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.

Jenni

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.

Jenni

A Creed to Live by

Don't undermine your worth by comparing

yourself with others.

It is because we are different that each of us is special.

Don't set your goals by what other people

deem important.

Only you know what is best for you.

Don't take for granted the things closest to your heart.

Cling to them as you would your life, for without them

life is meaningless.

Don't let your life slip through your fingers

by living in the past or for the future.

By living your life one day at a time,

you live all the days of your life.

Don't give up when you still have something to give.

Nothing is really over until the moment you stop trying.

Don't stew be afraid to admit that you are less than perfect.

It is this fragile thread that binds us to each other.

Don't be afraid to encounter risks.

It is by taking chances that we learn how to be brave.

Don't shut love out of your life by saying it's impossible to find.

The quickest way to receive love is to give love.

The fastest way to lose love is to hold it too tightly;

and the best way to keep love is to give it wings.

Don't dismiss your dreams.

To be without dreams is to be without hope;

to be without hope is to be without purpose.

Don't run through life so fast that you forget

not only where you've been, but also where you're going.

Life is not a race, but a journey to be savored

each step of the way.

Nancye Sims

Ms. Wheelchair Minnesota 2012 Pageant

At the Ms. Wheelchair Minnesota 2012 pageant after a year of hard work and advocacy as Ms. Wheelchair Minnesota 2011!

Me giving my farewell speech at the Ms. Wheelchair Minnesota 2012 pageant

Monday, April 2 was the Ms. Wheelchair Minnesota 2012 pageant. There were five amazing contestants and each of them had a platform that they gave a speech on. The contestants came in early for hair and makeup, had their 15 min. interviews, and then after their platform speech they were asked one final question before the winner was announced. I gave a farewell speech and showed a slide show that comprised pictures of things I did throughout the past year.

The contestants

This year's pageant was a little different compared to last year and they incorporated a few new things. Since Ms. Wheelchair Minnesota is a nonprofit organization, they do fundraising to help get the title holder to nationals and events throughout her reign. At the 2012 pageant they had a dinner in which people could purchase tickets for, a silent auction, and a raffle; companies could also sponsor tables

My year as Ms. Wheelchair Minnesota 2011 was filled with events, speeches and some great opportunities that I wouldn't have done otherwise had I not won. I took my first plane ride since my accident to Grand Rapids, Michigan for the national competition where I received forth runner-up.

I got the chance to inspire and motivate others by speaking to all ages and attending events with my crown and sash. I've also changed a lot (in a good way) over the past 12 months. My wardrobe went from sweatshirts and sweatpants to jeans, sweaters, and business attire. Since nationals in August, I figured out that I could stay up in my wheelchair past 5 PM. Now I don't get back into bed until at least 7:30 PM if not later. This makes my life more enriched and flexible because I'm not bound to a certain routine anymore.

It was a little sad knowing that my year was up, but I was pleased to pass the title over and give someone else a chance to experience the once-in-a-lifetime opportunity I was able to. Like I said before, I enjoyed every minute and the end was bittersweet. I will never forget the things I did and the people I touched throughout my reign.



The first runner-up went to Paula Gleisberg. Her speech was great and I'm very proud of her! I've known Paula since high school and we've been friends ever since. Ms. Wheelchair Minnesota 2012 is Jen Onsum, who is an amazing young woman and I know will do our state proud! Her platform is "Activity is enriching."

Paula Gleisberg, first runner-up

Jen Onsum, Ms. Wheelchair Minnesota 2012

From her biography-"Jen Onsum is an active and determined 31-year-old from Brooklyn Park. Living with Spinal Muscular Atrophy, Jen hasn’t let her disability stop her from her achieving whatever her mind is set on achieving. She is a graduate of the University of St. Thomas, where she earned a Bachelor’s in Journalism / Public Relations. After working in PR for a few years, Jen decided to follow her true passion of healthcare and is completing a degree in Health Information through M State. Jen enjoys volunteering with the Muscular Dystrophy Association, traveling, dancing and playing PowerHockey."

I've posted some pictures of the event. Thank you to everyone who supported and helped me throughout this journey… I truly appreciate it!

Jenni

Drill Away

Last Wednesday I had to have a root canal on one of my molars. I figured out that I needed to go to the dentist when I developed a bump in my gum right above that tooth and it hurt when I touched it. It took a while and a lot of searching to find an Endodontist's office that was accessible and that could do it with me in my wheelchair. When I got there they numbed me up really well and then started drilling away! I usually don't mind the dentist so as long as there's no pain I'm okay. It went well and then yesterday I went back to my regular dentist and he put a temporary crown over that tooth until the new one gets made.

This was my first root canal and crown that I've had. The dentist drilled about half my tooth away before making a mold to fit the crown. The temporary is really smooth and feels weird; I have to be careful with flossing and different foods so it doesn't fall out. After he was done, I went to a different room and the dental hygienist started cleaning my teeth. I must've felt really comfortable because I actually fell asleep while she was scraping my teeth and poking at my gums. When I woke up she was almost done and she said that I kept my mouth open the whole time.

I have to go back in a couple weeks to get the porcelain crown put on. I don't mind getting my teeth cleaned but hopefully I won't have to have any more crowns in the future.

Jenni

Asking for a Bite…

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

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

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

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

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

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

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

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

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

Jenni

Busy, busy, busy!

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

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

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

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

Jenni

My Body: Spasms and Pain

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

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

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

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

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

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

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

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

Jenni

The Don't Quit Poem

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


The Don't Quit Poem

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

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

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

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

I also found this really cool video using the poem.



Jenni

A Well Deserved Break

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

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

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

Jenni

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