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.

Jenni

 

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

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?

Jenni

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.

Jenni

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!

Jenni

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. :-)

Jenni

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.

Jenni

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

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.

Jenni

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.

Jenni

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.

Jenni

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!

Jenni