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 C7/C8 to T4 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

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