Tuesday, December 25, 2012

Tis' the Season…

Merry Christmas and happy holidays everyone! I know it's been a couple of months since I posted anything, but I want you to know that I'm still here. I'm not really sure where to begin because so many days have gone by and I have a lot of things to say. I can't possibly fit it all in one blog post because it would be way too long to read. So I'm just going to give it to as I'm able to.

Yesterday I went to my boyfriend, Blake's parents house Christmas Eve day. It was a lot of fun seeing his family and meeting members that I hadn't met before. We ate lunch, opened presents, and then played the dice game (if you don't know how to play you can Google it!) After that we came back to my house where my family was hosting Christmas Eve.

Today after I got up we opened presents as a family. I've had a little downtime and then more family are coming over in a little bit to celebrate Christmas again. After the holidays I tend to get worn out from talking and all the people. I even lose my voice sometimes.

I will back very soon for more blog posts. I'm on break now from school so I have a little more free time.


Thursday, October 25, 2012

Acceptance Letter

I received a letter in the mail the other day that stated I was accepted to the University of St. Thomas!  After months of trying to figure out what I wanted to do after Normandale, I finally have a plan in place.  When I started attending Normandale community college six years ago, my goal was just to graduate with my Associates in communications.  I didn’t want to go on afterwards and I wasn’t really sure what I wanted to do; I just knew I wanted to do something with communications and public speaking.

Earlier this year I got really interested in public relations and was thinking about getting my degree in that.  After looking at a few colleges I decided upon going to Metro state University in Minneapolis to get my bachelors in communications going down the track of public relations.  I got accepted, but after reviewing the different times of their classes I found that they wouldn’t be appropriate for my schedule.  That’s when I started looking into other colleges and degree programs within communications.

Most of them closer to me had communication degrees in which I would have to choose a specific track, say public relations, mass communications etc.  I thought long and hard about whether or not I really wanted to go work at a PR firm and have that be my sole degree.  Upon looking, I noticed St. Thomas’s degree which is Communications and Journalism with no specific track.  By having my bachelors in that, it covers a broad spectrum of jobs including PR, public speaking, writing for a magazine, etc.  That’s how I decided on applying to St. Thomas.  It was a lengthy application that included writing an essay to get in.  I also had to send them both my high school and college transcripts.

I’m very excited that I now have a plan in place and a great college to go to.  There’s just one thing that might be semi-difficult to get used to at first is that they don’t have any online classes so I would have to attend every one of them at the school.  I’m hoping it doesn’t take me too long to finish the program; my goal is three years.  Then, the only thing I have to figure out next is what type of job I want within the communications field.


Saturday, October 13, 2012

Blogging Break…

As you probably noticed, I haven't posted anything for quite a while.  I've been extremely busy as usual with school and other appointments.  Time is not on my side right now.  Just wanted to let you know I'm doing okay and still hear, just taking a "blogging break".  I'll be posting again very soon!


Monday, September 24, 2012

Thoughts About Health

Since I'm able to feel, I have pain in my neck, shoulders and back. I have lots of therapy throughout the week to help reduce and even try to eliminate it. Sometimes the pain is constant and hard to deal with and other times it's gone altogether. There is not much more I can do to get rid of it besides stretching and occasional pain meds like ibuprofen. One thing that tends to happen is that I can tell that I am in pain simply because of the way my body responds (I have muscle spasms) but I may not be able to feel it completely. Then I have to take a combination of meds for pain and spasms.

As far as my nursing staff goes, I understand that working for a C-1 C-2 quadriplegic paralyzed from the neck down isn't always easy. I try to give my nurses breaks whenever possible to allow them to rest their body. Some of my nurses have pain as well in different areas, either from old injuries or working for me. I've had my physical therapist, Nicole, come out and give the nurses training so that they have good body mechanics when moving me.

One of the biggest things is for someone to recognize when something is not feeling right with their body and making sure that they get it taken care of. Especially if it could get worse and cause more damage or pain in the future. I found this list of thoughts that people may think to themselves when they experience feelings about their health and they are ignoring it or don't think it's that bad. Take a look at it and see if there's a dangerous thought that you're thinking about your health that may just be worth taking a second look at.

The 10 Most Dangerous Thoughts About Your Health

Which one is yours?
1. Maybe it will go away.

Are you willing to risk that it won't?

2. It comes and goes.

Why wait until it is a constant problem?

3. It's not that bad!

Compared to what?

4. It only hurts when I…

If your tooth only hurts when you drink something cold, is the problem cold water or a cavity?

5. I know what my problem is…

What is your solution?

6. I was told I've got to live with it.

Don't give up on your body or your body will give up on you.

7. I don't want to know.

What you don't know can hurt you. What you do know can help you live a fuller life.

8. I don't have any symptoms.

Did you know that the first symptom in over 57% of heart disease is a heart attack?

9. I don't have time.

If your time is valuable, can you afford to ignore your bodies signals and risk being affected for weeks, months or even your lifetime?

10. I can't afford it… My insurance won't cover it.

You can't afford not to. What insurance covers your car payment, your rent/mortgage or your groceries? You find a way day after day, month after month to pay for these necessities… What about your greatest necessity, your health?

When any of my nurses tell me they're in pain and therefore aren't able to do things how I normally do them, I most likely will hear one of these 10 reasons why they haven't been able to address it. I can understand to an extent, but it also affects my body whenever I am being moved differently because of someone else's pain. Also, it can sometimes limit some of the stretches and position changes that I do. I think it's important for everyone to not just think everything is okay with their health because they have an excuse on why not to get it taken care of.

There have been multiple times over the past 10 years where my body has told me something is wrong and I listened by going to the ER or getting on some medication. There are also multiple times I could have (or almost) died had I ignored the signs my body was telling me. I'm grateful when I know something isn't right and that I make the right choice to do something about it, for my own health and benefit.


Wednesday, September 19, 2012

My Friend Karly

On August 20, 2012 my friend Karly passed away. She spent her whole life battling Rett syndrome, a disorder of the nervous system that affected her body and speech. Also, because of the neurological aspect of it she had seizures and uncontrollable breath holding along with hyperventilation. Without the use of her voice and the control of her body, Karly struggled with communication up until the age of 10. That's when her family and therapist figured out a way for her to communicate using facilitated communication; with the help of someone supporting her arm she was able to use a keyboard to type out her words letter by letter. The person helping her could then translate what she was saying allowing her to express her feelings, wants and desires. She also wrote blog posts and amazing poetry along with creating music, all by facilitated communication.

I first learned about Karly on the radio, and through that went to her blog site. I left a comment sharing my story. She got back to me right away and after a bit we set up a time to meet at her house. My first impression was pure amazement; I was mesmerized by her intellect, kindness and accuracy as she typed out what she wanted to say throughout our entire conversation. I went home with a new perspective on communication and the different abilities of people with disabilities. We got together many times after that, including meeting at the Science Museum. She introduced me to her therapy horse, Beau and I got to know her family really well.

Although I'm sad she's no longer here, I know she's in a better place. Karly's faith was stronger than anyone I've ever known and she was very much at peace. Her blog and words were read by thousands around the world and she helped many families dealing with Rhett syndrome. According to her mom, after her passing it received over 10,000 visitors. She taught me to live life to the fullest and to not let challenges stand in your way. She will never be forgotten and I'm proud to call her my friend.

Earlier this year Karly wrote a poem in which she instructed her mom to post on her blog after she passed away.
The Invitation
The music of heaven fills my heart with longings I cannot ignore
The time spent on earth full of its possibilities,
becomes a distant memory
compared to what I see through weary eyes
I leave my love behind to offer as a beacon
for those who wonder if it’s true,
I have seen, I have heard, I am certain
It’s a small step for me now on this path
I hear the tears of many who have loved me so well.
Love another like you loved me,
and this world will be a better place.
I see the face of God
I see my new beginning and I am full of joy
I will watch for you, please come.
Karly Whalin
February 17, 2012

Thursday, September 13, 2012

The Minnesota State Fair

A week ago Monday I went to the Minnesota State fair. I met my sister, Kristen and my boyfriend, Blake there. I haven't gone for a few years. When I am there, I have to be careful where I go. There is a place called "the midway" that has a bunch of electronic games you can play with tickets to win prizes. Two years in a row when I've been at the fair in that area my ventilator has reacted funny. It starts beeping and malfunctioning; we think it's because it reacts with of all the electronics. Both times we had to have a respiratory therapist come out and switch my vent. Since then I haven't gone to "the midway" because I'm afraid something like that will happen again.

Two years ago was the last time I was at the fair and it was extremely hot and very crowded. Nothing changed this year. I had a lot of fun but I think I got heat exhaustion. It was at least 90°F outside and very humid. Even though I was drinking a lot of water, my body couldn't cool itself down. I don't sweat below the level of my spinal cord injury at C-1 C-2. This is common in most people with SCI's. Sweating is very important in order for someone to regulate their temperature when they are really warm. Because I don't, it's hard for my body to control its temperature. If it's hot I'm hot and if it's cold I'm cold. It took my body a while to cool down, but after I did I felt much better. (Click here to read another post about SCI's and body temperature.)

The biggest craze for people when they go to the state fair is the food. A lot of times that's why people go. They have everything you can imagine deep-fried including bacon, candy bars, pickles etc. They also have just about every type of food you can imagine on a stick such as what's mentioned above along with alligator, cheese, ostrich, chicken, cheese cake, etc. I've been told though that I'm no fun to go to the fair with because I'd rather eat a salad over something fried or junk food. When going there, the thing is to get a plate of something and share with everybody in the group so people get a taste of a bunch of things and not full on just one thing. When I was there I ate some of my sisters Australian fried potatoes, a bite of a Pronto pup (deep-fried hotdog), a couple of cheese curds and the grilled corn on the cob. I had never had the latter before, but I love corn and it was so good. That's probably the only thing I would definitely have to get next time I go.

What's your favorite thing at a fair, Carnival, or amusement park either in Minnesota or where you live?


Tuesday, September 4, 2012

Blogging Again!

I keep starting new blog posts and not finishing them. I think I have about six or seven Microsoft Word documents saved to my desktop, all blog posts about something different. It's been at least two weeks since I've posted anything. I don't know why I've been having such difficulty finishing a post but I am. Maybe it's some sort of writer's block or something like that. Well I'm definitely going to be blogging more frequently now.

I started school last Tuesday and I'm taking geology with a lab (two lectures and one lab in one week, all on separate days). I really like it so far, especially since I love rocks so much and collecting them. I was signed up originally for the geology class and also a public relations class online, but I ended up dropping the latter. I don't need the credits for the class in order to graduate with my Associates in communications in December.
More blog posts to come soon.


Sunday, August 19, 2012

Today's Technology

In order to be as independent as possible, I count on a lot of different technology. The technology we have today allows me to do many things myself which I would not be able to had it not exist. If my accident had happened say 100 years ago, or even 50 years it would make a huge difference on the way I live and how I do things. My life and the things I would be able to do would be a lot more limited. Luckily, over the years technology has grown tremendously and the market for speech recognition software is increasing.

As a quadriplegic paralyzed from the neck down, I depend on my voice for multiple things which includes using today's technology to be more independent. There are many things out there that can be controlled by voice, although not everything. I've written blog posts before about Dragon NaturallySpeaking, speech recognition software that I use for my computer. The program allows me to train my voice so that it can recognize what I'm saying and identify my speech patterns. Also, I can create different commands based on things I say often or passwords that I use daily. It is how I type, search the web, write papers and blog posts, and communicate with others in different parts of the world. Dragon has given me the independence I need to have full access to my computer by use of voice. I also use voice activation to control my TV in my bedroom. Click here to read a post about Dragon NaturallySpeaking and other things I control by voice.

One thing that I've been wanting for a while, especially since the technology is out there, is to be able to run my cell phone using my voice. For the longest time I've had what many people may referred to as "ancient" cell phones. I started out a few years ago with one that just had numbers and in order to text you have to figure out which letters coordinated with which number. I never had any reason to text so it didn't matter as much. Later on, when I started texting more, I switched to a little bit more user-friendly phone that had a keyboard. My nurses and PCA's typed out all of my text messages.

Seeing all of the newest technology of smart phones develop lately had sparked my interest in trying out a new phone; one that allowed me to be more independent. Obviously I wouldn't be able to use the handy touchscreens or press buttons but many new phones have incorporated voice activation software. The two phones that intrigued me the most were the iPhone 4S and the Droid Razor. After doing a bunch of research about the two online, a week ago I went to Verizon wireless to check them out. I ended up buying an iPhone 4S because it had Siri built-in. I really like it because I can do all of my text messages by voice. It recognizes me fairly well but does have a few drawbacks.

Although it's a huge step up from my last two phones, I'm not able to just fire away commands and start dictating without someone pushing a button first. When searching online I actually couldn't find a cell phone that is completely voice-activated. However, I've really enjoyed being able to ask Siri to schedule appointments, set reminders, send text messages, and see what the weather's like. It's given me another level of independence that I didn't have before.

If you have any suggestions about other speech recognition/voice-activated products you think I'd be interested please let me know!


Tuesday, August 14, 2012

Hospital Hero

I wrote a post a couple weeks ago about all of the opportunities I've been getting to be videotaped for various things. One of them was for Fox 9 news regarding a hospital hero I named from Gillette children's specialty healthcare hospital. It aired shortly after I wrote the post and then the video came out online. Click here to watch the news clip.

I was also sent an e-mail the other day about another chance to be in a video for CareFusion Technologies, the people who make my vent. I'm going to be discussing it more in detail later this week and will let you know more of what it's about when I can. I love sharing my story and also helping out people and organizations share their stories as well. It feels good to be a part of something bigger, and also be filmed every once in a while. :-)


Friday, August 10, 2012

Morning Routine and Applying for Colleges

Although I love getting out of the house and going places, being a quad on a vent paralyzed from the neck down does have its limitations. I start my cares around 5 AM and continue with them off and on until about 8 AM. Most mornings I have some sort of therapy in the eight o'clock hour unless it's a shower day (Wednesdays and Saturdays). By the time I get up in my wheelchair it's usually between 9 AM and 10 AM. If I'm going somewhere during the day, say to school or an appointment, I rarely leave before 11 AM.

It takes a lot to get ready in the morning, especially with all of the things I need to get done. I start early with my bowel program and then do range of motion. After that I usually fall back to sleep for about an hour. My nurse's change shifts every 12 hours, at 7 AM and 7 PM; they come in in the morning and wake me up again around 7:30 AM. That's the same time my PCA shows up (they work 4 hours in the morning). I eat breakfast, do a bed bath and then I get dressed. On shower days I transfer into my shower chair the same time of the day I would do a bed bath, only I wash my hair as well. On Mondays I do a bed bath then wash my hair in bed using a tray that goes under my head. They use a pitcher to wet my hair and the water drains off the bed into a big garbage can.

I receive therapy most morings after I get dressed. After therapy I get up in my wheelchair, which as I said before is usually between 9 AM and 10 AM. So as you can see my mornings consist of 4 to 5 hours of cares along with therapy before I'm even able to leave the house for anything. I can adjust the times I do things, the order and also skip some if need be. However, I don't really like doing that if I don't have to. I have a routine down and don't like to mess it up very often. It may seem like a lot and a lengthy amount of time spent, but one thing to remember is that my caregivers are doing everything for me so it takes quite a bit longer to do things. But, like anybody else I have a routine and ways that I like things done, I just do them differently.

When it comes to going to school, I like to choose classes that start around 12:30 PM or later to allow adequate time for me to get my cares done and get there on time using transportation services. Normandale Community College has been great for me because they have a bunch of different classes at all times of the day so it's been easy choosing classes to take at the time I want. However, not all colleges are like that and I'm figuring this out as I'm applying to schools for spring semester 2013.

I'm certain that after this fall semester I want to go on to get my bachelors in communications. About a month ago I applied to Metro State University in Minneapolis and got accepted within a day. I was all excited and ready to start next year, but then I began looking at the different classes offered. That's when I noticed that each one was three hours long and only once a week; the options for classes were 9 AM, 1 PM or 6 PM. Then I saw alongside of the page that it said that the school is designed for people working full-time and that's why the classes were like that.

Looking at the times I found that only a few classes were offered at the 1 PM timeslot, which would be ideal for me. If I were to attend Metro State, I'd be going only on the sure bet that all of the classes I need to take would be offered at that time and I can't be sure that would be the case. So after figuring this out I decided that I needed to look at other colleges with more class time options.

My criteria I had for colleges that would fit for me was that it needed to be semi-close to where I live, have multiple class times, offer online classes and have the bachelor degree program I was looking for (communications). Searching through the different colleges within the Twin Cities I realized that none of them had all of the things on my list. They were either too far away, only had a night and weekend program, no online classes or no communications degree. If I was going to eliminate one of my items on my criteria list it was going to have to be a school with no online classes.

The two colleges I chose to apply to were Augsburg in Minneapolis and St. Thomas University in St. Paul. They were the two that had three out of four things on my list. Neither have online classes, which is okay but the reason why I like to take classes online is so that I don't have to go there every single day of the week to get the credits needed. The reason I figured it's time that I start just taking classes at the school and not online is because I have to prepare myself for a full-time job after school. That's going to involve condensing my morning routine so I can leave earlier and also being able to adapt to getting out of the house every day.

I'm waiting to hear back from both colleges, but I'm leaning towards going to St. Thomas because I like their degree option better. I will definitely keep you updated on which one I end up choosing. I'm ready for a change of pace and I think that will happen coming soon. For now, I'll just have to wait for a response and prepare for my future further.


"Education is our passport to the future, for tomorrow belongs to the people who prepare for it today."
-Malcolm X

Sunday, August 5, 2012

Cameras All around

I'm finally finished with my online marketing class. I'm not sure what I received for a grade yet. Summer classes are the hardest, especially online ones. They take up a lot of time. My whole summer's been devoted to classes. I haven't had the time to do much of what I want to such as shop, work on my tan, or write (especially blog posts). Though, I have been able to find a little bit of time for film crews.

Lately, I've been around a lot of video cameras. A few weeks ago the company that I get my nurses through came out to my house to do a promotional shoot. It was sort of like a testimonial; they videotaped me outside and doing a few things with my family to show how I'm doing as a result of the great care that I receive from my nurses. I had a lot of fun, and the guy who came out with the video camera works for the show Diners, Drive-Ins and Dives, a favorite show of mine on Food Network.

Then, a couple weeks ago some people from Altimate Medical, makers of the EasyStand stander, came over to film me for their series called Life after SCI. They shot video of me painting, standing in my stander and also did an interview session. The video will probably be done in a couple of months; they're also going get shots of me at Normandale this fall. I'll definitely post it when it's done. Click here to read a post on the Easystand Blog about the day.

The week before last I received an e-mail from the PR person at Gillette children's hospital. They asked me if I could recall someone that made an impact on me who worked at the hospital when I was in rehab, almost 10 years ago. Fox 9 news contacted them for their series "Hospital Heroes", and so Gillette contacted me. Instantly I thought of a nurse named Tessa who I will always remember as being very helpful to me and my family. So, last week I went to Gillette on a day Tessa was working (her job is slightly different than it used to be as a nurse). Scott Wasserman and a camera guy from Fox 9 met me there to shoot some video of Tessa working and also the two of us talking. Then they met me back at my house to videotape some things that I do now that I've learned from Tessa and/or Gillette.

I was at Gillette Children's Hospital for six months after my accident. I learned a lot, especially how to be independent and cope with my injury. I also learned how to paint with my mouth when I was there, which is something that I love to do now. There were many nurses and staff members that helped me throughout my recovery period, and I owe a lot to those who have taken care of me throughout these past 10 years. If it weren't for the great care that I've received and also received now, I wouldn't be where I am at today.


Friday, July 27, 2012

Bear with Me…

The marketing class I'm in the summer has been tying me down this past month and isn't going to be any easier in the last week. I have a 12 page paper due August 3 and am planning on spending every waking moment I get to complete it. After that I get a month break before fall semester begins. During that month I plan on writing many blog posts, sitting in the sun, staring at the television screen and reading for pleasure (not for school).

So, I ask you to bear with me until then. Thanks for being patient. By the way, I received a letter of acceptance to Metro State University for spring semester 2013. More about that in the next post.


Tuesday, July 17, 2012

A Trip to the ER

Last Thursday as I was getting turned in bed my left shoulder dislocated. Despite having limited feeling it hurt a lot. I knew right away something had happened, but I went ahead and got up in my wheelchair. By the time I sat down, it had popped back in. Then, Friday when I was turning it happened again. I thought it would go in when I got up like it did the day before but it didn't. I ended up going into the emergency room at Methodist hospital.

When I got there, they took me into a room right away. The doctor came and tried to gradually ease it into place but it wouldn't go and was extremely painful. They decided to give me a narcotic so I would feel it as much. Once those kicked in and she was able to try again; it took a while but eventually she got it. They took an x-ray afterwards to be sure.
However, I wasn't done in the ER yet. Because of the narcotic they gave me my blood pressure dropped extremely low. They decided to start an IV and get some fluids in me but had trouble finding a good vein but eventually after four tries they finally ended up getting it. (I have the bruises to show for it!) Even though the fluids were going my blood pressure still wouldn't rise and there were about four times where I became unresponsive. Not to mention I was a little out of it due to the drug.

After a couple of hours, I was finally in the safe zone to go home. It was a long day in the ER. My shoulder was very sore over the weekend but it's feeling a lot better today. I'm not quite sure how it came out of the socket. What's interesting was no one had their hand on my shoulder at the time. I think as I rolled onto my right shoulder, my left arm fell forward a little bit. It was just enough each day for it to dislocate.

Because of my injury and the inability to move, it's common for my muscle mass to start wearing down over time. I'm finding that my neck and shoulders are really tight and tense. I'm working in physical therapy to get my muscles relaxed and my arms and legs moving. Although, stress can easily cause tight muscles in anyone and that could be part of it. For now, I am focused on safe transfers and lifting; crossing my fingers for no injuries.


Friday, July 6, 2012

Hot and Humid

I finished my first online summer class, Cultural Anthropology last Friday. I ended up with a B in the class which is pretty good considering how much work and how hard it was. Summer classes at Normandale are only five weeks long compared to 16 weeks in a regular semester. On Monday I started my Principles of Marketing class for the second summer session. This one's only five weeks as well, and is proving to be just as difficult. I'll definitely be busy the rest of the summer. I can tell I've been spending more days inside than last summer because I'm not as tan as I was at this point.

On Wednesday, July 4 my boyfriend, Blake, came over to hang out. We were going to go see fireworks but it was way too hot outside. It reached 100°F and has been around that temperature the last few days. Instead we stayed in the air-conditioning and watched a movie. It isn't supposed to be that hot tomorrow, so maybe we'll go out somewhere. Since he lives at least 45 min. away we only see each other about once a week (usually Saturdays); bonus this week though because he came over for the fourth! August 1 he's going to be moving to an apartment in St. Paul which is only about 25 min. away. That's a big difference on gas usage, especially when he'll be able to take the bus or Metro Mobility if need be. He usually comes over for about 8 to 10 hours at a time because of the drive, which is great since it's hard when we're apart.

Now it's time for me to go back to studying for my quiz. Good luck to me!


Thursday, June 28, 2012

I've Learned…

I love this quote by Margaret Boyd. It's all the things that if I haven't already I hope to learn in my lifetime. Enjoy!
"I've learned that no matter what happens, or how bad it seems today, life does go on, and it will be better tomorrow. I've learned that you can tell a lot about a person by the way he/she handles these three things: a rainy day, lost luggage, and tangled Christmas tree lights. I've learned that regardless of your relationship with your parents, you'll miss them when they're gone from your life. I've learned that making a "living" is not the same thing as "making a life." I've learned that life sometimes gives you a second chance.

"I've learned that you shouldn't go through life with a catcher's mitt on both hands; you need to be able to throw some things back. I've learned that when ever I decide something with an open heart, I usually make the right decision. I've learned that even when I have pains, I don't have to be one. I've learned that every day you should reach out and touch someone. People love a warm hug, or just a friendly pat on the back. I've learned that I still have a lot to learn. I've learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.

"Pick her up and pretend you're going to throw her in the pool, she'll scream and fight but secretly she'll love it. Hold her hand while you talk. Hold her hand while you drive. Just hold her hand. Look into her eyes while you talk to her. Protect her. Tell her stupid jokes. Tickle her, even when she says stop. Slow dance with her. Let her fall asleep in your arms. Get her mad then kiss her. Tease her. Let her tease you back. Stay up with her when she's sick. Kiss her forehead. Let her wear your clothes. Kiss her in the rain. Just kiss her. And when you love her just tell her.

"As we grow up, we learn that even the one person that wasn't supposed to let you down, probably will. You will have your heart broken probably more than once, and it's harder every time. You'll break hearts too, so remember how it felt when yours was broken. You'll fight with your best friend and you might even fall in love. You'll blame a new love for things an old one did. You'll cry because time is passing so fast. So take too many pictures, laugh too hard, and love like you've never been hurt because every minute you spend mad or upset is a minute of happiness you'll never get back.

Those who have hope, have everything."
-Margaret Boyd

Tuesday, June 26, 2012

Dreams and Gifts

1) List your dreams

My dream is to be an advocate for others.  I would like to graduate college with hopes of becoming a motivational speaker and also work in public relations. I would like to speak anywhere that is needed to share my inspirational story and teach lessons.

2) List your gifts

Artistic, natural speaker and motivator, ability to inspire and help others, sense of humor, writer

3) How do I want to help my community/society?

I would like to be an advocate for people with disabilities. I also want to volunteer my time to help others in need.

4) What are societies' problems I want to help solve?

I believe that society labels people with disabilities and looks at them in a different way. I would like to change this problem and make it so that people with disabilities are seen for the abilities that they have and not their disability.

5) Your favorite values you wish to be known for:

*served or helped those who were in need
*impressed people with my going the 2nd mile, in meeting their needs
*was always a good listener
*was always good at carrying out orders, or bringing projects to a successful conclusion
*mastered some technique or field
*did something that everyone said couldn't be done
*did something that no one had ever done before
*excelled and was the best at whatever I did
*fixed something that was broken
*made something work
*improved something, made it better, perfected it
*influenced people and gained tremendous response from them
*had an impact and caused change
*did work which brought more information/truth to the world
*was a good decision maker
*was me


Friday, June 22, 2012

Journal History I

On November 1, 2002 I was in a car accident. A few days later, my family started a CaringBridge site to keep everybody updated on what was going on with me. It's very interesting for me to read back through the Journal history since I don't remember much from directly after my accident. I'm creating a new series called Journal history in which I will continue to post most of the entries for all to read. Here are the Journal entries from November 5 through November 17.

Tuesday, November 05, 2002 at 08:14 AM (CST)

Jenni has had some progress. Sunday (11/3) she was placed in a Halo brace to keep her neck immobilized. Monday (11/4) she had her breathing tube removed from her mouth and a breathing tube placed in her trachea. We welcomed this operation to provide more comfort for her throat and now when she mouths her words to us it is much more comfortable.

Saturday, November 9th, 2002 6:45 PM

Although Jenni had a quiet night last night, she did not sleep well. Today she wanted to rest alot and we agreed she should. The nursing staff is the best, and Jen is comfortable with all of them. They are keeping her busy with tests and different things that will help her recover faster. The staff stressed the need for "quiet time" for Jen, we realize how important that is. We want her to recover just as much as everyone, so we are letting her rest as much as she needs. The family thanks everyone for the continued support, and we will let you know when she is able to have visitors more often. Thank you and God Bless.

Sunday, November 10th, 9:45 PM

There was not much change in Jenni' condition today, but we know with each passing moment her body is healing. Jenni is so strong! Kevin, Lori, Cindy and Kristen would like to say THANK YOU to the enormous network of family and friends who have come together in support. You have given us the strength and courage to cope. Jenni also knows you there and she is comforted. Coach Cos says; "Together" and we feel together. You are amazing people. God Bless you all.

Tuesday, November 12, 2002 at 08:58 AM (CST)

Jenni had a good night last night. Nurse Marylou wheeled in a TV/VCR and we listened to a movie until the Sandman came. He stayed with Jenni most of night, and this morning she feels rested. Today the Staff is working on elevating the bed more often, and for longer periods of time. We are continuing to hope and pray for Jenni and know you are too. God Bless.

Tuesday, November 12, 2002 at 07:20 PM (CST)

A pretty good day today for Jenni. She had a visit from the Occupational Therapy department. They had her sitting upright in bed for about 5 minutes. It was a little uncomfortable, but a necessary stop on the road to recovery. Wednesday she gets to try a reclining chair. She enjoyed the new view of her surroundings. She also got some personal dental work from Cindy who filed a sharp point off her front tooth. It sure feels better, thanks Cindy. Jenni did ask her cousin Kari to find her a poster of "EMINEM"-(with his shirt off), to put on the ceiling for when she is lying on her back. We'll clear that one with the Staff. She sends her love and thanks to all of you. God Bless.

Wednesday, November 13, 2002 at 11:43 PM (CST)

Jenni writes tonight's journal entry:

"Dear friends and family of mine,

I love you all so much and I am so thankful to be in your prayers.
God bless you all. Thanks for writing to me and keeping my hopes up.
I love you all so much and hope to talk to and see you soon".

With love,

Thursday, November 14, 2002 at 09:44 PM (CST)

Today was a very busy day for Jenni. This afternoon she went to surgery to have an artery in her neck "sealed" This was done to prevent any clots from releasing and moving to her brain. We feel much more relieved now.

Jenni received a new trachea tube today however it turned out to be "not quite right". Another should be delivered on Monday. She is being very patient through all this, a definite sign of her strength and courage.

Saturday, November 16, 2002 at 1:58 AM (CST)

Good morning. Jenni had another milestone today. She got 10 very proud minutes in a chair! She was not quite upright, but good enough that she was finally able to see the rest of room she has been in the past two weeks. She was so excited. (Aunt Sandy took advantage of the empty bed to surgically tape an "EMINEM" poster to the ceiling. No more boring ceiling tile dots to look at.) We then had a mini photo shoot, taking pictures of Jenni with everyone there; Dad, Aunt Sandy, Aunt Julie, and nurses/new friends. What a ham! Late last night Cindy pampered Jenni with a scalp massage and hair brushing, while Dad did his best at a facial. Jenni loved it so much she didn't want us to stop. Later, a Respiratory Tech named "Ta" stopped and French braided her hair. (She actually bailed us out because we weren't sure what country her braid would've been from had Cindy and Dad done it.)We pretend we are at the "Ped's ICU Resort and Spa", a relaxing place Jenni can go to and take her mind off other things.

We may be moving Jen next week to Gillette Children's Hospital in St. Paul for rehabilitation. We visited the facility on Friday and were very impressed. Jenni has the "can hardly waits" to go there. We will keep you informed. Thank you for your continued support and prayers. God Bless.

Sunday, November 17, 2002 at 09:36 AM (CST)

We would like to devote this journal entry to educate you about Jenni's injury and present physical condition. Jenni suffered a compression injury to her neck, specifically her spinal cord in her cervical vertibrae,(C1-C2),at the base of her neck. As a result of this injury, she does not have voluntary control of any muscles below this point, including her diaphram. She is on a ventilator to provide her breathing. Above the point of injury, she is completely functional with the exception of her voice. The ventilator tube enters her trachea below her vocal cords.

Eventually she will learn to pass air across her vocal cords allowing her to speak with sound.
At this time there is nothing surgically or medically available to repair spinal cord damage. None, partial or full regeneration of the nerve cells may happen, but only time will tell. You can learn more about her type of injury by visiting www.spinalcord.org. A link is provided below.
We hope to move Jenni from HCMC Peds ICU to Gillette Children's Hospital in St Paul for rehabilitation as soon as we get the ok.

Thank you again for all your support through prayers and thoughts. God bless you all.

Tuesday, June 19, 2012

Working on Homework

I've been extremely busy with my online cultural anthropology class this past week, hence the reason for the lack of blog posts. I love creative writing and especially writing posts for all of you to read. However I find it difficult to write them at this point because I feel guilty when I'm obligated to write things like discussion posts and papers for my class. Sorry to say this one ends on the 29th and July 2 I'll be starting an online marketing class. That means the same thing might happen depending on my workload. I guess that's part of what goes along with college!

For this class I have two chapters, seven discussion posts, a two-page paper, and a 100 point quiz that I have to do for homework each week. Right now I'm in the middle of working on my fourth paper in week four of my class (there's five weeks). For the paper, I have to pretend like I was just hired by NASA to create an extraterrestrial community in which I try to avoid problems and conflicts that exist in a modern society. I have to say I wasn't excited about this assignment at first, but I just typed out 300 words in the last half-hour after doing a little research. (With the help of Dragon NaturallySpeaking speech recognition software I'm able to type a lot of words by voice if I don't stop very much to think lol).

There's something about this paper that's intriguing me now that wasn't before; it's that I'm able to create a society/community where I have the ability to avoid all problems that exist in the world today. Now that's what I call the coolest idea ever. I'm all for being able to eliminate crime and murder and implement good political, educational, and economic systems. I also have to share how I would maintain order and settle conflicts along with what main values I would build into my community. It's turning out to be interesting figuring out what's wrong with our society now and turning it into something right. Of course, I wouldn't have to necessarily create the perfect community, but why not?


Monday, June 11, 2012

Creating Artwork

One of my favorite activities to do is paint. I use watercolor and special paper to create all sorts of images and sceneries. In order to do so, someone puts the end of a paintbrush in my mouth with the other end full of the color I want; then they hold the paper for me. I've been using this technique since my accident and it's proved to be the best method.

It's the most fun and relaxing thing I do. It gives me great pleasure to create paintings that others can enjoy. I get asked all the time if I sell my paintings by people interested in buying them. The reason I haven't decided to yet is because I tend to get attached so it's hard to let go of the originals, especially if they're really good. I thought about making prints and then selling them, but haven't gotten around to it. Someday I'll get up the courage to sell some, just not yet.

I had four watercolor classes over the past five weeks that I took at the Edina Art Center. I took the same class there with the same teacher a couple of years ago and loved it! The best part was learning new techniques for my paintings. The class this year was 2 1/2 hours long. It's hard on my neck to paint for a long period of time so I have to take frequent breaks. There's another one just like it possibly starting this Wednesday with six classes. I won't be able to make it the first class because of appointments but hopefully I can sign up for it and attend the remaining five.

In the first watercolor class, she showed us how to paint a fish. Although I tried, it was difficult for me to do because of all of the details. Throughout the second class I worked on a painting of some flowers in a vase. I didn't know how to go about starting something like this since I hadn't done it before. The art teacher showed me a picture to go off of and then taught me how to create a vase. I wet the whole paper first and then created the background with yellow and a tiny bit of pink and blue. When the paper dried some, I put in some darker green to show the leaves. Next, I painted the vase with a purple and made the right side of it a little bit darker to show some shadow. That's all I completed that day.

In the third class, the teacher showed us how to paint a flower and then put a background in. Whenever I paint scenery I always start with the background first so this technique was very helpful to me. I practiced painting a flower; when it was dry I wet the white of the paper and touched in some color creating a background. Although it was just on a scratch piece of watercolor paper, sometimes even when I'm just practicing the paintings turn out really well and end up becoming
finished pieces.

During the fourth class I finished my flower painting. The teacher told me that it looked really good the way it was but I could add a little more color. So I added some brighter yellow, pink, and a tiny bit of blue. I think it turned out really nice and is one of my better paintings. I'm definitely going to try this technique again with flowers and a vase. I could possibly turn this painting into greeting cards or just make prints of it but I haven't decided yet.

Let me know what you think!


Sunday, June 3, 2012

Finding Time

I can't believe that it's June already. This year is going by so fast! I started my online cultural anthropology class this last week. It's extremely demanding of my time and there's a lot of homework; because it's during the summer, the class is essentially a 16 week class condensed into 5 weeks. Each week I have two chapters to read (about 50 pages), seven discussion posts, a 1-2 page paper, and a 20 question quiz worth 100 points. I've been able to get most of it done these past few days however each week will be different depending on other things I've committed to. Over the next four days I have meetings and appointments that will require a lot of my time so I'm a little worried about how much homework I'll be able to get done.

My week coming so far…
Monday-Botox appointment

Tuesday-Physical therapy, Art Class, acupuncture

Wednesday-Ms. wheelchair Minnesota board meeting, physical therapy
Thursday-Manual therapy, Psychotherapist appointment

Friday-Physical therapy
This doesn't seem like too much looking at it spread out, but I haven't included public transportation drive time. That can sometimes take longer than appointments depending on where I have to go and different pickups of people. Also, I often have to wait longer than the original pickup times; certain companies are better at being on time than others but most of the time it doesn't matter… I'm always waiting. The worst thing is when we have to pick up and drop off other people; being in a vehicle driving around the city when I know I could be spending that time getting other things done such as homework isn't the most ideal situation. It wouldn't be so bad if it was always straight shots.

Anyways, back to my homework. I have two discussion posts to do and a paper to finish up before 10 PM tonight. Wish me luck in all my endeavors for the summer. Blog posts might be a little scarce as homework is my top priority!
Feel free to make suggestions or submit comments and questions-I'm always looking for ideas on blog posts to write.



"There's never enough time to do all the nothing you want."
-Bill Watterson

Monday, May 28, 2012

One with Nature

Memorial Day is a federal holiday that is a day of remembrance for those who have died in our nation's service. It's also a big weekend where people take time to spend with family and friends, doing a lot of outdoor activities. Also, going "up north" (anywhere north of the Twin Cities) as we call it in Minnesota is common.

Today I went for a roll in Wayzata with my aunt, Sandy and sister, Kristen. First, we stopped at Starbucks and got drinks and then headed down a path around part of Lake Minnetonka. It was a beautiful day and there were lots of people boating, fishing, swimming biking etc. We were out for a couple of hours just people watching and enjoying the sunshine.

I love going outside and prefer to be in the sun. Some days I'll sit directly in the sun for hours. Although, my skin is extremely sensitive so I have to be very careful and wear sunscreen all the time. My face and arms will get really red even if I've only been outside for 10 min. in the sun. I think a lot of it has to do with the medications I'm on; they can cause my skin to be hypersensitive and I burn easily. One thing that's interesting is that most people in my situation don't sweat below their injury, but I do. My back and feet do the most but those are the places that I also wear braces. I'm probably able to sweat because my injury is incomplete.

I've written blog posts before mentioning my backyard and the beautiful forest that surrounds my house. We live on an acre, and our property backs up to a forest filled park with a nature trail. That guarantees that no one will ever build behind or around us. I enjoy watching the animals and just listening to nature; it's so peaceful and relaxing. It doesn't matter what season it is, there's always something to see and hear.

I also love all of the plants and flowers. I like to have people take pictures of them and the animals. My mom plants a lot of things each spring; that also includes a garden with all sorts of vegetables and some fruit. I've posted some good photos of my yard, house, plants and animals that I've taken over the years.

Female turkey in the tree

Raccoon taking a snooze in broad daylight
This is my favorite picture of a tree frog on a Black-Eyed Susan in our front yard
Dear in the woods
Monarch butterfly that I released
Two pairs of ducks swimming in the marsh
Goose reflection shot
Two woodchucks chowing down on some corn
My backyard
Fire pit and woods in my backyard
Flower shot
Flower shot II

Before my accident I loved going fishing, hiking and canoeing. Basically any outdoor activity that involved nature I was doing. I went to a YMCA camp in Amery, Wisconsin for seven summers straight and was going to be a counselor there. I've gone back to the camp to visit a couple of times since.


Monday, May 21, 2012

Why I Blog

I've been thinking lately about reasons why I blog. First, it's important to know that everything I say is true to me and my feelings. My goal is to share my story, giving others a glimpse into the life of a quadriplegic. I want to educate others about people with disabilities and tell those looking from the outside that there is nothing to fear or be afraid about. No question is a dumb question. In fact, I encourage people to ask and explore their thoughts with me. All of these are reasons why I started to blog about my life.

Before reading a friend's blog, I had no idea what one was. I was intrigued by the number of readers and how many people commented on the post. I was also interested in finding out how to go about setting one up. I've always loved writing, especially about myself, so I figured blogging wouldn't be too difficult. After researching a little bit about blogs in general, I started creating mine in September 2008.

After figuring out a name and design, I made it live by October. I didn't know what to expect and hadn't a clue the responses I would get. Pretty soon the number of visitors started rising and I realized I was reaching people across the world. I never imagined I would be receiving comments and e-mails from others in similar situations just looking for support and someone to relate to. While starting to realize the impact I was making, I became addicted to blogging. I began opening up more about my life and writing in more detail.

I knew quickly how important and special this blog was becoming; this is what I stated in a post a couple weeks after starting it up:

"I love this blog! It feels good to be able to express myself while others become inspired by me. It is so much fun to post my writings and opinions. The first month was going to be a trial to see how I liked it. Obviously, this blog isn't going anywhere soon. I'm excited to say that I am going to keep this running as long as possible."

Keep the comments and questions coming!


"All of us, at certain moments of our lives, need to take advice and to receive help from other people."
-Alexis Car

Wednesday, May 16, 2012

A Look into School and a Job

It feels so good to be done with spring semester. My first summer class starts at the end of this month and I'm actually looking forward to it. Even though I like being stress-free and not having to worry about homework deadlines, I do like to stay busy. School has always been one thing that's constant and consistent. That's probably what this keeps me motivated to keep going, along with the feeling I'll get when I finally have a degree and will be looking for a job. I know I've talked a lot about school lately but I'm excited about the progress and accomplishments I've made.
At the time of the accident, I was two months into my sophomore year of high school. While in the hospital, I finished up two classes that I was taking. I tried to go back to school after I got home towards the end of my sophomore year but decided I wasn't ready. I went back my junior year and ended up graduating on time with my class in June 2005; that was something I was shooting for, but didn't know if it would happen. I signed up for one class at Normandale fall 2005, but after two weeks of attending I withdrew from the class. I've officially been going there since fall 2006 just taking one or two classes at the time (which is all that I can usually handle in my busy life).
Throughout the past seven years, my sole experience with working has been one job that lasted through two summers. It was with Intermediate District 287 doing data entry, spreadsheets and art design. All other experience I have has been volunteering; this includes public speaking, working with children, Ms. Wheelchair Minnesota 2011, advocating etc. I would love to do an internship somewhere to get even more experience within the communications field. However, I'm definitely eager to find a job that pays.
Right now I'm working on revising my resume so I can start distribution whenever needed. I'm also going to get new business cards to give out. I think the best thing one can do is market themselves and find contacts whenever possible. Even though I'm not planning on working quite yet, it will be good to create relationships with others and get my name out. That way when I do start looking for a job I'll know exactly what I want and who I should connect with. I'm eager to get into the work field but I know I have to finish getting my degree's first.
I've often thought about getting a part-time job so I could get paid versus all of the volunteering I do, but I'm not sure what type of position would suit me right now. Plus, it may be difficult for me to juggle classes and a career at the same time. I'm already very busy so adding 20 hours a week for work would probably be very difficult. Maybe I could start out with a few hours a week and work my way up; I'll just have to keep my options open.

For now, I'm enjoying my time relaxing and sitting in the sun with no worries or stress; the only work I'm doing now is on my tan!


Sunday, May 13, 2012

Happy Mother's Day!

Amazing Mother

Brought life into this world

Cherished every given moment

Sweet memories of bliss

Generosity and kindness throughout

Gave love to others

Caretaker to all around

Dedication within the family

Sacrifices made for children

Amazing mother of mine

-Jenni Taylor

Sunday, May 6, 2012

There's an End in Sight

Spring semester at Normandale ends after next week. I'm glad I will be done with my Intro to Short Stories class soon. I only need 10 more credits (three classes) and then I'll have enough to graduate with my Associates in Arts with an Emphasis in Communications at the end of fall semester.

I signed up for summer classes a few weeks ago. There are two summer sessions, each one month long. The first session goes from May 29-June 29 and I'll be taking Cultural Anthropology which meets one of my transfer goals. That's the only class that seemed somewhat interesting compared to the other history type classes. Then, I'll be taking Intro to Marketing for the second session which goes from July 2-August 3. This will be an elective although I'm not quite sure how much I'll like it; I hope it's not boring. I thought it could be of some use if I want to be able to market myself in the future.

Registration opened last week for fall classes already so I got that out of the way as well. I signed up for Geology which meets my science with a lab goal; that will meet at Normandale Monday, Tuesday and Thursday. I haven't taken a class yet where I've gone three days a week so I'm interested to see how I'll hold up. I'm sure it won't be too bad. Even though the three classes I signed up for are enough to graduate, I did add Public Relations online also in the fall.

I can't believe my graduation from Normandale is this year! I've been attending since fall of 2006, just taking one or two classes at a time. This will be a huge accomplishment, alongside of graduating high school on time with my class. My plans are to go on with school to get my bachelors in Personal Communications. I just recently figured that out; before I didn't know what I was going to do afterwards. Metro State in Minneapolis has a good program where I can choose which track I want, and I'm going to do public relations. I've looked into a lot of jobs in this field and it's definitely something I have taken interest in.

My general interest in PR came just in the last year, since becoming Ms. Wheelchair Minnesota 2011. During my reign, I had to do all my own researching, publicizing and contacting news coverage. I was able to get my story published in three newspapers and one online paper. I also wrote (and read others) blog posts in different areas about everything I did. Besides attending events and speaking, being able to promote myself to others was one of my favorite things I did.


Monday, April 30, 2012


Listen to my podcast on the BeautyAbility blog! Tiffany interviews me about my life and how I'm dealing with my disability. Click on the link below and then click play…



Sunday, April 29, 2012

Phone Calls and Speaking

The other day I was making a doctor's appointment. This is how the conversation ended:

Receptionist: "Is everything okay?"
Me: "Yes, why?"
Receptionist: "Oh, because you sound a little out of breath!"
Me: "I'm on a vent…"
Receptionist: "That explains it then! Anything else I can do for you?"
Me: "No that will be all. Thanks."
I couldn't stop laughing when I hung up. It actually doesn't bother me too much. I've always thought about if other people can tell I'm on a vent when we're on the phone. I make all my own phone calls to doctors' offices, transportation services, supply companies, medical equipment suppliers etc. I guess unless they've met me or are provided detailed info on me, they probably don't know that I'm a quadriplegic paralyzed from the neck down and on a ventilator. One of the things with talking to people on the phone is that they can't judge based on appearance because it's just my voice.
Unlike some people in my situation, my voice is very clear and loud as opposed to soft spoken and broken up. Occasionally I may pause for a breath but most of the time I can hold enough air in to talk between them. The sound of my voice does get a little softer at that point and then louder when I receive a breath, but overall you can still hear me. I tend to say uh or um a lot when talking because if I'm waiting for breath I don't want the other person to think that I'm not on the phone anymore. It's also the same when I'm in conversation with someone or public speaking. The story must go on, so I guess that's my way of keeping it going with pauses. I was always told to avoid those two words when talking, especially giving speeches. I try not to say anything and just let the break in my sentence happen but it's hard when I've been doing it for so long. That's something I plan to work on.
In the meantime, I'm still going to continue to speak because that's my means of communication. Whether it's on the phone, to someone specific or a group of people, talking is what I love to do. My voice is especially important for giving directions. As many of you may know, I have 24/7 nursing in which they help me with my every need. I direct all my own cares and tell whoever is helping me my preferences on how I like things done.
So anyway, now that I've created this blog post by voice using speech recognition software I will say "that's all folks" into the microphone.


Wednesday, April 25, 2012

Speaking at Hopkins High School

Yesterday I spoke to a class called Peer Insights at Hopkins High School. I hadn't been there since my graduation in 2005. It was weird going back and seeing all the changes that had been made. Memories came flooding back to me as I rolled down the halls to the classroom. I took the same class when I was a junior there and it was by far my favorite. It is designed to integrate people with disabilities and their peers; it is a great concept that gives insight to all types of situations. When I took it, we went on field trips, had guest speakers and did a lot of fun activities.

Upon approaching the class, I was welcomed with open arms as everyone was eager to hear me speak. I shared my story and talked about the challenges I've been through and the obstacles I have overcome. I also spoke about how I continue to stay positive despite my situation and what I'm doing now. They had tons of questions and I showed them my vent and how I move my wheelchair. Then I asked them to share their stories of any challenges or things in their life that they have gone through. I was delighted when hands went up and it was interesting to hear their stories.

Being at the high school was also somewhat of an emotional experience for me. At the age of 16, I was two months into my sophomore year there when my accident happened. After spending six months in the hospital and adjusting to life in a wheelchair with a disability, I went back my junior year. The long days were tough and learning how to be independent while others were assisting me with my every need was weighing on me. My positivity and determination over shined the struggles and I was able to make it through. I graduated on time with my class on June 7, 2005. When I went on the stage to collect my diploma I received a standing ovation, causing emotions to pour out as I sat facing the crowd on their feet. I'm proud of everything I've accomplished so far in my life and look forward to the many things to come.

I encourage those of you reading this to take a step back and acknowledge the challenges, tough times, obstacles, or other things in your life that you have or are facing. Think about the ways you dealt or coped to get through. If you are experiencing situations now in which you are searching for ways to overcome think positive, knowing that there are others out there for support and help.