Another Number, Another Milestone

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 100,000^th 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.

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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.

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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.

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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." 

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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.

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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.

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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.”

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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.

Jenni

MNSCIA

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. 

Jenni

 

“Your present circumstances don't determine where you can go; they merely determine where you start.”

-Nido Qubein

 

"Acceptance of what has happened is the first step to overcoming the consequences of any misfortune."

-William James

 

The Hospital

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 !

Jenni