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!
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.
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 4th 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 1st to 12th 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.”
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.
(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.)
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.
I've received a couple of questions regarding speaking
with a ventilator and trach that I wanted to answer. First, I'll talk about me
and go over some basic 101 about trachs.The
post after this will talk about speaking after my accident.
I'm considered a vent dependent quadriplegic; I require
the use of a ventilator 24/7. This is a result of the level my injury is at,
which is C-1 C-2. When an injury occurs at the C-1 level (the vertebrae closest
to the skull), most likely it will affect the person's breathing. In this case,
intubation is required. A tracheal intubation, commonly known as intubation, is
the insertion of a flexible plastic tube that goes down the throat to maintain
an open airway. Then with the use of a ventilator a person is able to sustain
breathing. While in the helicopter on a way to the hospital they had to
intubate me.
Two days later, after finding out the extent of my
injury, the doctors took me to surgery to remove the tube and do a
tracheostomy. A tracheostomy consists of making an incision in the neck and
opening a direct airway through an incision in the trachea. The stoma that
results from this can independently act as an airway for a tracheostomy tube
(trach) to be inserted, allowing the person to breathe without the use of his
or her nose or mouth. A ventilator can be attached to the trach or it can
become the actual place a person uses to breathe. People can have trachs for different
reasons, not just spinal cord injuries. An example would be someone with
muscular dystrophy, someone who had/has throat or lung cancer etc.
My trach stays in the majority of the time, unless it's
being changed. In that case, my nurses do a trach change by taking out the old
one and inserting a brand-new sterile one. Depending on the person (age and
size) depends on how often the trach gets changed. They change mine every three
weeks, or unless it's needed before that. An instance where I would have to
have my trach changed before the date would be if there was a mucous plug
inside of it blocking my airway. This has happened before to me in which
someone has had to do an emergency trach change (sometimes suctioning doesn’t
clear this secretions as fast as just changing it does).Trachs are pretty expensive, so many people
sterilize them again in boiling hot water and reuse them.Since I don’t do it very often, I just throw
it away every time it gets changed.
I rarely have to suction anymore; usually every couple
days or so.That’s not very much for
someone who has a trach and is vent dependent.I don’t get big mucous plugs anymore and haven’t had to do an emergency
trach change in years.Now I just change
it during the scheduled times.Although
my situation is complicated, I try my best to say as healthy as possible.This includes staying away from smoky
environments along with avoiding others with colds or who are sick.
There is a machine that I have called a cough assist; it
attaches to the trach like the vent tubing does.I use that twice a day.It blows air into my lungs and then pulls it
back out.The cough assist has done
wonders for me, including clearing my lungs.Usually it brings up secretions which I then either suction or cough
out.This is most of the reason why I
don’t have emergency trach changes anymore.
Cough assist machine
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.
This is a picture of my trach. The cuff is attached by a string (shown floating above the trach). The balloon is around the bottom of the trach. At this point it is not inflated.
This is what it looks like when the cuff is inflated. It closes off the airway in the trachea so air cannot come out the mouth or nose. It all gets diverted back down the tubes, making it so that the person cannot speak.
I don't keep enough water in my trach for it to completely close the air from coming out my mouth and nose. The balloon can hold at least 5 mL, however I only keep 3 mL. 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. That's why I keep 3 mL of water in-to prevent air from escaping around my trach instead of out my mouth and nose like it's supposed to. That's how I'm still able to talk. When all or most of the air gets diverted out my mouth, it allows me to speak better and clearer.
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.
*A tracheostomy is an opening into the trachea (windpipe) that allows air to be pumped directly into the lungs. Many trach tubes are fitted with inflatable cuffs, which, when deflated, allow air to pass over the vocal cords, making speech possible. When the cuff is deflated, air "leaks" up around the tube and less air gets into the lungs, but many people can tolerate this air leak with adjustments to their ventilation system. http://faculty.mercer.edu/summervill_j/jeanchiang/itisallaboutme.html
Question:
Do you know why some people use a vent and a trach that
dowake up Dragon esn't allow them to speak? I heard of someone with muscular dystrophy who had
a vent and 'cuffed' trache which could be set to allow her to speak or not, but
she usually had it set not to (during an interview she had the cuff set so she
could). Is it a matter of money or of medical necessity?
Answer:
No, it is not a matter of money.It may be a matter of medical necessity or
just a preference.As I explained above,
I use water in my trach cuff to prevent leaking around my stoma and trach.In this case she uses a cuffed trach and
prefers (or needs) to have it inflated fully, which takes away her ability to
speak.Either way, not all people with
trachs have a cuffed one.Like I said,
there are many different types of trachs; I just named one kind.
Stay
tuned for the continuous to this post coming up soon!
Since I started this blog, my goal has always been to
inspire others and encourage people to go on in spite of their circumstances.Regardless of difficulties and challenges
that everyone experiences, my purpose has been to show that it is possible to work
through them; to demonstrate that no matter what obstacles we may face in life,
there is a way to overcome them.All one
needs is a little positivity and faith and to know that everything’s going to
be okay.
While I was in the hospital, my blog received its 100,000th
visitor.I’ve kept a tracker so that I
as well as others could see how many people have seen my blog, read my
writings, and maybe have been inspired by what I’ve said.Over the years, I’ve done blog posts whenever
my blog has hit a certain amount of visitors.I wanted whoever visited to know they weren’t the only ones reading what
I had to say.I’ve inserted sections of
each post so that you can see the progress my blog has made from the beginning.
*****
February 26, 2009:
I have almost 3000
visitors since October 26, 2008, and that includes people from all over the
world. People from countries such as Mexico, Germany, Canada, Norway, Spain,
Australia, Netherlands, Brazil, and parts of the United Kingdom are all tuning
in to read what I have to say. I'm also getting visitors from all over the
United States. I would just like to say keep on reading on and know that I am
happy to invite all of you into my life.
June
27, 2009:
Wow! Over 8000 visitors. I'm waiting for the day that the
number of visitors hits 10,000. It won't be long now. Maybe I'll have a party.
I encourage all of you to pass my blog onto others. The more people that I can
share my story with the better!
Thanks for all of your questions and support. You are the reason I keep my blog
going.
August
4, 2009:
I just exceeded 10,000 visitors. How exciting! Thanks
everyone for reading my blog. Keep the comments coming; I enjoy reading them.
January
6, 2010:
Wow! I've reached 20,000 visitors. When I started this blog,
I never imagined that so many people would be reading what I had to say. I
realize how many people I reach out to and help with each day passing. I'm glad
that I can be there for those who need a little support and encouragement.
April
20, 2011:
I just wanted to inform everyone that my blog has now had
over 50,000 visitors since I started it October of 2008. That's so amazing!
Every day I think about the thousands of people that are impacted by me or what
I've written. It makes me feel good to know that I can help and educate others.
*****
I also wanted to count the number of visitors for my own
purpose; to visually see it rise and remind me of the reason I started this
blog.
*****
On May 21, 2012, I wrote this blog post titled “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 a 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."
*****
Over time I’ve thought about my blog and what it means to
me.All of the posts above speak about a
number; a counter that shows how many people visited my blog.I realize that I’ve been focused on that
number rising to indicate the amount of people reading what I have to say and
possibly being touched or affected.To
be honest it’s not about the number; it’s about the lives I touch and the
people I inspire.
*****
On August 14, 2010 I wrote:
Sometimes I treat
this blog as sort of a diary. It's not always easy to talk to someone
face-to-face but it's definitely easy to talk to a computer screen. As long as
I don't think about the fact that tons of people are reading my writing, I can
get out a lot which is good for me. Not sure that it's always something others
want to read but it's a helpful tool for me to get things off my mind. I know
occasionally I help others as well who are going through similar situations
with my honesty.
*****
One thing that helps is when I receive comments on my
blog about how inspired others feel when they read my writings.For example:
Kaylyn said:
"You're such an
inspiration, Jenni! Thanks for keeping up with your blog- I'm sure there are a
lot of us that like to follow your journey.”
Anonymous
said:
"I'll just come forward and say I'm one of these people
that randomly anonymously frequent your blog lol. I found you by one day
googling "Paralyzed from the neck down" on google images and your
picture came up with you in a standing frame. I believe this was on the easy
stand website? with a little blurb on your story. Anyway, it had a link (at the
time) to this site and I clicked on it and ended up here from time to time.
Mostly out of some type of curiosity.. I don't know, I may sound a bit stupid
or naive but I never believed a person paralyzed from the neck down was
actually a real thing. I thought it was only some type of fantasy scenario that
happended in a movie, T.V series (Touched by an angel-eque) or only was
suffered by the actor Christopher Reeve. Hence the curiosity about you... I
just was "pulled in" that you had suffered and were living with this
kind of injury and wanted to see how you were able to get on in life.
I was a bit puzzled how you couldn't be depressed and was shocked to see how
normal your attitude was and how you aim for an actual career instead of just
being "the patient". You're really surprising. You have even
re-shaped a lot of my perception on disability.
I just thought I'd lay down my thoughts and reasons for
coming to this site. I'm sure your curious as to who your anonymous readers are
and why they come here. Don't feel pressure to be any type of inspiration or
anything to us.. just live your life. Update only when you feel like you want
to.”
*****
I’ve realized that another reason I created this blog is
so that no one would feel alone.So that
people would feel like they either had someone to look up to, something to look
forward to, a person to help make their life worth living, or just lose their
way in the life of someone else just trying to live theirs.Since my accident I had thought of myself as
a person with a disability-never the other way around.I always strive to look on the positive side and
even on my down days seem to find a glimmer of hope.This is my nature.This is who I am.This is the girl with The Site That Breathes.
Life after a spinal cord injury (SCI) can be tough.Having to deal with the change of being able
to move and feel everything to all of a sudden not, is the most frustrating,
challenging, and difficult part of a SCI.I’ve learned over the years how to cope with my spinal cord injury and
the different abilities that I am able to do.I’m lucky to be so positive about my situation.The reason I choose to be, is because I
couldn’t imagine going through life being mad or sad about what happened.It is what it is and I choose to deal with it
the best that I can for my own sanity.
As hard as it is I know that by working through the challenges and overcoming
each obstacle that comes my way is another victory towards a better quality of
life for me.If I can keep that momentum
going and those thoughts in my mind, I know for fact I can accomplish anything.My goal is to teach what I’ve learned to
others; to share my story so that maybe I can help those in need of a little
inspiration in their life to keep going no matter what comes their way.One thing that helps me along with others is
the different organizations working to improve the quality of life of people
with SCI’s.They also want to help show
others what life is like with a SCI so that they can understand a little bit
more about what one goes through when they suffer an injury like mine.
The biggest organization that I’ve found whom is taking on this task is the Minnesota
Spinal Cord Injury Association.Taken
from their website: “The Minnesota Spinal Cord Injury Association (MNSCIA) is
committed to enriching the lives of people in Minnesota who have been impacted
by spinal cord injury or paralysis. Our members include people who have
incurred paralysis or disability due to a spinal cord injury, their families
and friends, healthcare and rehabilitation professionals, policy makers, and
corporations.
The MNSCIA strives to provide education, advocacy, and networking to our
membership.”
On Saturday, they hosted a lunch called “Authentic
Answers to Unspoken Questions”.The
session was intended for attendees of a weekend conference to meet someone with
a spinal cord injury outside of the medical environment.It was a conversation over lunch complete
with answers to questions that continue to remain unspoken among the current
field.
Last week they asked me to be a part of it.Including me, there were a total of six people
with spinal cord injuries.Each person
with a SCI sat at table for lunch with medical professionals attending the
conference.I was at a table with five
people (two were respiratory therapists from Gillette); there was also another guy
named Sean, who had a spinal cord injury as well. It was a great way to
connect and talk with people about my injury and recovery.I was asked a lot of questions about rehab
and what it takes for me to live on a daily basis living with a SCI.
This is the group of people hosting the event, along with the others with SCI's. Most of them are part of the Board of Directors for MNSCIA.
I’m glad I was able to attend and shed some light
on what I as well as others with SCI’s go through.It was also a great way for medical
professionals to see what it’s like for someone after they leave the hospital
and go about their life however they are able.I look forward to doing more with MNSCIA in the future.
Check out their website at www.mnscia.org and
sign up for free membership with MNSCIA.
Although it’s difficult to tell a story when you don’t
remember everything that happened, I’m going to talk about my recent ER visit
and hospital stay. Luckily I had family
and caregivers with me who have helped me fill in the blanks.It’s also hard to do a quick “update” without
going into detail about everything that happened.The shortest thing I can say is that I spent
August 29-September 6 in the hospital-now here’s why.
On Thursday, August 29 in the afternoon I started
experiencing severe pain and having “episodes”.They were instances where my eyes would roll back in my head and flutter
and no one can get a response out of me for however long they happened.Half the time when I came to I could remember
things and half time I couldn’t.I was
also screaming in pain that was shooting up into my head.
I was at my house with my physical therapist, nurse and
mom.They debated whether to take me to
the ER or call 911, but opted for the latter.The only thing I remember from this point was being loaded onto the
stretcher and wheeled around the back of my house.They couldn’t find an IV on me in the
ambulance and I kept telling them to try the top of my hand.At that point I wasn’t aware that that was
one of five places already tried.They
took me to Methodist Hospital and the first thing they did was an MRI to see if
they could find what was causing everything.I also remember bits and pieces up to the MRI and afterwards because I
fell asleep.I thought this was really
odd given that extreme loud noises come from the machine (so did everyone
else).
On a side note, they were calling my “episodes” seizures
and my mom had to convince them otherwise because she had seen this behavior on
me before.In a very similar situation
back in 2008, I was in baclofen withdrawal.It was due to a break in the catheter from the pump administering the
medicine into my spine.Although in that
situation, I was having severe spasms along with the “episodes”.It took them 48 hours to find out what was
wrong when they eventually decided to replace the pump.(To read about my baclofen pump click here and to read the post about my withdrawal click here.)
I was in and out of it all weekend.I don’t remember much and supposedly was
really loopy on drugs!After they didn’t
find any results on the MRI, my mom consulted with the neurosurgeon about my
history of baclofen withdrawal behavior.It was decided that that was the reason for my pain and “episodes” and
on Friday they transferred me to Gillette Children’s Hospital in St. Paul.From there the plan was to do a blind surgery
not knowing or being able to see what was going on with the catheter from the
pump at that time.On Sunday I went into
surgery and they replaced my baclofen pump and catheter, and also moved the
location of the catheter from T5 to C5.(I had talked about moving the catheter higher in an earlier
conversation to help with decreased spasticity).
When I woke up they could tell that the surgery was a
success and that I was better because the pain and “episodes” had stopped.As a result of the procedure, I had to lay
flat on my back or side for 72 hours.I
could only put my head up 10° when I ate. Needless to say I counted down the hours and
then minutes until Wednesday at 6:15 PM when I could start raising my head up
10° an hour.(I made it almost 4 hours
the first night without any trouble.)The following day I worked on sitting up in bed more.That’s when I could finally see what my room
looked like and the view from my window.
Thursday evening I got into my wheelchair for the first
time in a week.I still remember how
excited I was even if I wasn’t going to leave the hospital room.I sat in my wheelchair for three hours and
from then on pushed myself so I could go home as soon as possible.The doctor had told me that morning that if I
tolerated sitting for a few hours that I could go home the following day
(Friday).On that note I was out of the
hospital around 2 PM Friday, September 6!
Brody was so excited to see me when I arrived at the
house.He had been missing me all
week.His breed is known to be very
loyal to their owners.There was even
many times where he wouldn’t even eat.In
the hospital, I called and talked to him over the phone and he would wag his
tail in excitement.I also missed my
little niece, Avery while I was gone.Let’s just say I had a little reunion waiting for me!
It ended up taking a couple of days for my body to get used
to my old routine.My mind recovered
faster than my body wanted to.I found
myself in a couple instances where I’d be so tired everything would shut down
at once when I least expected it.This
led to some quick transferring from my wheelchair to my bed by my family and
caregivers.Needless to say less than
two weeks past surgery date I’m finally back to normal and fully recovered.
Although the whole situation in itself was hard and I
don’t like being in the hospital, many good things have come out of this whole
experience. The biggest and most obvious is how much better my muscle tone
is.Throughout the last week I’ve been
experiencing the different stages of my muscles as they get used to the new
amount of baclofen that I’m on.It’s a
lower dose than before since the catheter is higher up.It’s amazing how much more relaxed my muscles
are than before.I never realized how
much just moving the catheter up would change that.Also, it’s easier to do range of motion and
therapy on me.
About a year ago I started taking some oral baclofen
because my baclofen pump was at its max dose.I have a Doctor appointment on Wednesday to assess the pump and the
dosage I’m getting.I’m going to see if
I can turn the pump up and taper off the oral baclofen.That would make for seven less pills a day!
It took this experience for me to find out how much my
muscle tone was affecting my ability to do things.This makes me think that there was something
wrong with the pump for quite a while and I didn’t realize it.In the future, I’m definitely going to trust
and listen to my body; I’ll know how to react if it tells me something’s just
not quite right.
Stay tuned… I have a lot of posts building up in my head !
I know the blog posts this year have been far and few. Lately I’ve been getting emails and messages asking for updates. Since I stopped blogging altogether, it’s been hard to start up again because I feel like I’m playing catch up. Every time I start writing I get stuck with what to say because there’s so much. A lot has gone on in the past few months and I know I won’t be able to fit it all in one post. That’s something I had to realize while starting this one. However, there is one thing that trumps everything else.
The most exciting news is that I became an aunt! My sister was originally due September 7. However, on August 15 her water broke. She went into the hospital and after waiting all day, she was finally induced. It lasted through the night, but I’m happy to say that she delivered a healthy baby girl. Avery Jean was born August 16, 2013 at 5:56 AM; she weighed in at 6 lbs. 15 oz. and is 20 ½ inches long.
My sister came home from the hospital yesterday. She took 12 weeks off at her work, so she’s been hanging out at home. I’m really enjoying spending time with mom and baby! Being an aunt is a very enjoyable experience. I’m so excited for the months and years to come when I get to spoil her rotten and not feel bad when I hand her back to mom! I posted a couple of pictures below for you to see.
Only 12 hours old… So precious!
First day home from the hospital!
Now that I’m getting a rhythm back, I’ll definitely catch you up with what I’ve been doing and feeling all summer.
Jenni
“There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle.”
― Albert Einstein
It’s been a long and tiring past couple months. I was completely engrossed in school at St. Thomas University and have also been fighting multiple infections off and on. Spring semester finally ended this past week and I’m now a free woman! I decided to take the summer off of classes and give myself a well-deserved break. The campus is 30 minutes away from my house (without traffic) and I use a bus service called Metro mobility to take me there and back. The rides are usually long (sometimes longer than the time I spend in school) and it was getting hard on me physically to attend four days a week. I ended up withdrawing from one of my classes in order to focus on my health and body. I was becoming increasingly stressed, which didn’t help my immune system.
For months at a time I battled frequent UTIs and was put on a countless number of antibiotics. This ultimately landed me in the hospital in March (my last blog post explains this). By being on antibiotics I also got other infections in my body because they killed all my good bacteria. Needless to say, I’m finally infection free for the first time since October 2012. Antibiotics and infections drag me down quite a bit which ultimately led to my inability to focus on school or anything else for that matter.
Unfortunately, I decided I’m not going to attend St. Thomas this fall. It’s too far to drive using Metro and they don’t have any online classes (the less I have to be there during the week to better). I’m not sure what I’m going to do in the fall. I am looking to volunteering a lot this summer and see where that leads me. Maybe an opportunity will arise from there. I just want to get out, meet new people, and help others at the same time.
The best part is I’m able to get outside and enjoy the sun (when it’s not raining). I love taking my dog Brody for walks around the neighborhood. (Most of my nurses like the exercise too!) I’m also going to start reading a book for fun. I say it that way because every time I’ve wanted to just read a good book, I felt guilty that I wasn’t reading my books for school instead. Same reason I hadn’t been updating my blog-too many assignments to write on the computer.
Now that I’m searching for things to do for the summer, let me know if you have any suggestions on things I can do to fill my time. I already have plans to update my resume and clean out “junk drawers”. The other day I had time to play a game and yesterday I painted for the first time in months. Needless to say my life is a little more stress-free at the moment.
Well, I'd like to update everyone on how I'm doing. I just got home from a weekend vacation stay at the hospital. Last week I was having some pretty intense migraines and also a rash on my abdomen. It got so bad Friday so I went in to the ER to get it checked out. They couldn't find what was wrong so they admitted me. It turns out I had a really bad infection that was causing everything. After a few days of pain meds and antibiotics, was discharged today. I came home from my vacation 100% better! I'm glad that I decided to go in to get checked out because I was contemplating just sticking it out. I plan on spending the rest of today and tomorrow relaxing and then going back to St. Thomas on Tuesday. It feels good to be home…
Jenni
February has completely gotten away from me.I started classes at the University of St.
Thomas on the fourth.It has been an
enlightening experience so far.I love
my classes and teachers.I’m taking
Public Communications and Mass Communications Research Methods.They are both required within my major, which
is Communications and Journalism.I’m
very excited happy that I chose such a great school. The campus is gorgeous and
I look forward to going there every day.Although the schedule was a challenge at first, I’m getting better at
managing it.I go to class Monday
through Thursday; I’m not used to being out that much.However, it’s definitely getting me prepared
for having a job in the future.
The hardest part so far has been transportation.I take a bus service called Metro
mobility.It’s a rideshare program where
you call and set up your rides, stating what time you’d like to be picked up at
and need to be there by.They determine
based on what other people have scheduled what fits best with each driver.Unfortunately, a computer does all the work
and doesn’t calculate loading and unloading or waiting for passengers.They are on a tight schedule and it makes it
hard to ride with them.The only good
thing is that I can get bus tickets through the state which means I don’t have
to pay for them. They charge four dollars for peak time (6-9 AM and 3-6 PM) and
three dollars for nonpeak.
Since I’m gone at school four days out of the week, it
doesn’t leave much time for other appointments or homework.Hence the reason I haven’t been able to do
any blog posts lately.(I’ve been
working on this one for a while now!) Nursing has gotten a little better.We hired two nurses, one full-time and one
part-time however, there are still some holes in the schedule.Aside from that, a few other people have been
willing to fill in on open shift days.That’s always nice, especially because we get more back up that
way.Although, that also means I’m busy
that day training in the new ones.
This is only the beginning of my blog post… Stay tuned in
the next couple days for the other half.
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.
