Spasms and Another Hospital Visit

I have explained before about muscle spasms being a part of having a spinal cord injury. I have asked a few questions to my doctors if I should increase my baclofen pump (up the dosage) because of increased spasticity.

A specialist in physical medicine and rehabilitation along with spinal cord injury medicine working at Sister Kenny who helps loosen my neck explained some reasons to and not to increase it. Also, why I may be more spastic now.

Increase-if the spasms hurt, they make it hard to sleep or interfere with daily activities.

Some reasons why I may be more spastic right now are: weather changes, Botox needed in my neck, health issues, get worse after a while (increase then muscles get used to the dose then the process starts all over again) etc.

Not to-one thing she explained is that despite muscle spasms being hard to control or a nuisance, they are good for keeping muscle tone or muscle activity (maintaining muscle circulatory function, compensates for muscle weakness, keeping bone density etc.

She also said to spend a little extra time working through each spasm (if my arms spasms straight, work on bending to release the spasm.) This will make it easier to get things done, even though it may take up more time than usual. Although I usually only spasm when somebody is moving one of my limbs, like range of motion, stretching me, getting me dressed, etc. Never just by myself, which happens to many people with spinal cord injuries.

The biggest problem that I have other than muscle spasms is pain, the worst being my neck (specifically my right side.) I’ve talked before about using Botox in my neck to help loosen my muscles. Although it only helps for about a week and then tightens up again. She also works on relaxing muscles in my neck, which is the main reason why I see that specific doctor. Also, my right arm is dropping out of its socket, which causes difficulty with range of motion and pain.

June 15 my spasms were intense making it difficult to do anything including range of motion, sleep, sitting in my wheelchair, etc. Also, when I was eating dinner on that Saturday night, I wasn’t feeling good. When my night shift nurse came on, she could tell something was off with me, so she took my blood pressure. It was 200/130, which could be a sign of autonomic dysreflexia (AD-something people with spinal cord injuries get when there is pressure somewhere, could be a wrinkle, needing to be cathed, bowels, etc.) or an infection someplace.

Even for me, it’s too high to handle no matter what it’s from, so she called 911 and off to the ER I went. Just another ambulance ride to add to my list. Along with my blood pressure being high, I had a fever and other issues acting like there was something wrong in my body (my nurses and I noticed something was off within a couple weeks before I went in.) I spent 5 days in the hospital, while they scanned my body head to toe looking for answers.

I had an MRI of my brain, CT scan of my head and another for my chest, abdomen, and pelvis. Also, they took blood, sputum and urine cultures along with multiple other tests. All of them came back to be negative, which was a mystery to me and my doctors. I was on 2 different IV antibiotics, which helped with any infection in my body go away even though they couldn’t find a source. This was the 5^th time since October that I’ve been in the hospital due to some sort of infection.

My body and I have had a rough year! Hopefully there are no more bumps in the road, but I can’t say that for sure. The past couple of days I have been experiencing AD, high blood pressure, more spasms etc. I haven’t found a reason “why” yet. Although I don’t like every entry to be about me being sick or in the hospital.

I’m looking forward to a beautiful summer. Except we’ve already had some high temperatures, including the weekend when I got home from the hospital, where the temperature was 93°F with a heat index of 110°F! Yes, I stayed inside; my body takes on the temperature surrounding me since it has a hard time regulating temperature (part of a spinal cord injury.)

Jenni

I love Ambulance Rides

In a continuous blog post from the last one… Last week I had a seizure that lasted 15 minutes, along with 2 two-minutes seizures after. My caregiver called 911 which resulted in another trip to the ER in an ambulance. No lights this time though. While I was there, they checked my blood, chest x-ray, and other things that may have caused them. Although they couldn’t find a reason why, so I only spent 3 days in the hospital.

Unrelated to the above paragraph, every year Sister Kenny holds an art show where people can enter their artwork for sale. You can enter up to 4 pieces of all various types like watercolor, oil paintings, sculptures etc. This year my plan is to enter some of my watercolor paintings, although the deadline is March 17. I’m not sure if I will make that or not because I still need to pick out which ones I want, fill out an application, and upload pictures of artwork.

They also need to be for sale, but all proceeds go back to the artist. I have a collection, but I’m so attached to each one that it’s difficult to part with any. Although my dad pointed out that Picasso didn’t keep any of his paintings, which means I can always paint more aside from what I have in the past. I may just have to wait until next year when I can plan it out more in advance. Then I can create some new paintings instead of using some that I’ve already done. I’ll let you know what I decide to do and share the paintings that I picked.

Jenni

Pneumonia, Again

It’s been difficult these past 4 months. Last blog post, I wrote about being in the hospital due to pneumonia. Early December, I was feeling sick for about a week and spent a couple days in bed. It’s unusual for me not to get up in my wheelchair every day. I had low oxygen along with another seizure which brought us to the conclusion that it may be pneumonia again.

Since I couldn’t get up in my wheelchair, I went to the emergency room by ambulance. I was in the hospital for 5 days. The same pattern continued early January. I was also admitted for pneumonia, but I was in for 12 days instead of just 5. I ended up just going to the ER as it wasn’t urgent enough to go by ambulance. 

I’m always sad to cancel my appointments with ABLE. I can tell how much of a difference it’s making. I have gained a lot of experience and awareness of my body, including balancing upright using my core muscles. Over the past few years, my shoulders have been dropping lower in my sockets. One thing I’ve been doing differently at ABLE is focusing on a new set up to help put them more in place.

Other than the days I go to appointments, it’s difficult to go outside in the winter. This past weekend the temperature has been higher. If it’s above freezing, I start going for rolls with Everett. This week is supposed to be great as well.

Writing poems has taken all of my time up. You know how people are obsessed with Facebook, Twitter, Instagram, YouTube etc. I can officially say that I'm obsessed with allpoetry. Writing them and reading others is where I spend most of my time doing. I posted my recent poem below.

Jenni

Life as a Match

Born from a strike with a story to tell

scarring the wood that it’s made from

crackling through each sparking ember

a voice so fierce and wild with fury

Sharing mysteries from past times

behind shadows where ghosts can tread

the life of a single flame far too short

transforming a stick into lingering ash

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

Rounding Out the Year

On November 26, I was admitted to Methodist hospital for major G.I. problems. They also figured out that I had something called Norovirus (basically like the flu with some of the same symptoms, but worse.) The virus had been going around through my family, but it only lasted about 24 hours or so, making them think that it was just the flu. Since the seriousness of the G.I. problems were so bad, I was in the hospital for 10 days, getting released on December 6. I am feeling much better now, and hopefully I can avoid the hospital.

I was sad to cancel my appointments with therapy and ABLE, missing it 5 times. When I finally went back, I had to take it easy because my body wasn’t used to all the physical work. Now that I’m back to my usual routine, it’s gotten easier every time. I continue to push myself each session, leaving me with the best possible outcome. I’m loving how much I have gained by going to ABLE, including balancing upright by using my core muscles.

Since today is Christmas eve, we are having my sister, her boyfriend and 2 of her 3 kids over for dinner. Tonight, we are having prime rib and tomorrow we’re going to have turkey (basically a repeat of Thanksgiving!) Christmas Day we’ll open presents with them and all 3 kids before we eat. 

This year is unique because it’s a brown Christmas. The few snows we’ve had this year haven’t stuck around. It’s even supposed to rain tomorrow, and temperatures are higher than normal. In 2021, there was no snow on Christmas, but it’s been a little over a century since there was no snow into the first months of winter. Although I have been able to take Everett for a walk most days, which has been nice.

Other than that, I’ve been mostly writing poems. I posted some below that I wrote in the past month or so.

Jenni

[ Soft flakes lightly fall ]

Soft flakes lightly fall

carpeting the ground in white

Winter’s serene hush

A Sunset

A sunset over the lake,

where colors bleed and blend,

a canvas of nature's art,

when time appears to delay

The sky is dyed in hues,

of crimson, gold, and pink

the sun slopes below the horizon,

a moment we cannot miss

Mr. Claus

In winter's chill, when evenings are cold,

a jolly old man with a heart of gold

bringing gifts to children young and old

his name is Santa, his legend bold

With a smile, he rides through the sky,

in a sleigh pulled by reindeer, so high,

they dash across the stars, with a twinkling light,

while Santa spreads joy, on Christmas night

Celebrating Milestones

Looking back, I had no idea how my life would turn out after my accident. At the time I was so focused on surviving that I didn’t have time to think about it. Although my positivity about moving forward has helped in many ways. Big or small, I’ve experienced many ups and downs, good and bad times.

Today marks the 21st anniversary of my car accident. Marking the day of my anniversary has always been a celebration. It’s my way to commemorate living, grateful to be alive after what happened. That also involves the obstacles I’ve overcome throughout my journey, including milestones.

According to an article about milestones in SWnewsmedia.com, a milestone is “an action or event marking a significant change or stage in development.” Whether a milestone is “big” or “small,” depends on the meaning that’s attached to it. For example, milestones could be birthdays, achievements, anniversaries or even a baby’s first steps.

Why is it important to celebrate milestones? It’s good to note the growth, progress and accomplishments that can influence people’s lives. Milestones can be a sign of triumph over challenges and can contribute to developing healthy self-esteem. 

Celebrating milestones isn’t just about having a party, it’s a way to show people that they matter and that their lives have meaning to others. How people celebrate milestones varies. You can even celebrate your own triumphs and milestones. Oprah Winfrey says, “The more you praise and celebrate your life, the more there is in life to celebrate.”

In my case, it includes my anniversary, reminding me of the struggles I’ve overcome afterwords and along the way. Recognizing my milestones gives me a chance to look back and see what got me to this point in life. Another opportunity to think how, moving forward, I want to best serve the rest of my life.

I’m thankful to the people who have helped me throughout the way. This includes family, friends, nurses, hospital staff, etc.

Jenni

What about you? What milestones are you celebrating?

Here’s a challenge: Take stock of the milestones you already celebrate along with some that you might want to add to your life. Why are these milestones important to you? How do you want to celebrate them and who will be included in your celebrations?

What's new?

I’m now a proud aunt to a 3rd baby girl! On October 16, 2023, Emersyn Scott Steinman was born. Sisters Avery, 10 and Madilyn, 3, are happy to have another sister. Now I have another niece to spoil! I shared some pictures below. Also, my birthday was the 19th. I didn’t do much, except have some cheesecake after dinner. I don’t eat many sweets, so that’s a big deal for me. Although I do love cheesecake.

Emersyn and Me

Emmy

Madi, age 3

I’m so glad the pandemic is pretty much over. It’s allowed me to get out of the house more. That especially means ABLE, which I have been working hard at still. I believe being able to go to Sister Kenny twice a week has been one of the most beneficial things for me. Not only physically, but mentally as well. Being able to focus and connect the two is vital, especially for someone with a spinal cord injury. It also feels great to get some exercise.

I remember back when I was talking about how much water weight I had gained, causing edema. After being in the hospital in the beginning of March 2021, I wrote about my progress. The following quote is from a blog post I did August 9, 2021.

“Since being in the hospital to try to find the source of my edema, I’ve lost over 20 pounds of fluid. I guess they were right about my seizure medication being the source of my water weight gain. I feel so much better, and people have been noticing a significant difference as well. There is more fluid that I could lose over time, and I believe ABLE will help with that.”

After weighing myself this past Saturday, I can successfully say I went from 190 pounds before the hospital down to 134 pounds. That’s a total of 66 pounds, and I’m pretty sure most of it is water weight. I’m not trying to lose anymore, as I’m feeling healthier and better. I really notice a difference from the pictures I shared above with Emmy and the ones I shared in 2020 with Madi when she was born.

Jenni

Here are some recent poems I have written:

Feeling Pain

Pain walks into my life

needing more than I can give

no matter how loud I scream

it doesn’t ever want to leave

Like a homeless dog

who comes to the back door

wanting nothing more than help

not able to give it attention

Unlikely to leave me soon

I’m forced to feed it even more

finding a space within me

might take some freedom away

Lights flicker when I leave

any room between the gates

showing just how much I feel

like it will never be the same

An unbearable task at hand

I’ve come to an agreement

I seek for freedom to live a life

where doors are always open

Opening up

Something came into the world,

changing me, broadcasting out

ways I would have never known,

without experiencing this time

Feeling the movement growing

seeing strength outside the plain

breaking open, becoming bigger

I step beyond limitations aside

Using a footstool to reach higher,

diving into an ocean of beauty,

ripples spread, touching others,

giving eyes to see and ears to hear

Shedding away, opening my core

grateful to be alive during this time,

allowing an experience to view

vulnerable sides showcasing time