I am constantly worried that a nurse will leave because of whatever reason and we will be stuck without a nurse. It's a struggle to find caregivers who are a good match to work with. We end up interviewing a few before we find one that will work out. Whenever we don't have nursing coverage, my family has to step in and be the nurse. My mom and sister, Kristen, both know my cares.

I don't think many people realize what it is like for a quadriplegic and the daily routine that we go through. My nurses do most everything for me. I wake up every morning at 5 AM to start my cares. I start off with my bowel program. Then I do range of motion and wash my legs and my face. By the time I'm done with these cares, it is 6:30 AM. The nurses change shifts at 7 AM. After the nurses have given report, I then change my shirt and wash my upper body, put my pants on and then get up in my wheelchair. I usually get up sometime between 9 and 10 o'clock. I brush my hair and my teeth and am finally ready for the day. I get back into bed at 5 o'clock and do range of motion again. I am in bed for the night. I go to sleep at 10 PM and do it all over again the next morning. Wednesday and Saturday mornings I skip the bed bath and take a shower. Monday mornings I just wash my hair in bed.

Now comes my confusing and chaotic schedule. I have physical therapy Tuesday Friday at 8:15 AM and Wednesday Thursday at 4:15 PM. During two of my therapy sessions I go in the standing frame. On Monday I get a massage at 9 AM. I also go to school Monday, Wednesday and Friday. Monday and Friday I leave at 11:30 AM and get back around 3 PM. Wednesdays I leave at 10:30 AM after my shower, and get back around 3 PM, just in time for PT. Once a month I see a psychologist, and not to mention the numerous doctor appointments that I have. Don't ask me how I keep this schedule straight. The good thing is that I love staying busy. Could you imagine me taking two classes next semester?

Yes, I do have a lot to go through and many things to do during the day. I didn't share my daily schedule to confuse you or make you feel exhausted for me. I just wanted people to know what I and others go through each and every day. I want people to know that when times may be tough, not to give up. Just because your day may seem stressful or chaotic, others may be having an even harder day. I don't know how I do it, but I manage to stay positive and never give up. There are others who may not be as strong as me and are having difficulty living the life of a quad. Take this time now to think about those who may be struggling with their daily schedule, self-esteem, lack of independence etc.


Tuesday, November 18, 2008

See Me for Me

What causes people to stare at the unknown? Fear? Curiosity? What causes people to react differently to those with disabilities? Unacceptance? I know what it's like to be stared at. I know what it's like to have people stop in their tracks just to get a glimpse of the unknown. Why can't people just see me for me and not my disability? Why can't they just accept who I am and what I'm about. I may not look like everybody else, but that doesn't give others the right to stare. These questions and thoughts inspired me to write this poem:

See Me for Me

I am alive.
I am here.
I do exist.
Yes, I look different.
I have a disability.
I am paralyzed.
I am in a wheelchair.
I am on a ventilator.
Does that matter?
Apparently it does.
I don't like staring.
I don't like gawking.
I don't like whispers.
I don't like pointing.
See me for me.
I like people.
I have friends.
I have caregivers.
I have family.
I make a difference.
I am friendly.
I care.
I love.
I speak.
I write.
I paint.
I am me.

I know this post may be shocking to some people or a wake-up call to others. I wake up every morning and say to myself "What can I do today to make a difference? Who am I going to inspire?" However, I get interrupted by curious and fearful people who choose to stare at the unknown. Stare at someone with a disability who is just trying to make it through the day. I am here to tell all those people to see me for me. See others with disabilities for who they are. I would rather have someone come up to me and ask me what happened; ask me who I am and what I'm about; ask me how I got to where I am today. I am proud of who I am. I am proud of the challenges that I have overcome. I am proud of what I've accomplished. I am proud of the person I am today. And I will tell you that; if only you would just ask.

Now, most of this post has been kind of negative. I guess I'm just letting go of some of my frustrations. It didn't used to bother me as much as it does now. Maybe because I'm starting to notice it more. I used to just ignore it. Even though I think it is rude, I don't usually get upset with the people who are staring. I know they are just curious. Many of them have never seen someone on a vent before. Especially little kids. Sometimes I just smile at the people who are staring. However, I need to come up with some line or a sign to put people at ease; something to fulfill their curiosity. I think I'm going to put a sign on my wheelchair that says "I was in a car accident". That would solve a lot.


Saturday, November 15, 2008

Site of Interest

I came across this amazing website called The website consists of multiple choice questions of different subjects that one can answer. For every correct answer, they "...donate 20 grains of rice through the UN World Food Program to help end hunger." I am now officially addicted to answering these questions and watching this bowl fill up with rice knowing that I am making a difference. Click here to visit this website and help end hunger. I have also added the link below under Other Blogs and Sites of Interest. You should also check out the other links that I have posted in that location. If they are of interest to me, they may be to you as well.


Friday, November 14, 2008

Getting Stronger

I stood for 28 minutes yesterday. I'm excited that my blood pressure is finally compensating when I'm standing. It will drop at first and then rise after a couple of minutes when my body gets used to being straight up at 90°. Yeah for me!


Thursday, November 13, 2008

The Journey

One day you finally knew
what you had to do, and began,
though the voices around you
kept shouting
their bad advice--
though the whole house
began to tremble
and you felt the old tug
at your ankles.
"Mend my life!"each voice cried.
But you didn't stop.
You knew what you had to do,
though the wind pried
with its stiff fingers
at the very foundations,
though their melancholy
was terrible.
It was already late
enough, and a wild night,
and the road full of fallen
branches and stones.
But little by little,
as you left their voices behind,
the stars began to burn
through the sheets of clouds,
and there was a new voice
which you slowly
recognized as your own,
that kept you company
as you strode deeper and deeper
into the world,
determined to do
the only thing you could do--
determined to save
the only life you could save.
-Mary Oliver (The Journey)

I'm not really sure how to pull apart this poem. I think it has to do with self determination. It's really interesting how some poems can make no sense at all but have this hidden meaning that makes them great and powerful. Or how some poems make complete sense, but because they're so easy to figure out, they don't mean as much.


Tuesday, November 11, 2008

Spring '09

Hi everyone.

I signed up for classes next spring. Lately, I have only been taking one class at a time. At this rate, it will probably take me at least 10 years to finish. Oh well, at least I'm going. However, I decided to take two classes next semester. It will be tough to balance two classes, four days of physical therapy (including standing), massage therapy, doctors appointments etc. But I like a challenge. The two classes I signed up for are Fundamentals of Public Speaking and Stress Management. I will be going to Normandale Monday through Thursday.

I'm actually pretty excited. One of my friends is taking the Stress Management class this semester. She told me that they work on breathing exercises to help lower stress and calm down. I don't know how good I'll be at that, but I'll try. Breathing isn't exactly my strong point, but speaking is. I know that class will be fun for me and I think I will learn a lot from it. I wanted to take it with the same communications teacher that I took Small-Group Communications with. However, every semester he teaches Public Speaking in the evening. That doesn't quite work for my schedule and I didn't want to wait any longer to take the class so I decided to take it with a different teacher.

At some point I think I'm going to take a Phy Ed class. I was thinking about taking Fitness Walking or Fitness Jogging. Could you imagine the look on the teachers' face when I rolled through those doors all suited up and ready for the fitness class? I'm crazy I know, but I think it would be funny. Just like the teacher for my Stress Management class is going to try to get me to take deep breaths so I can have a less stressful day. That will be interesting.


"The principle goal of education in the schools should be creating men and women who are capable of doing new things, not simply repeating what other generations have done; men and women who are creative, inventive and discoverers, who can be critical and verify, and not accept, everything they are offered."
-Jean Piaget

Saturday, November 8, 2008

A Poem by Me

Love's Way
I think about it every day and night.
There's something about it that's just not right.
It haunts me in my sleep and follows day by day.
I don't know how to deal, there's just no way.
I try to avoid all night long.
It's just too hard because it's just so strong.
So here comes to stay with me,
that's just the way love is going to be.
-Jenni Taylor

I have written many poems that will show up in various posts. No, I was not in love when I wrote this poem. Most of my poems come to me in the middle of the night for no reason. This poem was one of them. I don't know why or how I thought of it, I just did. I like it though. I think it really shows what some people go through when they are really truly in love, whether they want to be or not.


Friday, November 7, 2008

Spoken Words

Thursday, November 6 I spoke at Richfield high school. It was a great opportunity to strengthen my speaking skills and ability. I also made some connections and met some great students and teachers. I spoke to three separate classes in a row. The first class started at 9:17 and the last class ended at 12:12. Most of the students were in ninth grade. Each speech varied in its content and each class varied in students. Some students asked more questions than others, which usually makes it easier.

This speech was volunteer, and although I like to volunteer my time, I hope to one day get paid for every speech I do. It took a lot to get to Richfield high school by 9:10. I woke up at 4:30 in the morning to start my cares. I normally get up into my wheelchair sometime between 8:30 and 9 o'clock. Yesterday, I got into my wheelchair at 6:45. Yes, it was a very long day, but it was definitely worth it. I love speaking and sharing my story. It is nice to motivate others and it feels good to wow them with my positive attitude and my ability to overcome challenges. If any of you know of a place that would have me as a speaker, I could really use the experience. Even if they are not able to pay; let me know.


"Motivation is everything. You can do the work of two people, but you can't be two people. Instead, you have to inspire the next guy down the line and get him to inspire his people."
-Lee Iacocca

Wednesday, November 5, 2008

New Record!

Yesterday I set a new record for me in standing! Usually I go up once and then my blood pressure drops so I have to go back down. The second time is when I stand for the longest. Yesterday, I went up once and stayed up for a full 25 minutes. This is great news. That means my body is adjusting to standing and soon I will be able to do it with ease.

I had psychology today. We took a quiz and I got 4/4. I also found out that I got 15/20 on my test that I took last Friday. Not my best score, but good enough for me.


Tuesday, November 4, 2008


"Where faith is there is courage, there is fortitude, there is steadfastness and strength... Faith bestows that sublime courage that rises superior to the troubles and disappointments of life, that acknowledges no defeat except as a step to victory; that is strong to endure, patient to wait, and energetic to struggle... Light up, then, the lamp of faith in your heart... It will lead you safely through the mists of doubt and the black darkness of despair; along the narrow, thorny ways of sickness and sorrow, and over the treacherous places of temptation and uncertainty."
-James Allen

Wow! This quote is deep. I had to read it four times to get a hold of the intensity and meaning behind it. One of my interpretations of this quote is that faith will help you through the tough times. There are many other interpretations and meanings hidden inside. To me, it doesn't even matter what religion you are as long as you have faith and believe.


Sunday, November 2, 2008

Standing at 90°

Hello everyone.

I want to update you on my standing. I have stood about five times and I am now on a set schedule of standing twice a week in physical therapy. My longest time at once was 15 minutes. I didn't think I would be up that long so soon. I have to keep the blood pressure cuff on just in case. I usually have to take it about every two minutes, because sometimes my blood pressure can go down without me knowing. It is easier and I find that I can stand longer in the morning than in the afternoon because I'm not as fatigued from daily activities. My blood pressure goes down more in the afternoon because I do get so tired.

I'm excited to be able to do it for longer like 30 minutes but it takes a while to build up to that. Although, I do think I am already starting to feel the benefits. My back hasn't been hurting like it usually does and I feel like I have more energy during the day. Standing helps prevent osteoporosis and also strengthens bones and muscles. It will also help strengthen my back. The picture is of me standing in my bedroom. I'm 5'8", but the stander is up off the ground so I stand taller than everyone who is helping me. It is nice to be able to see the top of people's heads instead of up their noses.


"Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow"."
-(This is a quote from a plaque hanging in my room. I don't know who the author is.)

Saturday, November 1, 2008


Throughout life you will learn
that sorrow will not remain.
You will see that it is
like a butterfly emerging
from its cocoon to make way
for greater things.
-Corrine DeWinter

When a caterpillar spins a chrysalis, does it know its life is going to change and that it's going to turn into a beautiful butterfly? When a baby is born, does it know the path that it's going to live and the life-changing moments that may occur? Change happens every day whether it is good or bad. People die, give birth, get jobs, lose jobs, graduate high school or college, etc. Some is just simply change and some is life-changing. Like an accident that changes you from an active teen to being paralyzed and in a wheelchair.

Today is the sixth year anniversary of my accident. This day doesn't frighten or scare me; I don't get sad or depressed; I don't think why me or about all the "what ifs". I just live and thank God that I am still living and still hear on this earth able to live my life with this change. The accident did change my life, but it didn't change me. I'm still the same person I used to be. I still want to love and be loved. I still need friends and family to support me. I want to be an advocate for others with disabilities like me; others who have faced similar changes. I also want to show people not to be afraid of change. Because of this change I live my life differently. It may be hard at times, but I'm happy and that's all that matters.


"New beginnings start as the seed of a flower does, buried, unseen, but destined to bloom.
-Corrine DeWinter