Saturday, July 4, 2020

Update on My Wheelchair

A couple hours after I posted the blog post about my wheelchair, I figured out a way to get outside. I realized that we have power outlets outside around my house. So, I just unplugged my vent from inside and plugged it in outside. It was kind of funny though because Brody would come out with me thinking we were going for a walk. Although he got very confused when I didn’t have his leash and we never left my backyard! 

Also, my vent has an internal battery of about an hour. I ended up going on short rolls with Brody. However, I didn’t feel comfortable going for more than 20-30 minutes. I didn’t want to risk losing power away from my house and a power source.

The following Monday after they said the external box was short-circuited, I called to check-in on the order. They decided to send someone else out to see if they could figure out if there was one other thing they could do before ordering one. Although he checked everything and confirmed that because there was no power going from my wheelchair to the external box, that I would need a new one.

It didn’t end up coming in until Thursday, July 2. That’s when a third guy came to replace it. After doing so, he realized that there still wasn’t power going to the new external battery box. He called someone from the company and together they figured out that it wasn’t the box at all. The problem was that when he changed the two wheelchair batteries, he didn’t hook it up right.

Each battery is 13 volts, and my ventilator needs at least 24 volts of battery to run. When he went to hook the box back into the wheelchair battery, he only hooked it up to one battery and not both. Therefore, it wasn’t getting enough charge. It was such an easy fix for so much hassle! I should have remembered this because the same thing happened last year. Although it didn’t take as long to figure it out.

Well, I’m back up and running now. Lately I’ve just been getting outside every day, although the temperatures have been above 90°F. It doesn’t bother me though. One day when I got inside, I took my temperature and it was 96.5°F even with wearing a long-sleeved sweatshirt. I’m hoping to start getting away from my neighborhood and out to some stores now that they are open.


Wednesday, July 1, 2020

Burnout: SCI Related

A while back the World Health Organization added burnout to its list of diseases. The definition of job burnout, according to them relates to stress caused by a person’s job or workplace. The symptoms of burnout include feelings of mental, physical and emotional exhaustion caused by excessive and prolonged stress. It occurs when those feel overwhelmed, empty, unable to meet constant demands, and emotionally drained. When job-related, people often find it difficult to get their work done.

Typically, a full-time job consists of at least a 30-hour workweek. Coincidentally, it’s also the amount of time, if not less than, I spend dealing with things that I wouldn’t have to if I didn’t have a spinal cord injury. Over the years, these 30-hour weeks add up and can take a mental and physical toll on an individual. There is a big difference between a standard workweek and a “spinal cord injury workweek”. It’s that there’s no escape from the daily tasks of living with an injury.

The spasms, pain, accessibility issues, caregivers, battles with insurance and everything else that comes with having a spinal cord injury never really go away. Most people can take a vacation from their job to escape any build-up of emotions or stress. Although those of us with SCI’s often dread traveling because of the added stress caused by it. Burnout is often inevitable when living with a spinal cord injury, making it especially hard to take a break from current situations. 

It’s important to find ways to manage the stress and have a variety of relief tools since there is no vacation from the injury. Some people have an ability to bear down and push forward through the difficulties involved. Although that doesn’t always work for everyone and may only help for a short period of time. 

Those with spinal cord injuries deal with unique but similar situations that only us in the community can understand. Being a C-1 C-2 quad paralyzed from the neck down and on a ventilator for almost 18 years now takes its toll on me. I’m always trying to find ways to keep moving forward despite my situation. That is why one way to vent frustrations is to talk to someone who understands the same thing one’s going through. 

Another thing that is important when dealing with stress is to take care of oneself physically. Often our bodies tend to take a toll on what goes on. It can cause situations such as struggling to cope, depression, high blood pressure, weight gain, and even ulcers. All these can add up, complicating the problems that come with spinal cord injuries.
Some short-term stress relievers include exercise, doing yoga, meditating, guided imagery, muscle relaxation, listening to music and going outside. Long-term stress relievers can include aromatherapy, getting a hug, doing artwork, eating healthy, and doing leisure activities. Also, develop a positive self-talk habit. The way one talks to themselves matters.


“Once you choose hope, anything is possible.” -Christopher Reeve

Saturday, June 27, 2020

My Wheelchair Fiasco

The other day my wheelchair batteries stopped holding a charge. Even though it was being charged all night, it would run down very quickly during the day. Yesterday, someone from the wheelchair company came out to replace the batteries. After doing so, my wheelchair was working better, and the batteries were holding charge which was nice.

About an hour after he left, my ventilator started beeping battery low. We realized that it had not been charging properly. Usually my vent plugs into my wheelchair battery and charges off that when I’m using it. We thought that when he put the new batteries in, he forgot to hook the cord from my vent into it.

I ended up calling the company and they sent the same person back out to see if he could fix the problem. Upon inspecting it, he realized that all the cords were connected properly. Looking at it further, he found that the lights were not lit up on battery box that connects from my wheelchair and then into my vent. This was concerning, being that the internal battery on my ventilator only lasts about 45 minutes to an hour until it runs out. That’s why I have plugged into my chair; it needs to be plugged in to an external outlet.

Since yesterday was a Friday and about 5:30 PM when he was back out, he said that he wouldn’t be able to order a new one until Monday. He’s going to check to see if they have any rental power boxes that I could use in the meantime. Otherwise, I’m stuck indoors for now until they’re able to get me a new one. I don’t want to risk going outside with only an hours-worth of battery.

Hopefully, I’ll be able to go out soon because it’s difficult for me to spend so much time inside. I’ve already had to self-quarantine this year because of COVID 19. To be isolated and unable to have control over what I do takes a toll on me physically and emotionally. It’s hard because I depend on others for so many things already. I will do a follow-up post after everything gets resolved; hopefully sooner than later.


Wednesday, June 24, 2020

Guest Blog Post by Brody II

I’m back to share more. Lately, I’ve been enjoying the nice weather outside when my mom takes me for a walk. I like to pull on the leash to make her wheels go faster. I rely on her to give me affection, protection and everything else. I like to look in her eyes and am hopelessly devoted to her. 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 and comfort her until she gets over it and takes me outside. I love the simple pleasures of life for the most part and don’t really care what she does as long as I can be with her.

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. If she ever 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 and she knows what I want; either some attention, to play, or go for a walk. Also, I know how to speak English, just not verbally. Sometimes I choose to ignore her if I have no interest in what she’s saying. 

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. Here are some pictures:



Tuesday, June 16, 2020

Botox Appointment

Yesterday I went to Gillette and got Botox in my neck along with the top of my shoulders. I had to get transportation to take me all the way to St. Paul which is about 30 minutes away because the Gillette in Minnetonka (10 minutes away) closed. When I called last week to schedule the ride, they told me that they’re having all passengers wear masks. I also was told that I needed to wear one going to the clinic as well.

I hadn’t been out of the house, other than my daily walk and rolls with Brody, since the use of masks were required. I was fine with it and didn’t think much of it until about 10 minutes before I was to leave. My nurse got one of my cloth masks that I had and I was about to put it on when it suddenly dawned on me. How was I going to wear it and drive my wheelchair at the same time using my sip and puff straw?

After a minute of questioning myself I had to do some quick thinking. Luckily I had some paper masks in the house. My nurse cut a tiny hole in the middle of the mask just big enough for the straw to fit in so I could still drive my chair. One problem was it restricted my vision a little bit, so it was harder for me to figure out navigation wise where my wheels were. Also, I didn’t realize how hot the masks are. It’s a good thing I only breathe out my mouth and not in as well.

The appointment itself went well. I don’t feel instant relief; it takes a few days for it to kick in. I scheduled my next Botox appointment for this October.


Sunday, June 14, 2020


Little drops of water, little grains of sand,
Make the mighty ocean, and the pleasantly land.
So the little minutes, humble though they be,
Make the mighty ages of eternity.
Little deeds of kindness, little words of love,
Help to make earth happy, like Heaven up above.
-Julia Carney

“ When you get in a tight place and everything goes against you,
till it seems as though you could not hold a minute longer,
never give up then, for that is just the time and place
that the tide will turn."
-Harriet Beecher Stowe

One step and then another,
and the longest walk is ended.
One stitch and then another,
and the longest rent is mended.
One brick upon another,
and the tallest wall is made.
One flake and then another,
and the deepest snow was laid.

Wednesday, June 10, 2020

Overcoming Obstacles

When faced with obstacles, do you give up too quickly? How do you react when something suddenly stops you in your tracks? Many of us set goals and dreams for ourselves. What happens when you don’t reach them? Your view of how you see obstacles makes a difference and affects how you react to things.

At some point in life, each one of us will face hard times. Sometimes the hardships last longer than anticipated, and other times they come for a short while. We all have strengths that allow us to move forward even though those moments feel like they are going to break us. Look at the hard times as an opportunity to grow, learn and improve your situation. Having courage, mindset to persevere, and determination can make all the difference.

When we are in the middle of a tough situation, we should pause for a moment and remember that this too shall pass. That exact moment can merely be a stepping stone to where we are going. Each one of us has a different method of coping and dealing with challenges that come about. It is difficult, but it is a vital part of learning about oneself.

Even though we wish we could do without the struggles in life, they help develop our character. Overcoming each one is another opportunity that shows us we can make it through anything. It helps by teaching us lessons we would not learn otherwise and when things don’t go as planned. It’s important to be inspired and find courage to keep fighting whatever your facing at this time. Identify what you can change and focus on what you can gain. Try to embrace the future and put the past behind you.


Here is a poem about overcoming hardships to help inspire you:

You Will Never See Me Fall

You may see me struggle,
but you won't see me fall.
Regardless if I'm weak or not,
I'm going to stand tall.
Everyone says life is easy,
but truly living it is not.
Times get hard,
people struggle
and constantly get put on the spot.
I'm going to wear the biggest smile,
even though I want to cry.
I'm going to fight to live,
even though I'm destined to die.
And even though it's hard
and I may struggle through it all,
you may see me struggle...
but you will NEVER see me fall.

-Joyce Alcantara

Wednesday, June 3, 2020

Fear of the Unknown

It is fair to say that as of now, our world has been changed forever. The year 2020 will be a memorable one, and we are only halfway through. Many people are fearing what the future may hold while others have fears about their situations in the present. Life as we know it will be different.

There are many different types of fears. One that sticks out right now is Xenophobia, fear of the unknown. It can be hard to describe because all the feelings and thoughts about this fear are in people’s heads. The phobia is when people have irrational beliefs and thoughts about people and situations that they perceive to be foreign or strange. Essentially it is the fear of anything that is beyond their comfort zone.

Some people who are Xenophobic tend to have a fear or hatred towards foreigners, people from different cultures or strangers. They also dislike people who are different from them and their behavior can become extremely violent. There are recent examples in the media today with the COVID 19 pandemic. People have taken strong violent actions and racism towards Asians and people of Asian dissent. It’s also being shown with all of the violence following George Floyd’s death.

Decisions made based from this fear will not be one that moves people forward in life. The fear of the unknown is based on the perception of what might happen in the future. An underlying cause is people’s fear of failure. This is especially true when they are about to embark on a new journey that will take them out of their comfort zone.

In order to conquer the fear of the unknown, one has to commit to making changes within themselves and that is where it gets tough. Just like any fear, it’s not something that can just be ignored and go away. Ways to do so may be shifting consciousness, letting go of negativity, learn to accept failure and finding clarity. Also, although it may hold people back from being who they could be, hope can give a person comfort and courage for the future.


“I learned that courage was not the absence of fear, but the triumph over it. The brave man is not he who does not feel afraid, but he who conquers that fear.” Nelson Mandela

Friday, May 29, 2020

Hilarious Videos

Sarah Cooper is a comedian and author who describes herself as “not the normal demographic for TikTok”. Although when Trump handed her what she explained to be “liquid gold”, she decided to use it. She lip-syncs his worst comments from press conferences and creates the most hilarious videos that have now gone viral. She has now caught the attention of many people including the news and even Ellen DeGeneres. Here is her first original video created on TikTok and uploaded to YouTube:

Thursday, May 21, 2020

Lifting Orders

Despite the number of coronavirus cases rising, Minnesota’s stay-at-home order expired on May 18. Although it extended many restrictions on public gatherings including eating at restaurants and in-service religious services until June 1. That means most retail businesses are open at either 25% or 50% capacity under safety guidelines. Small social gatherings are permitted with 10 or fewer people. These orders have varied from state to state, with some opening their doors earlier.

I’m hoping to go out somewhere soon. The only thing is the more I start venturing out, the more risk I have of becoming exposed. Even though I could figure out a way to maintain distance, I mostly would be worried about other people coming close to me. That’s why starting with somewhere like the mall would be good because it’s more open than a regular store. Next month I have some doctor appointments scheduled, but that’s another month still.

Right now, I have been trying to get outside as much as possible when the weather is nice and warm. That way I at least get a different view along with fresh air other than just inside my house. Hopefully by the end of the year, everything will be open. Although I’ve seen that a lot of stores have gone out of business because of having to be shut down and not maintaining revenue.