In Recovery Mode

Hello everybody,
I just wanted to let everyone know that Wednesday morning at 2 AM I had a seizure.  My nurse called 911 and they took me to the hospital.  I was in the ICU since Monday evening and have been pretty much out of it since.  I still have a lot of memory loss, and won't be able to update probably until next week.  Thank you for your patience, thoughts and prayers!

Finishing My Redesign

I can’t believe that it’s February already!  January went by so fast and I have made a lot of changes.  Unfortunately, the posts aren’t really coming like I hoped they would.  It’s like every day I go on the computer with the intention of blogging but end up getting distracted by other things.  It’s a habit that definitely needs breaking.  The web does an amazing job at sucking you into a world of news stories, interesting facts, videos, articles and of course the ever growing social media.

The low temperatures don’t make it any easier.  Here in Minnesota it’s been extremely cold and snowy.  I spent most of January indoors which was hard on me since I like to be out so much.  I’d like to find more places to get out and do things at.  Whether it’s volunteering, shopping or even finding a side job, I’m interested in getting involved with more things.  Hopefully things will start opening up… We still have our snowiest months to come!  Despite the weather it’s given me some time to finish my redesign projects.

My blog is pretty much put together and redesigned! I just have a few tabs to finish and I’m in the process of doing that.  It's taking a lot of time but it will be well worth it.  Anyone have any comments or suggestions?  So far I’ve gotten positive reviews from people and I love the new design.

My room is just about back together.  I changed the color from light blue to sail cloth (more of a light taupe color); it’s a big difference and definitely more grown-up.  I also hung all new pictures but still have a few walls to go.  I also ordered 2 recliners to put in there instead of my blue couch.  That way I can sit in one of the recliners to get a break from my wheelchair and bed.  I’ll be posting pictures in about a month when everything comes together, hopefully sooner than later.

Today I’m going to be watching the Super Bowl.  I don’t usually watch a lot of football, although I’ll watch the Minnesota Vikings here and there (mostly when they’re doing well which isn’t too often these days).  The Super Bowl is packed with good teams, lots of noise, and great commercials.  Sometimes I just want for the commercials which is rare because most of the time when I’m watching TV I try to avoid them by fast forwarding!

Redesigning!

I’m currently going through a bunch of changes in my life.  This also includes a well needed update on my blog.  You will soon see my blog transform before your eyes!  Over time, some things may need to be edited or changed, but the fresh new look is going to be awesome!  I can’t wait until everybody can see what it looks like!  Feel free to comment or ask questions about the change.  I’m also open to suggestions if you have any.

Along with my blog changing, I decided to paint my room and redecorate as well.  It’s been painted and now I just have to put everything together.  I’m also going to buy new things to put in my room very soon.  I will definitely post pictures of the new color and then eventually of my whole room.

Jenni

Wheels in Winter

Although I love Minnesota, winter is hard on me (and my wheels).  With cold temperatures below freezing and sometimes even below zero, along with the piles of snow it’s difficult for me to get around. Sometimes I develop seasonal depression because I’m stuck indoors.  When that happens, I’m never in the mood to do anything or be productive.  It’s very unfortunate because I love getting outside (especially to take my dog for a walk) and go out in the community.  I’m looking forward to spring when I can get outside more.

Last week was especially hard.  The temperatures were very extreme; schools, events, activities etc. were even governed close last Monday and Tuesday because of the cold.  I believe the high was below -20°F and the wind chill factor (how it felt) was at least -40°F.  The news commented saying five minutes outside and someone could start to freeze!  Even Brody didn’t want to go outside.

The weather here is also very unpredictable.  The other day felt like a heat wave with the high being 40°F.  Other states probably might consider that cold but not us here!  I would definitely take Brody for a walk if there wasn’t so much slush in the streets.  In fact, I did when it first snowed and everything was fresh.  Last night it snowed a few inches and we’re due to get more today.

 

Me and Brody about a month ago.  It was still warm enough to be outside and the ground wasn't too wet.  By the way, he loves his sweaters!

 

The sun was shining brightly.

He only goes in the snow when it's warmer out.

When it's cold and snowy he goes out as quick as possible! 

On this day he stopped to soak up the sun.

Having a SCI and being on a ventilator is no match for the cold weather.  Because of my injury, I’m not able to feel if I’m cold or hot.  The only way I know is when it’s too late and my body starts spasming.  Also, the cold air can be very hard on my lungs.  When the vent pulls the air in, it goes through the tubing, then my trach and into my lungs.  There is nothing to warm the air up so it feels the same in my lungs as it is outside.  When someone breathes through their nose, the hairs warm the air up so it’s not such a shock.

There are still a couple months left of winter with more cold days and lots of snow!  As long as the temperature stays above 0°F I’m willing to venture out.  It’s definitely not the same to just look out the window as it is actually going somewhere.  Hopefully my wheels can take all the snow we’re getting and I can go somewhere soon.

Jenni

Here's to the New Year

As the New Year starts, I’m reminded of the reason why I choose life instead of going down a darker road. Since my accident, I’ve continued to stay positive and believe that things occur for a reason. I don’t take anything for granted because you never know what can happen. There are instances when life can be difficult and we may face times of trouble. That might mean having to deal with things that can be unimaginable; things that may bring us down or even break us.

Despite what I’ve been through and what’s happened, I still remain hopeful and have joy because that’s what gets me through even my darkest moments. I realize that to many people my situation may seem challenging or hard and some even feel sorry for me. However, I’m grateful for where I’m at knowing very well that my situation could be worse. I live every day like it’s my last and cherish what I have.

That brings me back to my favorite quote and what I always say about it: "Life is not measured by the number of breaths we take, but by the moments that take our breath away." This quote has two meanings for me. The first meaning is exactly how it’s stated. The second is a literal and more personal meaning. Life is not measured by the number of breaths I take, which happens to be 18 breathes a minute, but by the moment that took my breath away.

The highlight of 2013 was the birth of my niece, Avery Jean. She is now almost 5 months old and the happiest baby ever. I’m always greeted with smiles and she’s even starting to laugh a little bit! A child is the greatest gift anyone could ask for. I love being able to watch her grow and develop each and every day. My sister Kristen is a great mom also; I’m proud of her for everything she’s done and how devoted she is.

Avery 4 1/2 months

My goals for 2014 are to stay true to myself, continue motivational speaking and volunteering, find a job that I’m passionate about, start working on writing my book, paint and update my blog more. I’m currently in the process of redesigning my blog and my room. Not sure what that says but I am mainly trying to make changes in my life. It’s difficult in my situation to be spontaneous with change. It is definitely a process and I get bored easily not being able to do things all the time when I want to do them. Although I believe I make the most of my situation and strive to be a better person every day.

Jenni

"To laugh often and love much; to win the respect of intelligent persons and the affection of children; to earn the approbation of honest citizens and endure the betrayal of false friends; to appreciate beauty; to find the best in others; to give of one’s self; to leave the world a bit better, whether by a healthy child, a garden patch or a redeemed social condition; to have played and laughed with enthusiasm and sung with exultation; to know even one life has breathed easier because you have lived-this is to have succeeded."

-Bessie Anderson Stanley

"There are only two ways to live your life. One is though nothing is a miracle. The other is as though everything is a miracle."

-Albert Einstein

Tis' the Season

Merry Christmas everyone!  Every year since my accident we started hosting all of the holidays at our house.  It’s just easier because of accessibility; I can’t get into any family members houses.  We have some family coming tonight for Christmas Eve and some tomorrow evening for Christmas day in which we will celebrate and open gifts.  My mom, sister and I will exchange gifts Christmas morning.

I didn’t ask for much this year, I usually don’t.  I enjoy buying things and giving gifts instead.  To me, Christmas is about spending time with family and enjoying their company.  Although I know to others it’s all about the presents and the material things.  Despite reasoning, it’s nice to see everyone together and having a good time.

I hope you find peace and joy in this holiday season!

Jenni

Indoors while Redesigning

I know I have not been posting as much lately (or this year).  It's been hard for me to get into the groove.  Part of it has to do with using my computer… It takes a really long time for me to write a blog post using speech recognition software.  Every time I breathe it picks up the sound and things I'm saying something else.  I'm hoping to get that revised soon with a new headset.

I’ve still been volunteering and advocating.  I had a board meeting earlier this week for Midwest Special Services (description in the previous post).  Although, I’ve been spending an awful lot of time indoor due to the weather.  Over the past week it got very cold outside.  It’s currently in the single digits (high of 5°F today) and expected to get colder tomorrow.  It also snowed the other day making it difficult to get around.  My next post will be about winter and Minnesota!

I’m currently in the middle of redesigning my blog.  It will have a totally new look and I will be focusing on posting more.  I also may start posting about other things and issues related to people with disabilities, along with updating you on my life.  In the future to come, you will also be able to purchase my artwork!  I’ll be ordering prints and making more originals for people to buy.  This blog will be back up and hopping soon!

Do you have any ideas or suggestions for me?  Is there anything you'd like to see differently?  What have you noticed on other people’s blogs or you have on your own that’s interesting?  I’m looking for lots of comments on this one as I am trying to please my readers as well as keep it to my own liking.

Jenni

Volunteer and Advocacy

The past few months have been kind of hard with figuring out how I want to spend my time.  I graduated high school spring of 2005.  After that, every semester from fall of 2006 to spring of 2013 I attended college (including some summers).  However, this fall semester I chose not to go back and to take a break.  I have my associates in communications from Normandale Community College and attended one semester at St. Thomas University to get my bachelors in communications.

Ms. Wheelchair Minnesota 2011

Over the past couple years I’ve had the privilege of being an active part of my community.  I won Ms. Wheelchair Minnesota 2011 in which gave me an opportunity to attend events and advocate for people with disabilities.  I did speaking engagements and went to various events promoting my platform, making multiple connections and inspiring others.  I also flew on an airplane for the first time since my accident to attend the Ms. Wheelchair America competition in Michigan, where I won 4^th runner-up.

Since 2006, I’ve done motivational/public speaking to over 25 different schools, organizations and events.  My goal has always been to share my life story, educate others, and to show the abilities of people with disabilities.  By speaking, I teach others not to take things for granted, never give up and to live life to its fullest.  I’ve spoken to physical therapists, nurses, engineers, others with disabilities, the public, schools etc. (anywhere from 1^st to 12^th grade).

Aside from motivational speaking, I’m on a couple of Board of Directors.  Currently I’m on the BOD for Ms. Wheelchair Minnesota and Midwest Special Services.  I attend meetings and state my opinions along with making decisions about the different nonprofit organizations.  I’m also on committees within the Boards.  It feels great to be able to have a voice in such great organizations helping others.

I was a volunteer at Gillette Children’s Hospital.  In 2006, I worked with kids in outpatient doing crafts and watching them colored.  It was cool because I had my own table set up.  They could come over and spend their wait time keeping busy.  I love to see what creative talent came out of every piece of artwork.  As of now, I am a volunteer at Gillette’s Lifetime Clinic.  My job description is to work with people using speech recognition software.  The clinic hasn’t needed me for a while on that specific of a topic.

Eric LeGrand telling his story and answering questions.

Lately, I’ve had the pleasure of doing a lot of volunteering, advocating and attending events.  Last month on October 5, I attended a kickoff event for new members put on by the Minnesota Spinal Cord Injury Association (MNSCIA).  As stated on their Facebook page, “The Minnesota Spinal Cord Injury Association (MN Chapter of NSCIA) is an advocate for people affected by spinal cord injury/paralysis in Minnesota by being the central point of access to resources.”  On November 15, they co-hosted an event I attended that featured Eric Legrand.  He is a former Vikings player who sustained a spinal fracture during a football game.



Speaking at Ridgefield Middle School-November 15, 2013

Also over the past couple months I did motivational speaking to a middle school and high school.  I love being able to talk to the kids and tell them that anything is possible and not take things for granted because you never know what’s going to happen.  After I speak, I always have a question and answer session in which they really respond to.  It also helps me for speaking in the future to know what’s important and what kind of things they want to know.  I’m hoping to do more speaking soon.

I’m very proud of all the things I’ve been able to do to help out others in my current situation.  And although I’m not going to school as of now, I know my accomplishments and achievements have not gone unnoticed.  I’m going to continue expanding my knowledge and helping people in need.

Jenni

“Everybody can be great. Because anybody can serve. You don't have to have a college degree to serve. You don't have to make your subject and your verb agree to serve.... You don't have to know the second theory of thermodynamics in physics to serve. You only need a heart full of grace. A soul generated by love.”

-Martin Luther King Jr.

Compile Post: Anniversary Day

This is a compile post of past journal entries with added new content:

Chrysalis

Throughout life you will learn

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

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

Today marks the 11 year anniversary of the accident that changed my life.  This day doesn't frighten or scare me; I don't get sad or depressed; I don't think why me or about all the "what ifs". I just live and thank God that I am still living and still hear on this earth able to live my life with this change. The accident did change my life, but it didn't change me. I'm still the same person I used to be. I still want to love and be loved. I still need friends and family to support me. I want to be an advocate for others with disabilities like me; others who have faced similar changes. I also want to show people not to be afraid of change. Because of this change I live my life differently.

My accident has definitely altered my outlook on life.  I feel very fortunate to be alive and don’t take anything for granted.  I value my life and my things more and try to do good for others.  It has had a profound effect on me.  I am a better person today because of it and have learned a lot over the past years. I’ve also met some wonderful and amazing people with whom I never would’ve met if this hadn’t happened to me. 

Every year on this day I choose to celebrate life. I always say happy anniversary to me.  It wasn’t a tragedy or a disaster; it didn’t ruin my life or destroy me to pieces; I’m not broken, damaged, or shattered about it; I didn’t have a meltdown or blame anybody else for it.  It was simply what I call it-an accident.  It was an obstacle in my life that I had to overcome.  A challenge in which I had to accomplish and believe I have done so to the best of my ability. It may be hard at times, but I'm happy and that's all that matters.

I've always felt that there was a reason why the accident happened and I survived. Maybe it was to help people in my situation or open someone's eyes to what it's like living with a disability. Whatever it may be, I'm glad that I did.  Word of advice: don’t take things for granted, you never know what can happen.

Jenni

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

-Corrine DeWinter

Speaking After My Accident

Part 2/2

(It is recommended that you read 1 first by clicking here.)

Earlier this year I received this question in my blog comments:

Question: Do you use or have you tried the Passy-Muir speaking valve? I have used their speaking valve since being trached and vented 13 years ago with great success. There was another man that presented with me who was a quad and had tried using the speaking valve but found it difficult so he wasn't using it. I have MS and it has affected my respiratory system so I am vent dependent 24/7.

Here is an official description of a Passy-Muir Valve. The bolded words within the descriptions only apply to me. I’ve also put a summary of the description in my own words in parentheses.

What is a Passy-Muir Valve?

 Invented by a patient named David Muir, the Passy-Muir^® Valve is a simple medical device used by tracheostomy and ventilator patients. When placed on the hub of the tracheostomy tube or in-line with the ventilator circuit, the Passy-Muir Valve redirects air flow through the vocal folds, mouth and nose enabling voice and improved communication. Years of evidence-based research has shown that the Passy-Muir Valve offers patients numerous clinical benefits beyond communication, including improved swallowing, secretion management, and oxygenation.

Why use a Passy-Muir Valve?

"No Leak" Design
 

The patented "No Leak" design of the Passy-Muir® Valves means that the valve is always in a closed position until the patient inhales. The valve opens easily with less than normal inspiratory pressures and closes automatically at the end of the inspiratory cycle without air leak and without patient expiratory effort.

(In other words, when a breath comes in, the valve opens and then closes directly afterwards. The air has no other place to go but completely out my mouth or nose. This allows me to direct the airflow which way I want it, allowing me to increase volume and talk easier. Without the valve, the airflow can go back down into the tubes or leak around my trach, ultimately making it harder to talk with less breath.)

Closed System

Unlike open position speaking valves, the closed position of the Passy-Muir Valve allows the patient to create a positive airway pressure and restores the patient to a more normal "closed respiratory system". The "closed system" also creates a protective column of air in the tracheostomy tube which resists secretions from moving up the tube and occluding the valve. Instead, secretions may be coughed up around the tube and expectorated or suctioned from the mouth.

(The valve has helped greatly improve my secretions. I’m now able to cough most of them up instead of having to suction them out through my trach. Over time, suctioning can be tough on my trachea and may cause scars to occur.)

http://www.passy-muir.com/what_is

***

The question proposed at the start of the post makes me think back to the beginning, the weeks after my accident and learning to speak again. Next, I posted some pieces of journal entries that my family made on a Caring Bridge website that was set up for me after my accident. It’s interesting to read the progress I made and also explains part of the answer to that question. The "Valve" that they’re talking about is the Passy-Muir Valve described above. Be in mind that my accident was November 1, 2002.

***

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.

Wednesday, November 20, 2002 at 07:49 AM (CST)

Jenni also received her long awaited new trachea tube. This one is much smaller and much more comfortable for her. A speaking valve was temporarily installed, and she worked her vocal cords for about 15 minutes. It was nice to hear her sweet voice

Friday, November 22, 2002 at 08:31 PM (CST)

At this point there has not been any sign of improvement to Jenni's spinal cord, nor does she have any sensation below the point of injury. She still requires a ventilator to breathe. Regardless, we are filled with so much hope as we look for just one little sign of improvement, and we are so thankful to have our Jenni in our lives, and in yours.

Sunday, December 01, 2002 at 11:45 AM (CST)

This morning the RT removed some air from Jen's trachea tube allowing her to speak without the valve. She is doing a wonderful job of adjusting. Now she can speak at will, anytime. Soon they will remove all the air allowing air to pass over her vocal cords all of the time.

Monday, December 02, 2002 at 07:39 PM (CST)

Jenni has made some very big strides the last couple of days. The Staff has removed almost all of the air,(actually water in this style), from her trachea insert. Picture a small tube inserted into a larger tube. In this case the small tube is the trachea insert, the large tube is Jenni's actual trachea tube. Around the small tube is a cuff, or balloon containing water. Inflated this cuff seals the trachea tube allowing air to enter and leave only through the small tube. Deflated, it allows air to enter the small tube, but exit past her vocal cords.

Jenni has found the joy of talking again-anytime she wants! She's loving it and so are we.

Tuesday, December 03, : on 2002 at 09:59 PM (CST)

Wow! What a difference a day makes. Yesterday we explained how some water was removed from the cuff in Jenni's trachea insert allowing her to talk...freely...anytime she wanted...and she did...all day...til she was hoarse. Today they removed all of the water from the cuff. She talked, and ate applesauce, and talked more, and drank 7up, then talked about mashed potatoes and how good they would taste, then got mashed potatoes from the cafeteria and ate them, then talked about how good they tasted. What a difference a day made.

It is so inspiring to witness this amazing young lady work with this condensed version of the larger life she had been used to prior to the accident. Jenni is truly one of God's finer children and may the whole world get to know her some day...she would make a difference.

***

After trying the valve a couple of times and it not working for me, I told myself I would learn to speak without it. Ever since then I’ve been using my voice to do motivational speaking, direct cares and command my wishes whenever need be. However, over time my voice has gotten softer and softer. In Part I (the previous blog post) I explained the reason why:

 

***

There are many different types of traches. The one that I use has a cuff on it. The cuff is actually a balloon that gets inflated using air or water. It is around the stem of the trach. To better explain this, I have posted a picture below. It explains what the water does when the cuff is inflated. When the water gets taken out, every trach is different. For me, I have a huge air leak around my trach so if the water is taken out, most of the air escapes around my trach instead of out my mouth like it’s supposed to. I keep 3 mL of water in my cuff at all times to prevent this from happening; when all or most of the air gets diverted out of my mouth, it allows me to speak better and more clear. However, over time my stoma (the hole my trach is inserted in) has stretched so far that the leak has become more prominent even with water in my cuff. If more water is added, it leaks even further around my trach, diverting it away from my mouth and nose and I’m unable to speak loud enough. The leak also increases because the air needs someplace to go.

***

Due to the leak around my trach, I’m unable to speak as well as I used to be able to. This makes it difficult to do the things I noted above. Having a voice is everything to me. Being paralyzed from the neck down, I depend on my voice for multiple things. Being unable to use it properly had been heartbreaking. People started to not be able to understand me because I was talking so softly. Enter in the Passy-Muir valve!

Before I went into the hospital seven weeks ago, I visited a friend who has the same injury as mine and is also on a vent. I noticed he was speaking a lot louder than I could and he was also talking between his breaths (something that was difficult for me to do). He said he was using the valve and that made a huge difference in the way he spoke. I got very excited and wanted to try it ASAP.

After being admitted to the hospital and having respiratory therapists around me every four hours checking my vent settings, I finally asked one about the valve. He brought one in right away and I tried it and instantly noticed a difference. I could say the ABCs sequentially without waiting for another breath to come. I can definitely say I found my voice again. Now I use it every day and don’t like when I have to take it out. It’s amazing what a small device can do to improve the quality of one’s life.

I know these posts may be a bit confusing to some of you who may not be familiar with trachs or even speaking on a ventilator. I encourage you to write a comment or propose a question and I would be grateful to answer it. Let’s see if we can’t get a little side conversation going about this subject!

***

Thank you for all your support in me and my blog over the years.

Jenni