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

Visit to the Hospital

Two weeks ago, I went to the Emergency Room because I was feeling short of breath, my oxygen was low, and I was having to be suctioned more frequently. They did a chest x-ray along with blood work. The ER doc looked at my x-ray and thought I had a mild case of pneumonia. My white blood count was also high, which could coincide with an infection. He put me on a week’s dose of an oral antibiotic.

Despite being on an antibiotic, last Wednesday I started getting worse. I decided to take another trip to the ER. Based on the symptoms I was still going through and results from different tests, this time they decided to admit me to the hospital. I was in the ICU for a day and ½ then transferred to a different floor. The reason they admitted me, was so they could give me IV antibiotics. Much more powerful than oral ones.

My nurses come into the hospital with me and sit by my side. Although they can’t do anything “nursing related” they can help me with things I need at bedside, along with conversation. Since the hospital is so busy, they can’t exactly assign an aid to sit in the room with me and help with all my needs. If I don’t have someone that can be there all the time, I’m stuck by myself with nothing to do.

Also, my family helped as well. There’s nothing worse than being away from your own things and environment. Whenever I admitted to the hospital, I end up bringing “everything but the kitchen sink.” In other words, packing and getting a lot of things from my house. My mom even brought me some food as ordering the same thing at the hospital can be boring.

I received more tests, pricks in my arm, blood draws, a pic line placed, along with the antibiotics and rest. I’m glad to say I bounced back quickly and was discharged from the hospital this past Saturday afternoon. After getting in my wheelchair and about ready to leave, I noticed something very critical. Within all the chaos, I forgot to bring something that would’ve been very helpful: my charger for my wheelchair.

When they turned it on, I realized it was completely dead. There was no way I was able to drive myself out of the hospital. My wheelchair can be put on a “manual mode” but it’s very heavy to push (more than 500 pounds with me and it.) Plus, there was the added maneuvering around corners, through doorways, elevator, van, and into my house. My wheelchair was facing the wall, so I sat there for 15 minutes before deciding to have them turn me around manually to at least watch some TV.

After about 30 more minutes, they turned my wheelchair on, and I was able to drive it. Although we figured out that it must’ve come unplugged when they turned me around because I had just enough juice to get in the elevator and to the waiting room. So, I had to stay in the waiting room for about 40 minutes while it charged. Luckily, I was in a bigger space with windows surrounding me. With that amount of time, I could drive myself into my van and get situated.

Although, by the time I got home, it was dead again. I was in the driveway with my wheelchair plugged in to outlets on the house using an extension cord. Figuring it would take another 40 minutes of charging, when it was unplugged, the battery was still dead! My aunt, Sandy, and my mom just put it on manual and got me into my house because I didn’t want to wait in the van any longer. Regardless, I was discharged around 2:30 PM and got in my house close to 6 PM. It was a long day for everyone.

Despite everything that happened, my health is back to baseline, and I feel 100% better. I even went to ABLE yesterday and am also planning on going tomorrow. Hopefully I won’t have any more infections, although my allergies are acting up because of the weather. The smoke from the fires in Canada are making our air quality bad, which makes it impossible for people with “breathing problems” to go outside.

Jenni

Recent poem I wrote for a contest about joy or hope:

Strangers Bring Hope

Fresh flowers placed on a someone else’s grave

showing others care for strangers in need

helping to open all the doors that are closed

bringing hope to those who are mourning

Symbolizing the frailty of one’s lifetime

bouquets representing condolences and grief

a form of ongoing memorialiazation to them

leaving something in their honor to remember

Reflection

Reflection

It’s been a busy month. As usual, we have had some snow days in April. Some have even prevented me from going to ABLE. One day we went from 80°F to the next day of 30°F. I guess that’s Minnesota for you though. We’ve also had some flooding of rivers and lakes. Even though all the snow has melted, it’s still in the low 40s. I’m not sure what the forecast looks like over the next couple of weeks yet, but we may still get more snow.

At least when it was nice for a while, I was able to take Everett out for walks. He’s been coming in to his own this past month. He still needs lots of attention and to be taken outside on leash. I haven’t quite gotten to the point where he listens to me, but I know that will come soon enough. It took Brody a couple years and to be hooked up to my wheelchair. He is a great dog, although needs some training still. He’s going to go for a “vacation” at the trainers’ house for 4 days starting tomorrow.

I’ve been reading audiobooks one after the other to and from appointments. I’ve also been keeping busy by writing more poetry. I pasted some of my poems I recently wrote below. I put writing my book on hold for a while. The format is good, but I need to write more content and that will come in time.

Jenni

The poem below is written for a photo contest based on the one at the beginning of my blog post.

Reflection

Across the river by the golden valley

stands a tree with limbs of certainty,

all gravel roads race to picture it

sunrays arrive to highlight its arches

Shapes and patterns come and go,

embracing the grooves in its bark

leaves stretch showing their veins,

while water droplets reflect light

Curving round its extensive branches

squirrels scurry to their leafy nests

whispers of the dusk draw near

all shadows from the tree disappear

Trapped

I'm like tiny bugs

caught in a spiderweb

Mind trapped in a

body that can’t move

Taking time to heal

within this brokenness

Feelings After Survival

After crash landing in an open minefield

I’m losing the struggle to regain survival,

as shadows cross my path to take me up

waiting for the hardest hours to come

Unable to bear the demons I face,

whispers of the air pass through me

tiny voices share secrets from hidden pasts,

opening canals like passageways afar

Subtle changes behind pain and agony

realizing there’s more behind the masks,

that I put on creating false representations

immersing myself beyond recognition

Now intertwined like the roots of a tree,

sinking further down feeling grounded

connecting myself deep into the earth

anchored keeping me straight and solid

Everett

Everett before I got him

After I had to put Brody down, I knew I would want another companion dog. The question in my mind was always “when.” It was more down to if an opportunity: fell into my lap like Brody did. He didn’t make the cut to be a show dog. I was talking to the breeder of Brody, and she said she would put some “feelers” out to see if the same type of opportunity would happen.

Her daughter, Audra, knew a breeder that had a girl puppy that they were already going to get trained as a therapy dog. The plans for her were to take her to a nursing home to see how she did around that type of environment. When I heard this, I immediately wanted to learn more. Unfortunately, it didn’t work out because when they brought her to the nursing home, she was deadly afraid of wheelchairs. It’s hard to say whether she would be afraid as time went by, since she was only 13 weeks old.

A couple weeks later, Audra knew another breeder that had a litter of puppies that were around 8 weeks old (this was 5 weeks ago.) Before having them go to families, they had to get tested to see if they would make the cut to be show dogs. Out of the litter, only a couple of them “potentially” could be show dogs, and the rest could go to homes. After learning about my situation, the breeder with the pups had one of them that is very loyal, independent, and smart.

I was instantly entertained by the idea of getting a new puppy. After figuring out the logistics, I decided to get him. His name is Everett, and he’s as cute as ever! I decided to keep the name, since he responds to it. He went to a trainer’s house for 10 days (a week from Wednesday.) The trainer brought him to my house on Saturday. Since he’s been here, he’s been learning a whole new routine.

His favorite thing to do is give kisses! He loves lap time with me and is even getting used to my wheelchair. I have taken him for one walk with me but haven’t hooked him up to my wheelchair, like I did Brody as he hasn’t quite got the concept of walking on a leash. Also, I don’t want to run him over either. Although Sandy has taken him for walks several times although he kind of just walks all over the place! Since he’s only 13 weeks old, he has a lot of learning yet to do.

It’s going to be trial and error for the next few weeks as we both learn a new routine. He is so sweet and very loving. He’s working on “crate time” and basic commands. Each day is a new one, and as long as I’m consistent, I know he’ll be a fantastic companion dog for me.

One interesting fact is that he’s related to Brody. Brody’s dad is his great-great-grandfather! Somehow his breeder figured it out. He also acts like him too, by just lounging over his bed like the picture above. I'm going to get him registered as a companion dog so I can take him everywhere.

Jenni

Happy Valentine's Day

Valentine’s Day originated as a Christian feast day honoring a martyr named Valentine. Through later folk traditions, it’s become a significant cultural and commercial celebration of romance and love in many regions of the world. On Valentine’s Day, people on average usually spend close to $200 per person. It’s expected that Americans plan to spend nearly $26 billion today. If money could buy love, couples might have the most successful romantic relationships.

Around 145 billion Valentines cards are exchanged every year. Even kids in classrooms exchange Valentine’s Day cards. I remember when I was in grade school, handing out cards to every kid in my classroom and eating candied hearts with words on them. I’m sure that still exists to this day. That’s along with heart-shaped boxes with all sorts of different flavors of chocolate pieces inside. If there isn’t a paper that tells you what’s inside, you need to guess which flavor each one is by tasting them.

Although it’s only celebrated by about 50% of Americans, that’s still enough for places to keep producing cards and gifts for it. Even fresh-cut flowers are given as love for someone. Every year, my mom even gets me Valentine’s Day cards, along with putting sweet treats for my nurses and PCAs. I don’t eat sweets anymore; I prefer salty foods instead. Along with me not craving sweets, I’m allergic to pollen so flowers are out of the picture. 

Thoughtfulness trumps splashing the cash. What does your sweetheart love? Kind intentions. Most people prefer a gift that shows thoughtfulness and an understanding of the recipient’s favorites, hobbies, and preferences. You don’t need to spend thousands of dollars on jewelry to show your loved one they are priceless to you. Be mindful this year and think about the best way to show your affection.

I do want to shout out a happy Valentine’s Day to my love, Jay. Also, to the many others who celebrate today.

Jenni

Computer Brain Chip

 Synchron says it's the first to implant a human brain-computer interface in the US

According to an article from Yahoo news, “Brain-computer interfaces have become a practical (if limited) reality in the US. Synchron says it has become the first in the country to implant a BCI in a human patient. Doctors in New York's Mount Sinai West implanted the company's Stentrode in the motor cortex of a participant in Synchron's COMMAND trial, which aims to gauge the usefulness and safety of BCIs for providing hands-free device control to people with severe paralysis. Ideally, technology like Stentrode will offer independence to people who want to email, text, and otherwise handle digital tasks that others take for granted.

Surgeons installed the implant using an endovascular procedure that avoids the intrusiveness of open-brain surgery by going through the jugular vein. The operation went "extremely well" and let the patient return home 48 hours later, according to Synchron. An ongoing Australian trial has also proven successful so far, with four patients still safe a year after receiving their implants.

It may take a long time before doctors can offer Synchron's BCIs to patients. The company received FDA approval for human trials in July 2021, and it's still expanding the COMMAND trial as of this writing. Still, the US procedure represents a significant step toward greater autonomy for people with paralysis. It also represents a competitive victory — Elon Musk's Neuralink has yet to receive FDA permission for its own implant.”

This is exciting news for someone like me, who requires the use of technology for everyday processes (including using my computer.) I depend on speech recognition software to write, browse the web, control household activities, etc. This would also give people in my situation more independence, as they wouldn’t have to rely on others to help them. There might come a day when this implant may become available to the public. 

It’s an interesting concept. Technology is always evolving and advancing. Nothing is ever going to stay the same. Companies are always working on different and easier ways to do things. According to an article on the Tech Evaluate website, “technology is evolving so fast because of a phenomenon known as Accelerating Change. Each technological improvement can create the next, stronger generations of technology at a faster rate. As each generation of technology is better than the last, it builds new technology faster.”

Ultimately, I believe massive, future technological changes are still yet to come. With every new advancement comes an easier way to do things. For someone who’s life is dependent on so many other people to do things for them, the more independence that’s out there, the easier it will be to do things themselves.

Jenni

My Little Buddy

A week from this past Thursday, we had to put Brody down. Around 6 AM that morning, my night nurse and aunt Sandy, both heard him making a couple of loud yelping noises. When they went to look at him in his bed, he was still sleeping, so they thought he just had a dream. When it came time for breakfast, he didn’t go over to eat it. Later when I went over to look at him, he didn’t look at me or wag his tail, which was very odd.

Sandy took him out of his bed, and he was walking very slowly and side to side. She looked up some symptoms, and one that stood out was possibly a stroke. We decided to have him go to the vet since he wasn’t acting like himself. They took some blood work and did an ultrasound on him. About 45 minutes later, she brought him back and said, “it is in good.”

When I saw him, I could see the pain and sadness on his face. Sandy put Brody on my lap then let me know what the vet said. Apparently, he had many tumors throughout his body and in the morning one of them ruptured; from that point there was internal bleeding, and by the blood work they could tell that he had cancer everywhere. 

Sandy told me the options the vet told her: I could have him home with me, but he probably would only last through the night or there is a medicine he could take where he may live 3 or 4 days. I chose the 3rd option, to put him down right away because I did not want him to suffer any longer. 

The role Brody played in my life as a companion dog, causes me to grieve, not only for the loss of him, but his emotional support. Adjusting to the fact that I’ll never spend time with him again is painful, and I know it will take a lot of time to adjust. He was a special dog; we shared a bond and affection like no other. He is also missed by my family, caregivers, and everyone’s life in which he touched.

It’s taken me some time to write this blog post because I’m still grieving. His presence in our house is greatly missed. I was in such a routine with him that I’ve caught myself during certain times. I still look at the time at 5 PM, his suppertime. I still want to call him when I’m going from room to room. I also know it will hit me even harder when springtime comes and it’s warm enough to go for a “walk and roll.” 

I know there will never be another “Brody”, but at some point, I know I’ll come across another dog to be a companion to me. I miss my little buddy so much! 

Jenni

A poem I wrote about Brody:

My Companion Dog

My mom takes me for walks

pulling on the leash to makes her wheels go faster

I’m dependent on her to give me affection and protection

I look into her blue eyes, hopelessly devoted

she is my family

I’m a dog, I’m fun, all I want to do is have fun 

when she is sad or crying, she really messes with my mojo 

That’s when I like to jump all over her, lay on her lap 

comforting her until she gets over it and takes me outside

for the most part, I love the simple pleasures of life 

One thing about me is I don’t judge 

if she makes a mistake, I forgive her

if she forgets something, it’s no big deal

when she has doubts, I will politely disagree

I see her for what she really is, pure awesome!

I know how to make her feel guilty

I just sit in front of her or at the window 

she knows what I want, mostly some attention

I know how to speak English, just not verbally

sometimes I choose to ignore her 

My favorite thing to do right now is sleep

I’m most comfortable tucked in tight places

I also like to sleep in my bed, on the couch or 

floor with something covering my face 

The more hidden I am the better

His favorite spot on the couch

Brody loved fresh laundry!

And his beds!

Happy Holidays

This past week, I’ve been snowed in. I also had to cancel going to ABLE because of the weather. There was a huge blizzard Wednesday and Thursday along with cold temperatures. So, I’ve been hiding inside. The last time I went out when it was this cold, my tubes expanded and started popping off everywhere possible. Plus, since I have a humidifier connected to my ventilator that heats the air I breathe, it leaves moisture in my tubes. If the water drops get too cold, they form icicles!

Merry Christmas to all! Christmas Eve we were supposed to have my sister and her family over for dinner with a meal of prime rib. Although she hadn’t been feeling well for a few days and ended up testing positive for COVID. I felt so bad. Especially because Christmas is a time for gathering. My mom, Sandy, and I ate grilled cheese and tomato soup. A first for Christmas Eve dinner!

Midafternoon on Christmas day Kristen’s boyfriend, Anthony, brought my 2 nieces over to unwrap some presents. Kristen hopped on video using my mom’s echo show and was able to watch. Good thing for technology these days. Later, for dinner we ate lasagna with my other aunt Julie, her husband Pat from Duluth, and my grandma and grandpa. It was a nice weekend visiting family and celebrating Christmas.

Today, I played a couple rounds of yahtzee with my niece (I got her the game for Christmas.) She caught on quickly; I haven’t played in a long time. We did have the meal that we were going to have Christmas Eve, only my sister still wasn’t feeling well. I am hoping she feels better soon, and we can all be together. For now, I plan on going to ABLE this week, since the temperatures are going to be in the 30’s.

I hope all of you had a lovely holiday.

Jenni

Accomplishments

I’m heavily involved in the spinal cord injury world, as my focus is to share information about research going on, resources for information, and creating content for others to learn more about what it’s like as a SCI survivor. Hence the reason why I write blog posts and volunteer so often. As in my last post about becoming an ambassador, I am an advocate for people with SCI and others within the community.

As an ambassador, MSKCT has provided me with a wide range of free, #researchbased resources to help #SCI survivors, family members, and others looking for information, including a toolkit for my position. To learn about the ways #SCI impacts depression, bowel function, sexuality, and more, visit https://msktc.org/sci. You can also learn how to become an ambassador if you visit their website, without adding SCI at the end.

My mom and I recently did a video interview with the Morton Cure Paralysis Fund (MCPF). “In 1995, Peter Morton broke his neck in a bicycle accident that left him paralyzed from the neck down and unable to breathe without a ventilator… Now, twenty six years later, with the help of dedicated donors and volunteers, MCPF has raised over $5 million for cutting-edge research in the United States and around the world.”

Devastated by the tragic accident, friends turned their hurt into hope. With little more than a dream, That All May Walk Again, they launched a small golf tournament in Morton’s hometown to raise funds for spinal cord injury research—and the Morton Cure Paralysis Fund (MCPF) was born.

Lately, they’ve been doing podcasts on all different platforms, interviewing others with SCI and people revolving around. During our video, my mom and I answered questions related to and about our experience after my spinal cord injury. It recently launched on YouTube and their website. You can view it by clicking on this link.

My biggest focus right now is on finishing my memoir for others to read. I’m hoping that it helps people along with sharing my story with others. Since I’ve been writing poetry, it’s been an easy way for me to develop my writing skills. It helps with creating in-depth content, metaphors, images and more. I suppose that’s why I haven’t finished it yet. I have been so into writing poems that I’ve kind of put my memoir aside. It’s difficult to not write poems, since I subscribe to the website.

Jenni

A Way to Fill My Cup

 If you know me, you’d know that I love helping others. This includes, but is not limited to motivational speaking, sharing my story with others, volunteering, etc. The Pandemic put a real damper on my situation as a quadriplegic paralyzed from the neck down. Aside from my spinal cord injury, the “stay-at-home” order was one of the most difficult times in my life and had a profound effect on me.

I know for a fact I’m not the only one. According to the World Health Organization (WHO), “Plenty of us became more anxious; but for some COVID-19 has sparked or amplified much more serious mental health problems. A great number of people have reported psychological distress and symptoms of depression, anxiety, or post-traumatic stress.” 

I tried everything to make myself useful in a time when all I was able to do to connect with others was on my computer, video or over the phone. That’s when I decided to find ways to help people through the web. I searched many different places but didn’t really find anything that suited my capabilities. Other than being able to blog, write poetry, and work on my memoir, it’s been difficult these past couple of years. Even now that the order has lifted, I haven’t reconnected with friends or gone out many places.

Recently, I was on the web searching again for different things to do relating to spinal cord injuries. I came across this website called Model Systems Knowledge Translation Center (otherwise known as MSKTC). Within their website, were various amounts of information for people with SCI’s, TBI’s, and Burns. After reading some of the information, I was floored at how much knowledge and help they had for people in my situation and alike. 

I also saw that I could become a “SCI Ambassador” to help people with spinal cord injuries. I had to fill out some information about myself and complete an application. This was exactly the type of thing I was interested in doing. As stated on their website, below is a more in-depth description of what they’re looking for:

“Are you passionate about helping people living with spinal cord injury (SCI) and their families? This could be the perfect role for you! The goal of the Model Systems Knowledge Translation Center (MSKTC) Ambassadors Program is to inform, empower, and help individuals with SCI live well. We are looking for people living with SCI, their families, and those who support them to serve as ambassadors. MSKTC ambassadors will actively promote and share free, evidence-based resources from the MSTKC to help people with SCI live well when interacting with MSKTC's audience and the wider SCI community.”

After reading this, I applied for the position immediately. Then I set up a Zoom visit with them. My main mission is informing others about how they can help others by using their resources. It’s great that I have platforms (including my blog and help of others) to spread the word about MSKTC and all the help they can provide for people in need. If you browse through their website, there are many “user-friendly resources… available in a variety of formats such as printable PDF documents, videos, and slideshows.”

I hope you can check out their website for information to not only use as a resource for yourself, but pass on to your friends, family, or others in need. An easy way is by sharing this blog post or their website by clicking on their website address: https://msktc.org/

Jenni

If you have any questions, please feel free to reach out to me or contact MSKTC for more info.