Change in Life

Change can come in many forms in our lifetime. It might come fast like a tidal wave or come creeping in slowly like a glacier. It might come in the form of an overwhelming tragedy, tough choices, shattered relationships, or even new chances you are faced with. Many times, change can be for the better even though it may be difficult. 

One thing to realize is that change takes time to get used to, whether in life or business. Also, by merely changing your attitude, and not focusing on the past or present, you can change the future. Whatever type of change you might be going through or up against, just know that you will learn to cope, and you have an opportunity to become something unimaginable.

Jenni

“The secret of change is to focus all of your energy, not on fighting for the old, but on building the new.”

-Socrates

"Some periods of our growth are so confusing that we don't even recognize that growth is happening...Those long periods when something inside ourselves seems to be waiting, holding its breath, unsure about what the next step should be, eventually become the periods we wait for, for it is in those periods that we realize that we are being prepared for the next phase of our life and that, in all probability, a new level of the personality is about to be revealed."

-Alice Walker

Help, I Need Somebody!

This morning both my day nurse who works 7 AM-7 PM and my PCA who works 7 AM-12 PM called in. I’m not sure why, the companies don’t tell the reason for it. Luckily, my PCA company was able to get someone to work the shift. Also, the PCA that works at night from 6 PM-10 PM came in at 2 PM-10 PM. Unfortunately, the nursing agency ended up not finding anyone to fill the shift, so my mom worked it.

It’s very difficult on everyone when one or more of my caregivers can’t work. Especially when there is nobody to replace them. It is usually up to my family to help me, do my cares, and make sure nothing goes wrong. Since I need to require 24/7 nursing, especially in case something went wrong with my ventilator or tubing, it’s very important that someone is always within earshot. My ventilator will alarm if the tubes pop off and I can’t breathe because of it.

A good example of this was just the other day when I was out for a walk with Brody, my nurse and a nurse in training. Something within my circuit came apart and she could not find it right away, so she had to use my Ambu bag on me. In case you don’t know what that is, it’s something they hook up right to my trach and squeeze air in inflating my lungs so I can breathe (also known as a “self-inflating bag”). It was also helpful that I had an extra set of hands along to assist.

Hopefully, everything gets back to normal. It can be stressful when people call in for their shifts, especially nurses. At this point in time, I don’t have a lot of people to call for backup who are trained specifically for my case. Although sometimes anybody is better than nobody to help out.

Jenni

Wheelchair, Standing and Health

The other day the company that helps me with my wheelchair, took it for the morning and worked on it. They replaced my tires and put in a better backrest. Also, they adjusted the seating of it, so it fits me better. They even switched out the display screen that I look at to a more “high-tech”, colorful ne space.

The only problem was that since I don’t have a back-up wheelchair, I was forced to stay in bed until they brought it back to me. It was a good thing that it didn’t take too long to fix it. They picked it up at 8 AM and brought it back to me by 12:30 PM. Even though I wake up around 7 AM, I normally get out of bed by 10 AM every day, so it wasn’t that much longer. I just had to eat lunch while lying in bed, since I usually eat around 11 AM.

As far as standing, I still haven’t been able to do it yet. Although my right tibia is no longer fractured, my left kneecap still slips out of socket. I have a physical therapist comes twice a week. One of those days (so once a week) she puts Kinesio tape on it to help hold it in place. It seems to work well, as long as the tape sticks well. I don’t get it wet when I shower, so that helps.

Hopefully, I can get back at it soon. I think it will help me lose some of the water weight that I’ve gained. My doctors still can’t find a reason why I am having so much edema. I’ve had a few different doctors order labs and done multiple tests. Even though there been many theories thrown out there, none of them seem to be the answer based off results. I have faith that someday I’ll figure out what it is.

Jenni

August Storms

This month there have been a lot of storms. There was one that was so powerful that the thunder shook the house. A couple of them were so strong that they knocked trees down. We also had a day where tornado warnings flashed across the whole state, and even a sighting of one. I posted some pictures below of some of the damages from the storms.

Across the street from my house.

Down the street from my house.

Radar from the news when the tornadoes were brewing.

Jenni

Going Out

Yesterday I went out and got some labs drawn. My mom took me to the clinic, which is right down the street from my house. Usually, when they take blood, the easiest place for them to stick me is in my hands because my veins tend to roll. It took them three tries before they were successful because my veins are so tiny. Apparently, they have a 2-stick rule; when the first lab tech didn’t get it on the second try, she had to call someone else over to do it. It’s a good thing the second tech got it on the first try because there were only two people there drawing blood!

I have a video appointment on Friday with my primary doctor to discuss medications and my labs. He ordered a bunch of different things but was specifically looking at my albumin and sodium levels. I also have a video appointment in September with my neurologist and one of the vials of blood was for the levels of seizure med that I take.

Today I was able to go out and get my hair cut. I go to the JCPenney salon in the mall, also a couple blocks from my house. It’s been well over a year and half since the last time I got it cut. I figured it was about time since it was down to my elbows when sitting in my wheelchair. I always have the same girl cut it because she knows what I like and, also how to do it in my wheelchair. In order to get it even, I put a pillow behind my back to prop me forward. I got almost 5 inches cut off and it is still on my arms. 

In both places I had to wear a mask. I just poked a hole in it for the straw on my wheelchair so I could drive. Wearing it made me realize now what my caregivers go through when they constantly wear one. I suppose overtime you get used to it, but for me it was hard to see where I was going as I was driving my chair.

Jenni

Life Lived

Do you ever have “those” days where something goes wrong, and it throws you off balance? Or you had an exciting thing happen and now that it’s over you feel lost? Sometimes this can make you sad and often let down on life. It can also have a dramatic effect on one’s mood and self-esteem. The awful news that is around these days doesn’t help.

Throughout my life, I’ve experienced plenty of situations where this has happened to me. I believe it’s important to minimize your exposure to the unwanted and open your eyes to the world that surrounds us. Look at the details of your everyday life experiences. It is within yourself to choose the path that you want to go down, and what type of life you want to live despite circumstances that arise.

In order to help the quality of your life, you must remind yourself that it’s precious. This can also lead to fighting for things you believe in and making changes in the world. Be connected, brave, courageous but also be present as you take on new challenges.

Jenni

Thoughts and Sleep

Thoughts can affect our moods, behavior, and even take on a life of their own because they have distinct characteristics. Depending on how strong a thought is, the more likely it affects our day and can repeat itself multiple times. In order to ensure a healthy mindset, we should always have the right types of thoughts. This is one reason why I like positive quotes and affirmations so much.

Sometimes I have trouble sleeping. I’m on a couple of different sleep medications in order to help, although they don’t always work. When I’m awake at night, I am usually consumed with several thoughts that are mostly just random and unneeded at that time. They can often become my own worst enemy.

Since I have nurses 24/7, they help me with my every need. This includes doing things during the night, even when I’m sleeping. The constant interruption makes it even more difficult to have a restful night. Not to mention the difficulty revolving around lack of independence.

Also, I tend to get anxious from time to time. Although I know it’s normal, when anxiety routinely gets in the way it can also ruin sleep. Lately, I’ve been having some neck and shoulder pain. I have an x-ray scheduled and then an appointment set up with my doctor to get it checked out. It often hurts and tenses up in the middle of the night which doesn’t help.

When I can’t sleep, I usually put on some relaxation music and try to calm my mind down. I also put something over my eyes to shut out any light and it does help with disruption. I know a good night’s sleep is a key factor in maintaining people’s health, which is why it’s so important that I get it when I can.

Jenni

Creating More Paintings

Recently I got back into painting; it has been a while since I’ve done it. I figured that since I haven’t been able to get out places that it would be something nice to focus on doing. For me, painting is very relaxing and enjoyable. It allows me to take my mind off anything stressful and focus on my creative side.

Depending on what I’m painting, depends on how long it takes me to finish one. Sometimes I can complete one in a single session. Other times I end up working on a specific piece for multiple days. I posted some pictures below of a couple different types that I’ve done over the past few weeks.

Abstract painting

Landscape I

                             

Landscape II

Landscape III

My favorite artist’s name is Kelly Ray Roberts. She does mixed-media art, and I have seven of her pictures hanging on my walls and a few on my desk. I just love how creative she is and how inspirational most of her artwork is. It’s definitely right up my alley.

Jenni

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