A "Frequent Flyer"

A walking path in my backyard

I began writing this blog post 7 weeks ago, starting with: “I have written each post this year saying that I had just gotten out of the hospital, although I’m happy to report I’ve managed to stay out of there and at home relaxing with Everett. I did have a UTI the week before Labor Day, but thanks to some quick actions of getting on antibiotics, I was able to avoid it.” In my last blog entry, I stated “… I don’t like every entry to be about me being sick or in the hospital.”

Since October of last year, I've been in the hospital 6 times. That's a lot for me and takes a toll on my body physically and mentally. I also need to miss appointments and ABLE because it takes so long for me to recover after a big stay like that. Despite what I wrote, September 23 I went by nonemergency ambulance. After some testing, they found I had case of double pneumonia. I guess I knew the first day that I went in, but soon my oxygen went down to the low 70s even on 5 L of oxygen and I couldn’t maintain it. After that, they had to slowly sedate me to keep me comfortable because I was having high anxiety, trouble sleeping and difficulty maintaining breathing. I was sedated for approximately 4 days.

In the beginning, they gave me 3 Bronchoscopy’s, a CT scan, x-ray and tried 9 separate IV antibiotics until they found a combination of 3 that finally worked. Also, my lungs needed to relax and heal. They also had to monitor me better, so they put me on one of their ventilators. I was even trying to fight their vent (meaning it was giving me 20 breaths per minute, and I was bringing it to 25.)

From the start, it was just baby steps, 1 foot in front of the other (or should I say, one wheel?) Also, since coming home, I’ve been sleeping a lot; something I don’t do enough of. I know now when my body says “sleep,” it usually means that I need to rest and sleep whenever I can. By resting, accepting help from friends and family, and gradual actions to recover, I have the best plan in place to a speedy recovery. There were signs and symptoms that went on right before, that I now realize to be something to watch out for before things get too extreme.

If you’re reading this and live outside of Minnesota, throughout the summer, Canadian wildfire smoke significantly affected the state. The worst air quality was recorded in late July and early August. Some of them were issued for multiple days at a time. I couldn’t go outside when the air was bad because of my asthma and the fact that I’m on a ventilator. I have trouble enough as it is. Not being able to get out of the house is hard enough but when it is more than a week it becomes depressing.

This past spring I started the process of applying for a new wheelchair. I’m eligible for a new one every 5 years and I’ve had mine for 7 years. It’s a long and daunting process, sometimes taking over a year for insurance to cover everything I need. First, I had to have my Dr. write a prescription. Then, I underwent a wheelchair evaluation with a physical therapist aside my medical equipment supplier. Finally, I selected which chair I wanted along with what I needed it to do.

I ordered it to recline, tilt, legs to raise, change drives (making it speed up or slow down, elevate, and other things my wheelchair now can do and more.) Insurance approved everything so far, except for the seat elevation portion. That’s what allows me to raise my chair up and down. It’s easier for people working to reach my height. I appealed it, but I’m just waiting for their decision.

Labor Day weekend my boyfriend Jay visited me from Jacksonville, Florida. We met through my blog. After his T1/T2 spinal cord injury happened in 2019, he was searching for everything related to SCI’s, and that’s when he came across my blog. He made a comment on one of my posts, I responded, then less than a year later, we fell in love and have been together since 2020. We met in person for the first time, Labor Day weekend. He’s coming on Thanksgiving and Christmas too!

Jay and I in my backyard

According to Wikipedia “The Minneapolis Institute of Art (Mia) is an art museum located in Minneapolis, Minnesota, United States. Home to more than 100,000 works of art representing 5,000 years of world history, Mia is one of the largest art museums in the United States. Its permanent collection spans about 5,000 years and represents the world's diverse culture across six continents. The museum has five curatorial areas: Arts of Global Africa, Global Contemporary Art, Asian Art, European Art, and Arts of the Americas.”

I had so much fun! The last time I was at a museum was for a grade school field trip, and I don’t remember any of it. My nurse and I went, just to do something fun besides going outside, out to eat, to the mall etc. There are 3 floors, and we barely made it through one floor, the 2^nd. My favorite painting was (1 of 4) in Vincent van Gogh’s series Olive Trees. This is a photo of me between Claude Monet’s Grainstack (looking at the photo, on the left) and my favorite painting.

Jenni

Here are 2 of my poems:

Expansive Roots

My limbs are rough, full of brown bark

despite not moving by themselves

they may falter in times of trouble

as my presence in the world matters

 

While my cracks show in harsh winds

delving deep into their structure and use

in my trunk’s importance in this world

proving I matter in the ecosystem

 

My roots are an expansive link

embedded in the dirt of Mother Earth

where I feed my self-worth within times

when I’m strongly supported by my presence

 

I am connected to neighboring life forces

stemming out reaching for provision up top

engaging with my family of surrounding trees

to construct a forest of my ancestries

 

With every breath I stretch into the clouds

as my experiences in life are deeply felt

although I have a few tangles to work out

with each year adorned with a new ring

 

My protection is my bark and layers

covering me so you can’t see

any of my tragedy or loss I’ve endured

that comes with being a dead tree

Canadian Wildfires

The city groans as it chokes on dust

exhaling gray, drifting smoke

hazy skies and air-quality alerts

obscuring the sun, covering towns

Like a curtain dropping from the sky

Canadian wildfires pollute Minnesota air,

strangling every tree in sight

spreading freely through dense conifers

A silent hold upon the once crisp atmosphere,

outdoors is forbidden for weeks

difficult to contain, as health is strained

harder for asthmatics to breathe

Embers sweep into drought-stricken fields

delicate lungs copiously cough,

hushing children’s play through the disorder,

as orange flames leave farmers at a loss

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

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

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

Newest Update

Since my last post, I was back in the hospital for another respiratory infection. It wasn’t pneumonia, but it was bad enough for me to be admitted. I went into the emergency room and was admitted on August 5, then was discharged on August 9. They sent me home for 2 days then I was back in the ER on August 11 for 6 days. The reason I went back into the hospital was because my mom, nurses, and I all repeatedly told them I wasn’t ready to go home, but they kicked me out anyways. 

Before leaving, I was still feeling sick and having all the same symptoms. Although the hospital said, “they recommended that I continue current antibiotic measurements and that I could do that at home under the supervision of my nurses.” I’m feeling much better now and have been healthy since. I went home with a PICC line (it’s like an IV, but it is a type of catheter to access bigger veins.) It can also be left in for a longer period, but there is a dressing on it and needs changing once a week (mine was by the crease of my elbow.)

One thing that happened this time is I also had issues, although it wasn’t with my wheelchair, but my ventilator attached to my wheelchair. My vent plugs into my wheelchair which charges it and is also like an “external battery” for it. The vent internal battery lasts about 30-40 minutes and when it’s running off my wheelchair, it lasts as long as my wheelchair battery is. At some point at time while I was there, my vent started beeping “low battery,” so we used the plug-in to the wall instead.

Before I went home, I had to have the wheelchair company come to the hospital to figure out if they could fix whatever was broken. He found that the converter box (a black box that the wheelchair battery and ventilator battery plug-in to) was crushed. I’m sure at some point when I was repositioning in my chair, I must have leaned into it. Then, over time the box continued to break down and it chose that moment to quit working. Anyway, at first, he said they would have to order a whole new one, but then she was able to fix it on the spot. About a week later, someone came to my house and replaced the box.

Since being home I’ve been staying low key, writing poetry, getting outside, taking Everette for walks. I’ve also been continuing to go to ABLE whenever I can. Nursing lately has been a little spotty and it doesn’t work to go on days when there isn’t one. The best part about going is learning new things and gaining more movement. I took a video of my latest progress and will share it in a separate post. I'm always amazed at myself and have been told that by others.

If everything works out, I will continue to go there as long as I can. Nothing can stop me from reaching my dreams. Over time I have gained more arm movement and core balance. The one thing that stops me short on some days are my arm exercises. I get major pain in my neck and arm sockets. It could be a combination within the arm exercises and my wheelchair. I’m planning on seeing a doctor about my arms coming up soon.

The most exciting news since my last post is that my sister is due again in October. Now I will be an aunt to 3 girls!

I am hoping to update sooner than 4 months, as my posts have become longer and random. Although every day I’m new writing poems and entering them into contests. I have shared some of my recent ones below. Thank you for your patience.

Jenni

Natures Grace’s

Sunlight dances piercing through cirrus clouds

rays of light shine causing shadows to scream loud,

Like molten cream the sky is full of many hues

emitting molecules scattering violets and blues

Feeling a heaviness lumbering tirelessly through

evergreen trees that stick together like glue,

Strong roots run deep entangling underground,

sending secret messages beneath the loamy ground

As brisk breezes brushes across center retrieves

running its fingers between the crimson leaves

Lifeforms unpredictability like ribbons of sound

breathing in the crisp air from oxygen around

Times when there are changes between seasons,

with lessons at the same time as life’s reasons

Tapestry of nature whispers secrets in the streams

carrying them around Earth’s beautiful bright beams

Crossing an Intersection

At an intersection to cross the street

when the light turns green “what should I do?”

I’m in a wheelchair trying to be discreet,

I wish I could walk when the sign tells me to

There is no wheelchair symbol flashing,

just words saying “walk” or “don’t walk,”

when I see that I just start laughing

there should be a voice that starts to talk

Wondering what people would think,

if there were words saying “roll” or “don’t roll,”

they might get a kick or need to rethink,

maybe they’d get confused or lose control

Figuring out how to have it both ways,

for walkers and rollers lessening the confusion

there could be a custom-built phrase,

saying “cross” or “don’t cross” for inclusion

Who is following me?

Getting smaller as I charge for it,

growing taller as I walk away,

constantly creeping beside me

lurking in my every movement

Shifting shapes in the sunlight

dimming within the moonlight

learning to accept the fact,

that I can’t get away fast enough

Feeling fearful and empty inside,

it always has a hold of my sight,

despite all the dark there is light

behind my shadow to show itself

What have I been up to?

Hello everyone!

I have lots to share. The biggest news is that I got my cast off my leg last week. I went in and my orthopedic doctor took my fourth cast off, then I got an x-ray. She said that it’s healed enough that if I was walking, she would recommend me to start bearing weight on it. Hopefully nothing else will happen to it or any other of my bones that would cause setback at ABLE. I’m going back in about a month to get another x-ray to see how it’s healing.

If you’re reading this and are not from Minnesota, the weather here has been cold for October. It’s supposed to be fall, although it was so cold this past week that it snowed. Good thing it only lasted the morning and then warmed up during the middle of the day for it to melt. I wasn’t taking Brody out much because of the weather and the cold, except for today.

I’m still perfecting my poetry writing (thus the reason why I haven’t blogged much lately.) I also haven’t written much for my book. I believe the imagery and metaphors I’m using will help in my book. My mom and I did an interview today for the Morton Cure Paralysis Fund and it will be a YouTube video coming soon. In my last post, I shared their first video. I’ll post the link on my blog when it becomes available.

I’m hoping to write more blog posts about other things than just updates about me. 

Jenni

Here are a few more poems I’ve written:

Hiding Behind the Clouds

Two clouds pass another on a wisp of wind

revealing a ball of fire showcasing its rays

casting shadows on the earth below its plain

Moving swiftly, beautiful, and bright

diverging left then right without a word said

peeking into different lives from far away

Unlocking the key to an ancient mystery

accessing countless times of troubled pasts

sifting through a treasure trove of memories

Holding visions while trusting processes

powered by motivation to seek answers

the two clouds produce inspiration from above

A Scene from Heaven

Numerous colors paint the forests’ floor,

as hummingbirds flutter in the distance

and frogs croak on sunlit lily pads

warm breezes wander between flowers

Wind whizzes around dark tree trunks

shadows appear amongst overhanging limbs

between the kiss of falling leaves

glimpses of patchy sky seen breaks through

The vibrant trees stick to their boundaries

casting show stopping colors on the flowing river

that rumbles through the path it’s created

picking up every evidence of being there

If October never existed

No days so still, so kindly sincere

such reverential quietness in the air

Voices so crisp with integrity

Leaves switch to yellow, orange, and red

Gold in its pocket full of recollections

reminding me of ambient occurrences

Times so pleasant as a fine October

if it never existed, I wouldn’t be alive

as my birthday lands on the 19th

When the light is sweet and heavy

permanence takes its bitter shape

folding amongst natures hugs

Another Update

I’m still recovering from my spiral fracture on my right leg. I have gone to the orthopedic doctor three times so far since it happened. The first appointment was an x-ray and to put my cast on, then they wanted me to return in two weeks. The second one they cut my cast off, took an x-ray and said it needed a few more weeks. So, they put another cast on and wanted me to come back in three weeks. When I did, they took my cast off and took another x-ray, and determined it hadn’t healed at all from when I first fractured it. 

They put a cast on again and told me to come back in another 3 ½ weeks. It’s been a little over a week since then, so I’m not sure what to think when the next appointment comes around. Hopefully it’s healed at least some, because the next option is to put pins in to hold it together, so it heals faster. I’m not looking forward to that, if that’s the case. I’ve been modifying ABLE avoiding exercises that use my legs.

I also have been using a lift to get me out and back in my chair instead of manual transfers. When I first started, and they told me they were going to do a manual transfer, I was scared. I’d never transferred that way before I have only used a lift. It was going good until my last two injuries on my legs (bursitis in my right knee, and the spiral fracture I’m still healing from.) Using a lift does take longer than manual transfers, although it’s a safety route.

I’m praying for no more injuries! Other than ABLE, I’ve been getting outside as much as possible. Unfortunately, Brody isn’t feeling all that great. He wasn’t eating well for a few days and wouldn’t let anyone get close to his mouth. He went into the vet to get his teeth looked at. They said he has a lot of tartar, gingivitis, a loose tooth, cracked teeth etc. So, because of his bad teeth. In September going to have surgery and have multiple teeth pulled along with a deep clean. We’ve now been soaking his food in water, and he’s been loving that.

Now when I take him out for walks, he doesn’t like to walk the whole way. When he stops going and just looks at me, I put him on my lap. He lays down and then I go as far as I want! Although, the temperature outside has been quite warm and humid lately. It’s hard to go too far and I try to stick to the shade, so I don’t get to warm. That’s one thing that’s difficult about being a quad; when it’s cold I’m cold and when it’s hot I’m hot. 

Since we are approaching August, usually temperature in Minnesota only gets warmer. My favorite time of year is fall, not just because of the weather being cooler, but the leaf color changes are nice to look at. My sister and niece, Avery have birthdays this month. I always look forward to buying things for other people, especially for holidays.

As I said before, I've been on a binge of writing poems. I write one almost every day, mostly for contests on the site: All Poetry you can check out all the poems I've written by clicking on the link before this. Although others I've just posted for people to read. I thought I would share more of what I've written within the past couple months. 

Feelings of Hope

Letting my emotions flow within my veins, 

like water seeping through cracks in wood.

Enlightening me to share my sense of calm

with others until dawn meets the horizon.

Silence echoes across open land in sight,

while my mind reaches a height of stillness.

Beneath my feet feeling single grains of sand

navigating their way through open valleys.

The wind finally rests as thoughts of healing

begin to enter the realm surrounding my being.

Change

Within a moments time, 

my body changed like a 

caterpillar transforming

into a striking butterfly.

Life throws curveballs

letting me know how much

it can push itself, until

my breaking point. For the

instances that I am lonely

are far too many to count.

There are times in my past

where I felt like giving up,

because it’s easier than dealing

with being paralyzed from the 

neck down, on a ventilator.

Like a puzzle, I just pick up

pieces of my broken body,

slowly putting them back

together. Realizing that my time

here on earth is worth living

to its fullest. Despite my troubles

where I’ve slipped and fell, the 

path to my destination is clear.

My spirit flickers a faint light,

like a candle in a slight wind.

Since my near-death experience,

I now realize that the loneliness

within my mind has dwindled.

Changing pages has given 

me a chance to gain confidence,

preserving a future to survive.

By stepping out from behind the

shadows, I grant myself permission

to share my story with others.

Breathe In

Within two decades of moments lies dangerous

thoughts of reacting to a future unknown

Emotional insides twist with anticipation as feelings

inside my paralyzed body seize on-demand

Affecting my ability to move amongst beings

as every effort beyond has a cause with no feeling

Showing loneliness upon difficult times of struggle

like being on a ship with no lifeboat aboard

In spite unimaginable living in shadows of pain

stricken underneath me like light turning to dark

I now realize my past hatred of a time troubled accident

has dissipated into the air I breathe through my vent

Reminding me of myself despite my tight grasp

binding down at this moment however looking afar

What I’ve now become although whom I will be later

surrounding happiness above distant thunder clouds

Springtime Wonders

Blue sky shows above as the rays of sun shines on my face 

feelings of glow as the wind whispers in my ear ever 

flowing through the trees as the next season appears

all around as soothing scents of lilacs, hyacinths, and daffodils

start to grow in the ground and buds began showing

it is as if the world is telling me to be silent 

while the red cardinals flyby singing to each other 

with their sweet sounds of whistles flow amongst

my shoulders become relaxed as I feel a sense of calm

through the change of seasons while white winter wonderland

begins slowly disappearing as the temperature raises 

melting the snow away beginning to showcase spring 

blades of grass poking through the old crackled dried up

dead brown leaves laying in a bed below from last fall 

all seasons showing their stories right in front of my blue eyes 

the smell of petrichor produced by wet rocks after

raindrops fizzing as they splashed down caring an aroma

fills the air which makes me sneeze because of allergies 

although the light breeze slowly floats through leading it away 

while new spotted white fawns begin to show themselves 

their mothers protecting them when strangers come near 

showing them the ways around how their life is supposed to be 

while dad with pointed racks of antlers watches for predators 

that come near as the snow-covered water frozen from 

low temperatures, starts to melt opening-up as water begins

flowing making space for green mallards and geese finding 

their mates, other animals able to drink swiftly as the sun gets higher 

opening sky as its warming the nature in every corner 

the crickets make their calling, the bees start buzzing 

the black spotted red ladybugs land on my arm tickling me

My Knee… Again

Madi and Brody

So… I injured my right knee again. This time, it’s my actual knee that is twice the size as usual. I got an x-ray Monday and saw the orthopedic surgeon earlier today. Based off the results, my primary doctor said “there are no new fractures, although there is a new moderate knee joint effusion. There is a fair amount of fluid around the knee.” He highly recommended that I go to the orthopedic urgent care yesterday to get it evaluated.

Although, since there was no fracture, just fluid, it means that I probably injured it somehow or something to that extent. I decided to make an appointment to see the orthopedic surgeon today instead of waiting all day in urgent care. It would be first come, first served basis so I wouldn’t know how long I would be waiting there. It would all depend on the other people and their injuries who came in.

I think it happened on Friday during ABLE. I’m not sure exactly; could have been during a transfer or an exercise I was doing. Even though I have limited feeling, my knee started hurting that night. That’s also when the swelling started. Also, when there is a pain somewhere within my body, it reacts by muscle spasms in that area or location.

Before I got the results from the x-ray, I thought I had fractured or broken something. I thought the size of my knee was just fluid and a little swelling. The whole weekend I was alternating between ibuprofen and Tylenol along with icing it every hour or two for 15 or 20 minutes. I googled “how to keep swelling down in knee” and this was the result it told me to do. My nurses working also said it would help.

My appointment was at 2 PM, I used transportation to get to my appointment, and I got there about ½ an hour early. I waited, and they didn’t call me to a room until 2:15 PM. My ride was set up for 3 PM and the doctor came around 10 to 3. I was worried I wouldn’t make it before that time, but it literally only took 10 minutes for the doctor to explain what happened and what to do about it.

To sum it up, he said that the fluid would simply “go away and heal itself” within 3 to 4 weeks. He also said that I could do “mild range of motion on my right leg, depending upon how it feels.” Also, according to him, “I can go back to ABLE within a week or two depending on how it’s healing.” This was all great news to me, but I wish it could’ve been over video and instead of waiting so long.

Before COVID, appointments were strictly visit only. Now a lot of them are either over the phone or video, depending. I like that I have the option to choose, for convenience of course! These days it’s a little bit harder to get out of the house for something they can easily be done at home.

Writing my book and poems is still consuming a lot of my time. I was wondering, would anybody be willing to be interviewed for it? I’m looking for prospective along with stories and dialogue. Just email me at jtic20@gmail.com.

Jenni

News about ABLE

After my appointment almost 3 weeks ago, my orthopedic doctor told me that based on the x-rays, my knee fracture is healed. Even though it still hurts, he said it’s probably from the torn meniscus that happened back in 2019. He gave me a nice knee brace to wear. If it doesn’t feel better in a few months, he wants me to repeat an MRI on it to make sure everything looks okay.

The only problem is, if it is still my torn meniscus, there is no way for it to heal unless I got surgery on it. The only reason I would get surgery is if I was using it a lot, which I’m not. Good news, I was able to get an assessment done at ABLE almost 2 weeks ago. Bad news, they filled my spot Wednesdays and Fridays. Although they were able to squeeze me in with my same person every Wednesday from 1 PM-3:30 PM.

At least one day is better than nothing at all. Plus, I’m just slowly easing back into it since I haven’t been there in at least three months. Last Wednesday was my first day back. I was able to start back right where I left off which was good. At least I didn’t have to start from the beginning. That would mean losing any of my core strength or movement that I gained previously. Although I was sore and tired after my first session back!

Hopefully I will be able to gain another day during the week, even if it’s with a different person. Even though it feels better to stick with the same people because they know the routine and the process goes smoother, I’m open to change. Years ago, and even sometimes now (depending on the situation), I wouldn’t be able to say that. Anyways, I’m happy to be back there again because I really missed it.

Now that there’s snow on the ground and it’s colder, I haven’t been getting outside as much, unless it’s to an appointment. Other than yesterday, Brody hasn’t gotten his daily walk and rolls like usual. I’ve been trying my best to do things other than just watch TV. Listening to audiobooks, writing my book, playing board games with nurses, and wrapping presents are just some examples.

Jenni

Fall Update

I will be getting my booster COVID Vaccine, and my flu shot December 1. I also contacted my doctor about getting a new set of x-rays for my left pinky and knee. I’m hoping my hand is all healed up, so I don’t have to wear the brace on it anymore. Also, it’s been a long time since I injured my knee. Last time I got an x-ray of it they told me it was no worse but no better.

I really hope it has at least gotten better because if it doesn’t heal quickly, I’m afraid I’ll lose my place at ABLE. I miss going there, getting some exercise, and making progress. Since my accident, I never thought I’d be able to do as many things as I’ve accomplished since starting the program. It’s important to me that I keep it up, especially because I felt a sense of independence and new strength since I started.

Last Sunday my power wheelchair stopped working. I couldn’t drive it, or re-position and an error code flashed across the screen that I look at to operate it. Based off the code, the company I use for equipment was able to try to figure out what was wrong with it. They thought it was the motor which would take 7 to 10 business days to order a new one plus the time to replace it and get it back to me. They took my wheelchair on Tuesday and left me with a crappy, loaner manual wheelchair.

Although they figured out within a few days that it was just a faulty wire on a control panel. The company was able to bring it back to me Thursday late afternoon. Since independence is so important to me, being without such a vital part of my life was very difficult. Because it wasn’t fitted for me, I was only able to spend roughly 2 hours in the loaner wheelchair on Wednesday morning. Thursday morning, I got up in my shower chair for an hour.

I spent the remainder of the time in bed, trying to reposition as much as possible so I didn’t get sore or uncomfortable. I realize how lucky I am to be able to move about and get out of bed every day. There was a low point in my life when I didn’t want to get out of bed for a few days, because I thought to myself “what’s the point of getting up when I’m just going to get back in bed again?” I’m glad that others intervened and got me out of that state of mind. 

It’s been five years already since I got this wheelchair. That’s the point when insurance will cover a new one, so I am in the process now of pursuing that. It took a year and ½ to get the one I have now after starting the process, so I’m guessing it will be about the same for another one. That’s why I am starting the process now.

Now that I can be in my wheelchair, I’ve been going for a walk and roll outside every day while I’m still able to. The weather is getting colder, and snow is on its way! I do take Brody out in the winter, even if there’s snow outside although only if the streets are clear. Hoping to go more places soon other than just the doctor’s office; it’s just difficult if there are a lot of people around. Maybe the mall is the best place because I can stay away from others.

Even though Christmas is 1 ½ months away, I’ve already been looking for gifts online. I prefer to shop online more than the stores because I can find what I’m looking for easier. The best time for me to order things is on Cyber Monday. Although you never really know how good it is unless you look at prices beforehand! I think Black Friday, especially for someone like me, is crazy. People wait in line for hours to try to get the best “deals” and fight over others. Also, you never really know how safe it is since COVID still exists.

I’m still plugging away at my book. Since starting to write it myself, I think it’s best this way instead of having a ghostwriter. I have found a groove and style of writing that I want it in. Hopefully I will be finished writing by next year and then I can find an editor to help me. It depends on how fast and how much time I invest into it. I believe I already written almost 10 chapters, but don’t know how long the book will be yet.

Jenni

Update

Things have been going great at ABLE. After only seven weeks of intense working out twice a week, I now can sit on the side of the mat unassisted and move myself side to side and back-and-forth (almost like a sit up, only not while laying down). Also, if someone pulls my right arm forward on my armrest, I can pull it back by myself. These are all new things that I couldn’t do before ABLE. I’m very excited with my progress along with newly gained strength and can’t wait to see I can do from here on out. I posted some videos below.

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.

At the beginning of this month, I went to the orthopedic surgeon to get both of my legs checked out. Since I injured my left knee in the middle of 2018, it healed up for about a year after wearing a knee brace but has been bothering me for the past year. At the beginning of 2019, I fractured my tibia on my right leg. A couple weeks ago while doing ABLE, I believe I reinjured my right leg somehow. I’m not sure which part is injured I just know that something is not right about it because my leg spasms and was bruised. It also won’t straighten out.

After getting to my appointment, I had to wait 50 minutes to see the doctor. I talked to him for roughly 15 minutes for him to tell me that in order to see what’s wrong, that I would have to get an MRI and x-rays on both legs. Exactly what I thought before going to my appointment. Then I waited 45 more minutes for my transportation driver to come bring me home. I thought it was a waste of time, but then again, he had to check it out in order to make his decision.

The soonest I could get an MRI was 19 August. I have a follow-up video appointment with the orthopedic surgeon the second week of September. I’ll post an update after I get the results and whatever action he wants to take going forward. I also have an appointment with my pulmonologist at the end of this month. It’s just one of the yearly visits I need, just like a checkup. I usually have them for most of my doctors, either yearly or every other year. I have so many doctors for every need that I can’t even count them.

My family has been doing good. My sister’s birthday is August 11 and oldest niece’s birthday is August 16; she will be eight years old. My other niece will be 1 years old in October. Oh, how quickly they age! Other family birthdays will be coming up in October as well, including mine. Also, I have been getting outside and taking Brody for walks as much as possible. Although the temperature these past couple of months have been in the 80s and 90s with high humidity, which makes it a little and comfortable.

Avery and Madilyn beginning of July

That’s all for this month’s updates. I will update more next month as things progress.

Jenni

First Session at ABLE Program

I had my first session at ABLE yesterday. My mom was able to drive me in our van and pick me up. Sometimes I will use transportation, but for the first session it was good getting the feel for how much time I needed, including drive, transfer and session. When I got there, I saw that there were two physical therapists that would work with me at a time. Then the main PT talked to me about which two exercises I was going to do, and then went through a plan of the order and how long each one would take I would do. 

Using the Bicycle

The first exercise I did was called guided exercise. They transferred me to a bench and laid me down on my back. Then they strapped my feet to pedals like on a bicycle, although my legs were bent upwards. The therapists stood on each side of me and moved my legs simultaneously like I was peddling. After about 10 minutes, they strapped my arms up and as they moved my legs, my arms moved at the same time as my legs. Overall, I did it about 17 minutes, although in the future the goal is 20-30 minutes.

After this, they transferred me back to my chair and I repositioned it alongside a table mat. Then moved me to the mat so I could use electrical stimulation. They put electrodes on my abs, obliques, lower back and between my shoulder blades. After hooking them up to a machine that made them stimulate, the PT started with firing each spot separately until I could feel it. Then made them all go simultaneously, which made me spasm and worked my muscles. I did this for about 40 minutes, but the goal is 60 minutes total.

At the end of the session, my nurse said that before I went, she was nervous about how everything was going to work out. Then, the PT admitted that he was too, especially because the center had never had someone on a ventilator do any of the exercises before. I was excited but also a little bit nervous. Mainly for the fact that I wasn’t sure if everything would work out okay and if I would have the stamina to complete everything.

I’m glad I started and stuck with it, because everything worked out great! It took a while for me to get situated with each exercise. Next time, I’m planning on getting to Courage Kenny about ½ an hour earlier so that I have time to get through every exercise goal. After everything, I was very tired, and was exhausted as soon as I got back in bed. I slept while doing range of motion and even 30 minutes after. Usually, after I transfer into bed, I start range and it takes about half an hour and then I sit up and go on my computer for about an hour in half.

I am very hopeful that after the first six weeks session that I will have improvements in overall health, fitness, strength and possible feeling. One of the biggest goals is to gain movement. Although I may have a while until I get to that goal, I know with some hard work and dedication, that day will come.

Jenni

“Strength grows in the moments when you think you can’t go on but you keep going anyway.”

-Anonymous

ABLE Program

The other day, I went to Courage Kenny center for an assessment. I was there for four hours, from 12 PM-4 PM (not including the drive there and back). They have a program called ABLE there that helps people with certain types of disabilities. They are brain injury, cerebral palsy, multiple sclerosis, spinal cord injuries, stroke and other neurological diagnoses. The program of exactly what they do is described in the next paragraph in a quote taken from their website:

“If you are living with paralysis or a neurological condition, the ABLE: Activity-Based Locomotor Exercise Program, may help you. ABLE is based on the most up-to-date scientific and clinical evidence. It’s designed to speed up recovery after a spinal cord injury. The objective is to help your brain and spinal cord relearn motor patterns associated with standing and walking. The ultimate goal is to increase your mobility and improve your health.”

The Treadmill

In my assessment, the PT and OT first brought me into a room that had a treadmill in it. They told me that if I were going to do it, I would get up into a harness and onto the treadmill. Then they have people who would assist me in walking on it. I decided I would wait on getting up on the treadmill because my ventilator tubing (8 foot) wouldn’t reach from my chair to me standing on it. I knew this for sure because I had an assessment a couple of years ago and tried but it wouldn’t reach.

Then they brought to me into the assessment room and first asked me a bunch of questions. Most were on a scale and included questions about my history, feeling, movement, activity level and many more. Then they transferred me to a memory foam chair. First, they laid the chair back all the way, took my blood pressure three times in a row, and then sat the chair up fast and took my BP 10 times in a row. They wanted to see how my BP would hold up in an upright position. My BP went down slightly, but not enough to where it was concerning. This was important because since I have a spinal cord injury, my BP usually is on the low side, and I need to take medication for it.

After this, the OT took measurements of me and then tested my movement. She had a device that beeped when something pressed against it. It’s a way to measure movement based off if it made noise, how long the beep was and how hard the pressure was. Out of all the places they tested, I was able to make it beep once when I tried to pull my right arm back. After doing the program for a certain amount of time, they will revisit this test to see if I’ve improved on movement.

In order to check my balance, they transferred me to a table mat. I sat up on the edge of it to see if I could sit up without assistance. After being held for a few minutes, I was able to balance myself for about 15 seconds. I used to do this with my physical therapist on the edge of my bed. Also, they checked to see if I was able to use my ab muscles to pull myself forward and back muscles to pull myself back. I was able to fire my back muscles, but not the front.

Table Mat

The last thing they did before transferring me back to my wheelchair was had me stand up. There were 4 people that helped, one in back holding my backside, one in front holding my knees, and 2 on each side of me grabbing under my armpits. Simultaneously, up I went for about 10 seconds until my left knee buckled. It still hurts a little sometimes from when I injured it a few years ago standing in my wheelchair. Although I've been wearing a knee brace at night and that's been helping.

I believe in this program and have proof from a friend of mine that’s in it that it works. His injury is below mine and not on a vent but is paralyzed from the shoulders down. He’s been going there for over three years and has gained a lot more movement than he had before. He used to use a sip and puff to drive his wheelchair like me, but now he can move his arms enough to drive his chair with a joystick. He also said there were other people who have gained more movement since starting. These are just a couple examples of the benefits that the ABLE program has.

Overall, it was helpful to do the assessment to see where I’m at now and how far I can advance in the future. When I start, I will be getting on a regular schedule of twice a week, for 2 ½ hours at a time. If I were going to do the treadmill as well, I would be there for longer. The first session is for 6 weeks in a row and then they will assess me again. I can’t wait to see how much I progress over time. I’ll keep everyone updated as time passes!

Jenni