Being in the Hospital Is No Fun

On October 15, I had 2 seizures around 8 AM. The first one lasted about 8 minutes, and the second one about 2. I’m on 2 seizure medications to prevent having one, but not if they are related to something. Since the first seizure lasted more than 2 minutes, the protocol for me is to call 911. I was completely out of it from exhaustion, but I do remember the ride to the emergency room.

When I got there, they did some testing to see what might’ve contributed to the seizures. First off, I already had a high temperature. Mine is usually around 97° and I was at 99°- 101°. They took blood, x-rays, CT scan etc.-anything that would help to figure it out. The results were a higher white blood cell count and pneumonia. We think pneumonia was what caused the seizures. In the past, I had seizures that link to bad infections like bladder or lungs.

I was in the ER for 3 or 4 hours and then they moved me to the ICU. I spent Monday the 15th-Saturday the 19th (my birthday) in the hospital. They put me on IV antibiotics, which helps get the infection under control faster than the pill form. Once I was stable, I was able to go home on oral medications. Before all this happened, I was having to suction quite often with colored secretions, so I knew something was going on.

It took a couple of weeks to recover after I got home. I was weak and couldn’t go to ABLE because it was hard to even function during the day. I was pretty much feeling the same as before everything happened, only not miserable so I knew I was on the mend to healing. After being so sick, it takes time for my body to bounce back to normal. I’m finally there, able to withstand being in my wheelchair for the normal amount of time along with my regular routine.

Also, it does take a while to create blog posts, since talking a lot on my computer can be exhausting sometimes. I’ve been writing this post on and off for a while now. I would’ve finished a while ago, but most of my time spent on the computer is writing poetry. I posted one of them below although you can also check them all out by clicking on this link: my poems

Jenni

“A hero is an ordinary individual who finds the strength to recover to persevere and endure in spite of overwhelming obstacles.”-Christopher Reeve

Inner Strength

After severing the sky with lightning

thunder roars inside me

as my strength gives way at times

when I struggle to live my life

Feeling unjust in times of trouble

and lost in crowds of people

where I can’t find my inner being

as I’m clouded by my ongoing paralysis

Hope is me holding onto an

unknown future in which I remain

calm within my feelings

realizing just how beautiful I am

Then a gravel path visibly opens

when my consciousness clears

in which I preside to roll down

to see where my beginnings live on

Life as a Quad VI

Being a high quadriplegic takes a lot of strength and effort for me. My mind is constantly trying to fight with what my body wants to do but can’t. Loss of mobility has changed how I live life and the way I approach certain situations. A few of the most important things that I need to keep in focus are my mind, health, and spirit.

Something that’s difficult is keeping my mind at bay since it’s the one thing I can control. Since I can’t fidget or just move around when I am bored, it takes a lot of effort to just sit there and do nothing. For most people, they may enjoy that “quiet time” or break in their day. For me, it is difficult to just lay there doing nothing as I’m constantly thinking about something.

I read a paragraph about “checking in with yourself” online. It says the “strategy of checking in with yourself is a conscious effort to understand and acknowledge your current state of being. This strategy can involve several practices like mindfulness, journaling, or simply taking a quiet moment to reflect on your feelings and thoughts.”

I found that it was comparable to my situation. I’ve heard of many quadriplegics who might experience emotional and behavioral problems after a spinal cord injury. This can include feelings of sadness, anxiety, or clinical depression. For me, I have experienced all these emotions, and more, at some point over the last 26 years since becoming paralyzed.

After my mind, well-being is what I try to concentrate on. It’s not easy balancing everything, including my spinal cord injury. I’m constantly fighting with what my mind wants to do compared and what my body wants to do. Most days it’s not the same thing, and it can be frustrating and exhausting. Not to mention the trying to “not do” everything I want to. That includes going places, doing as many activities as I want, and being outside every day.

Over the last few years, I’ve slowed down in what I’ve been doing day-to-day. Although I feel strong inside, I wear down more easily. I find I can only be out somewhere for only a couple of hours before I’m exhausted or my social battery runs out. Often, I feel overstimulated, leading to stress and anxiety. In rare occasions, I need to remove myself from the overwhelming environment.

Some common triggers for crowd anxiety include the level of noise, activity, chaos, or the fear of not being able to leave quickly. This happened to me this year when I was at the Minnesota State fair. The crowds of people around me and not being able to find ways to tell others to “move out of my way” became an issue. I had to go into the bathroom, which had multiple stalls, but had cool air and less people. On that Sunday, August 22, 2024, it set a record for the most people being at the fair, at 256,015.

Adjusting to life after becoming paralyzed has been challenging, involving emotional, physical, practical, and psychological feelings. I’ve experienced physical limitations and emotional distress that can make daily activities more challenging than usual. One thing I try not to do is push myself too hard. Even though it’s not easy for me, I have realized over the years that it’s okay to take breaks and give myself time to heal both physically and emotionally. 

Jenni

Overdue Update

It’s been a while since I’ve written an update. The biggest news is my accomplishments at ABLE. I know I’ve written quite a bit about it, but the exercises that I have been doing have helped me in big ways. I still do the same ones but have improved in length of time and structure. 

After hooking up the electrodes to my abs, obliques, lower back and between my shoulder blades, I’ve been able to successfully sit on the side of the mat by myself without help. The PTs that I work with just sit down and keep their hands close to me in case I start leaning over. It’s also helped me be able to sit forward in my wheelchair without help to get my back brace and my sweatshirt on and off. This also includes stretching my back.

To recap about what electrical muscle stimulation (E-stim) is, it can be used to help treat pain and heal injured, weak, or diseased muscles. Electrical currents may help improve blood flow and stimulate the muscle fibers or nerves. They also use it on my arm’s, and then move them simultaneously into bicep/tricep curls, along with forward reach and grasp (essentially moving my arms forward and then backwards.) 

They do each set for about 10 to 12 minutes at a time, then I take about a 3-5 minute break between each one for 1 hour. With my abdomen, the stim runs for an hour also, and then I move myself side to side and back and forth. On Wednesdays is when I do stim on my abs and then move myself side to side, and on Fridays I use a bicycle that moves my legs and then stim on my arms. 

Each session wears me out completely, and I usually need to take naps after. Then I get into bed earlier and go to sleep earlier. It’s a big workout for my body, especially being paralyzed from the neck down. I’m very lucky that I have feeling, and can tell which muscle I am using, tightening it to move the way I need to. It really helps with ABLE.

I’ve also been obsessed with writing poetry. So much so that writing my book and inserting posts on my blog have been put aside. I go on the website at least twice a day, finding topics from contests to write about. Sometimes, I feel guilty for not writing my book or my blog for so long, but I’ve been improving my writing skills a lot lately with writing my poems. I would like to publish a book with poems I’ve written in it. I have posted my most recent ones below.

For quite some time now, I’ve been having bad neck pain. Talking with my therapists and doctors, neither could locate the source of it. After dealing with it, I finally made an appointment with my neurosurgeon. Tuesday was one of the longest I’ve had as far as appointments go. I left my house at 12:30 PM and didn’t get home until almost 6 PM. First, I had an MRI then a CT scan, then saw my doctor. Since I can’t have anything metal on me for the MRI, the respiratory therapists there needed to change out my trach. Mine has metal in it; they also changed from my ventilator to an MRI safe vent.

It was a very uncomfortable and difficult time but needed to get done. The results were good and bad. Good in that they didn’t find anything that would cause any harm, like a bone spur or my bones to be digging into muscles. Although, bad because it didn’t explain why my neck is hurting. My doctor thinks it’s hurting from muscle or nerve pain, which is what I thought as well. It’s also a thought that my wheelchair needs to be adjusted and that may be the cause.

For now, I’ll continue to do as much adjusting as possible to avoid it. I’m grateful for ABLE as it has been helping with my balance and moving. I’m also glad that I came across the poetry website so I can increase my creativity in writing and use that while writing my book. Hopefully soon I will get back to my book and finally be able to share it with all of you. In due time!

Jenni

Here are some recent poems I’ve written. Enjoy!

When Everett saw me

I was only gone for the day,

when I came home, Everett saw me,

he ran towards my footrest,

climbing his way onto my lap

Ever since that day happened,

he’s found his way up several times,

I don’t know how he can jump that high

but I was smiling ear to ear

There are many more moments,

in which my dog has made me happy,

but learning that he recognizes 

that his mom in a wheelchair, tops all

My Dog Everett

One ear up, one ear down

zooming around the yard

bouncing in the snow

with no place to go

Barking at the TV’s

and the squirrels in the trees

playing fetch with his toys

making all sorts of noise

Loves every dog he meets,

including the people he greets

if he could have his way

he would play all day

Everett is his name,

he likes to play all sorts of games,

a Chinese crested powderpuff

and he thinks he’s really tough

Oh, to fly

I wish I could fly like a butterfly,

soaring high into the open sky

with invisible fences around me

feeling the fresh air on my wings

I would fly to many places,

above the earth’s green grasses

go sailing in between the clouds,

dancing with the stars and sun

Since I can only imagine flying

I’ll close my eyes and think of

taking flight into the unfamiliar

finding a stick to land on to

the hot sun shines down

on a wild goose in water

soaking up its twin

Lack of Motivation

It is normal for people to experience a lack of motivation in life sometimes. However, when it becomes severe or chronic, it may indicate an underlying condition that could be serious. Loss of motivation can sometimes lead to burnout, depression, etc. I’m no expert when it comes to diagnosing others with symptoms and I especially can’t attest to which people experience it worldwide. Although, I can share my thoughts about my own motivation in life.

For me, it has to do with passion, interests, inspiration, progress, etc. Also, if I don’t feel up to doing something, I might be inclined to say “no” despite what the indication would be. If that happens a lot, I may not notice it and continue going down the same path. Although if others are willing to tell me, I go back and re-evaluate to see if there’s something I could be doing differently.

Another thing that’s worked to get/stay motivated is to go over the ways I have found in the past to keep me motivated. This includes all aspects of life, projects, relationships, etc. Some ways are to set small goals to build momentum and reward myself for the little things as well as the big ones. I’ve noticed this being the most helpful when I’m writing, whether it’s poetry or for my book. (Although I suppose it hasn't helped when it's come to writing blog posts!) I stay on one task, before going to the next.

I noticed that after my accident, when there were moments when things got tough, I would either keep a positive mindset or spiral down a path of unpleasant feelings. This also came with what was going on in my life at the time. School was a big one, and even to this day lack of independence makes things tough to deal with. Over time, I learned to only take on as much as I could handle, and not overwork myself.

Jenni

Here are some of my latest poems from the last month or so:

Things Happen for a Reason

I’m at a crossroad in my journey knowing,

that the entrance to the tunnel is my only way out.

It might simply be chance that brought me here,

needing clarity in a moment of struggles.

Trying to make sure all my bases are covered,

because going backward is not an option.

As I walk down the path towards the entrance

thinking “how my life will change forever?”

After that day I never stopped to wonder

“What if I was able to go another direction?”

Realizing that “things happen for a reason,”

becoming paralyzed is the end of this equation.

Loss of Movement

My restless body stirs screaming out,

like a wanderer of burdensome shown

limbs once agile find themselves bound,

in realms where muscles falter and cease to dance

How my loss of motion brings my spirits low

in the silence of stillness my hope falters

within these confines a fire burns out

a flame once resilient that light up the dark

Whispering for the grace of movement

like gentle waves caressing the shore

though my limbs may be still my journey persists

for within still moments my strength rises

Red Wings in Winter

Beneath a tapestry of Minnesota skies

in the hush of winters icy cold woods

sitting on a branch of a snow-covered pine

a scarlet red cardinal spreads its wings

Painting a picture of a breathtaking scene

a symphony of movement from tree to tree

its wings flicker in the golden sunlight, 

feet that carve through the frigid air