Nurse Call Out

I have stated in the past how much I depend on my nurses and PCAs to help with all my cares. They are important and vital in order to go about my daily life. Even though sometimes it can be difficult to have people around me 24/7, I’m fortunate to be fully staffed. 

When either a nurse or PCA calls in or we do not have one for that shift I have to rely on family to help. Sometimes we are able to get someone to fill the shift, either one that works here, one that’s backup, or someone new to just fill in. Although it doesn’t happen very often that we find a replacement, especially if the call out is that day.

It’s always difficult when this happens for a couple reasons. First, my mom isn’t able to do any lifting like she used to be able to. Although my aunt, Sandy, can help when she’s here which is nice. Second, I don’t always get everything done that I need or want in a given day. I know everyone does the best with what they can do, and I am very appreciative of that. 

This morning, my day nurse called in saying that she had a “family emergency”. I never know if it’s true or not or what the real reason behind it is. Luck was on my side that Sandy was available to help. Also, my PCA that worked this morning from 7 AM to 12 PM said she could come back and work from 1 PM to 3:30 PM to stay with me. They don’t do nurse related stuff but are here if I need anything else.

Jenni

Effect of Coronavirus

Throughout this year, COVID 19 had a dramatic impact on the way we spent our time. People ended up watching more TV with apps like Netflix, using their phones to make face calls with others, and shopping online. Since the lockdown was enforced, our society changed, and this especially includes the use of our devices.

Big increases in the use of social media, entertainment and communication apps showed that our devices were vital in helping to replace the human connection and social gatherings during our time indoors. Even when things started to open, the popularity continued because doing things remotely is so much easier. Also, the coronavirus cases continue to rise, so it is causing people to resort to what is available at hand.

For many Americans right now, the scale of the crisis has also reshaped the way we go about doing other things. This includes how we buy homes, travel, to the level of security and surveillance we are accustomed to, and even the language in which we use. No one knows exactly what will come or when this is going to end, which makes these new and different ways even more obvious.

Another sign that it’s reshaping us is the level in which we go about our daily lives. This includes being with other people, touching things, and even breathing the air in an enclosed area. Even when this is all over, it could become second nature to recoil from touching our faces, washing hands more frequently and shaking hands with others. Unfortunately, it also resorts back to online usage, as more people will be asking themselves whether it’s important enough to do things in person.

Jenni

Starting My Book

After ending my CaringBridge website, I started my blog in 2008. I thought it would be a good way to develop my writing skills and put all my thoughts together. Upon starting it, I didn’t know how big it would become and how much of an impact I was making on others with my posts. After doing it for a while, I realized that with my passion for writing that I wanted to write a memoir regarding my accident and the years following.

Although with my blog underway, my daily routine and other tasks in life holding me back, I put the book idea on standby. Except lately more ideas have been popping into my head regarding it. That’s when I decided it’s time to start the process of gathering some information together. I’ve been researching information on “how to write a memoir” and began working on putting an outline together. 

I’ve saved just about every blog post I have written in Microsoft document form. I’ll probably use bits and pieces of them within it. Then it’s a matter of actually writing it, publishing it myself and then getting it out there for all to read. I know it’s going to take me quite a while to get it finished, but starting it is always the hardest part!

Jenni

Being Special

I think what makes anybody special is being authentically you because there is only one of us in all of time. We each are special and we each are unique, all brilliant things. Just allow yourself to be that person. Allow yourself to make mistakes. Allow yourself to try things. I think that’s what makes you special.

I would never alter the way I am to change the way others see me. If they don’t like me, I can’t do anything about it because I am who I am. I’m a positive person, one who recognizes that just because someone may be different, doesn’t mean it’s a bad thing. I only have good intentions, no matter what the situation is.

My main goal is to help others and show them the endless possibilities available. That is why I enjoy public/motivational speaking. To share my life story, educate people, and show the abilities of people with disabilities. By speaking, I teach others not to take things for granted, never give up, and live life to its fullest. You never know what can happen.

Jenni

“The more you like yourself, the less you are like anyone else, which makes you unique.” - Walt Disney

Bible Study

Recently I joined a Bible study group consisting of three other people, one of which is a longtime friend of mine since second grade. We meet once a week (Thursday nights) via FaceTime and talk about certain sections of the Bible. We go based off another book that helps break down the Bible for you to read it in a year. I’m really loving getting back into reading and learning more about the Bible. 

I’ve always had faith and been a Christian, but never really went to church much. Only when I was in junior high with my friend. A couple years after my accident my family and I started going to a church about 15 minutes away from my house. Although we stopped going a few years back, in 2016 when I was hospitalized a lot. And now with the coronavirus, I’ve been finding it difficult to go out to places. Every so often, I watch the service online.

It gives me a great feeling when I am reading the Bible, talking about it, and praying. I know how lucky I am to be alive today despite my accident and often tell myself that it was a miracle that I survived. To me, having faith isn’t always about believing in God. It’s an expression of hope that goes beyond the conscious mind and based in one’s heart.

Jenni

“Without faith in ourselves we would hold ourselves cheap, and without a faith in others we could never live as free people.” - Arthur Dobrin

Butterflies and Birds

A few weeks ago, my friend brought me three monarch caterpillars. I got to watch the process of them going from caterpillars into butterflies. This is the fourth year in a row that I had the privilege to do so. They all spun on the same day and came out on the same day (15 days). After they come out of their crysalis, their wings stay wet for a couple hours. That’s when I was able to put one on my hand upon release!

Also, on the topic of nature, there is a robin’s nest on the side of my house. The mom leaves almost every time I go past it. I was able to see them when they were eggs and then right after they all hatched (through pictures). It will be fun to watch them as they get bigger and eventually fly away.

Jenni

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.

Jenni

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.

Jenni

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