Thursday, November 23, 2017

Happy Thanksgiving

All in a Word

T for time to be together, turkey, talk, and tangy weather.
H for harvest stored away, home, and hearth, and holiday.
A for autumn's frosty art, and abundance in the heart.
N for neighbors, and November, nice things, new things to remember.
K for kitchen, kettles' croon, kith and kin expected soon.
S for sizzles, sights, and sounds, and something special that abounds.
That spells ~~~THANKS---for joy in living and a jolly good Thanksgiving.
-Aileen Fisher

Thanksgiving is my favorite holiday. I love the food and the time spent with the family. Today we're hosting it at our house. The house smells wonderful! I am also excited for apple pie (after I stuff my face with turkey, stuffing, mashed potatoes, and peas.). I hope all of you are having a wonderful day and are surrounded by people you love because today is the day to give thanks.

I know that not everyone who is reading this lives in a place where they have a Thanksgiving, but I can guarantee that most people have something that they are thankful for. I'm thankful to be alive and here today celebrating life; also thankful for all the wonderful people who have supported me and been with me throughout. This means good health, life, my family, and friends. What are you thankful for?

Jenni

"Regardless of our situation, no matter if we are battling disease and illness, or suffering the loss of a loved one, or faced with under-employment and economic distress, or other problems in our lives, we all have many things for which to be grateful."
-Jim West

Tuesday, November 21, 2017

Moments in Life

Crossroads
 
A moment among many
Listening to silence
Thoughts are thickening
As waves roar
 
Give out comfort
Support from above
Paths overlapping
Realizing there’s more
 
Unbearable tight grasp
Weighing me down
Without any feeling
Drifting further away
 
Don’t look back
Into the crossroads
Beyond the unknown
Let me stay
 
Make it show
To any unheard
Aware of surroundings
If broken apart
 
Step in front
Carry my weight
Hold on tight
Don’t even start
 
-Jenni Taylor
 
I like to write, especially about myself and my situation. This is a poem that I recently wrote. It’s about moments in life, how they appear, what they can do, how you can handle, and who you choose to let in to help.
 

Jenni

Saturday, November 18, 2017

Weather and Temperature

Having a SCI and being on a ventilator is no match for extreme weather changes, although that’s what Minnesota is known for. Because of my injury, I’m not able to feel if I’m cold or hot. The only way I know is if I take my temperature or my body starts spasming. Also, the cold air can be very hard on my lungs. When the vent pulls the air in, it goes through the tubing, then my trach and into my lungs. There is nothing to warm the air up so it feels the same in my lungs as it is outside. When someone breathes through their nose, the hairs warm the air up so it’s not such a shock.
 
Many people with spinal cord injuries, as a result, have trouble regulating their body temperature. Here's what it says about it on Apparelyzed.com

"A normal, healthy human is able to maintain a constant body temperature of approximately 98.6F despite the temperature of the environment. In a hot environment, the body sends a signal to the brain via the spinal cord to say the body is overheating. The brain then sends a signal back down the spinal cord and tells the body to cool itself by perspiration which evaporates and cools the skin. In cold weather, the body senses the lower temperature and our brain tells us to put more clothes on to warm ourselves up.

Most people with complete spinal cord injuries do not sweat below the level of the injury and many quadriplegics cannot even sweat above the injury (even though they may sweat due to autonomic dysreflexia). With loss of the ability to sweat or vasoconstrict within affected dermatomes the patient becomes poikilothermic and needs careful control of their environmental conditions. Therefore, if a high paraplegic or quadriplegic is in an outside temperature over 90 F, especially when the humidity is high, the body temperature will begin to rise (Poikilothermia). Likewise in a cold environment, the body may not be able to get the messages through to the brain that the body is cooling down, and if left untreated, the person will soon become hypothermic."

When I’m inside even if the temperature is left at a normal 72°F my body still gets cold, especially because I’m not moving around. I usually have a blanket on and am usually by my electric fire place which I can flip on and off when needed. Despite getting cold easily, the low temperatures don’t stop me from going outside. I just bundle up with a hat, scarf, jacket, and warm blanket in order to keep the heat in.

I love taking my dog Brody for a walk and getting out in the community. This is one reason why the hot or cold weather doesn’t stop me from getting out. As long as the temperature stays above 0°F and below 100°F I’m willing to venture out. It’s definitely not the same to just look out the window as it is actually going somewhere.

Jenni

Tuesday, November 14, 2017

Another Memorable Event



 

"Recognized over the world, Cirque du Soleil has constantly sought to evoke imagination, invoke senses and provoke emotions."



 Avery in front of the stage
The other day my dad took me, my sister and 4-year-old niece Avery to Cirque du Soleil. I’ve been to 4 different ones before, but never like this one. Sometimes they’re hosted inside a tent, and are focused around a bunch of performers doing acrobatics. There is no ring and no animals involved which makes it a modern circus.


This one was called Crystal: a breakthrough ice experience, although it wasn’t just an ice show. It’s the very first experience on ice from Cirque du Soleil. World-class ice skaters and acrobatics came together to perform. The lead character, Crystal, was on a tale for self-discovery as she goes into a world of imagination.

It was so cool to watch them on ice this time! My favorite part was all of the special effects, along with the storyline. We had a great time and I hope to do it again next time they come around to the cities!



This is our view of the stage and what it looked like.

Jenni

Wednesday, November 1, 2017

At Peace


Peace is a quiet and calm state of mind; freedom from disturbance. A sound of silent being in life that allows one to focus on stability and undeniable feeling of wonder. Giving some sense of comfort in knowing that things will and can be at ease. Something so profound in the world that may otherwise be sometimes difficult to gather, especially when chaos creeps its way through the cracks, disrupting any calmness created. It’s okay to be vulnerable; relax by making or becoming less tense or anxious. Promise to be strong so that nothing is in the way of disturbing what’s ahead.

My world is filled with disturbances from the constant flow of energy running through. Every time something or someone new comes about, it may disrupt or disturb my life. If I prioritize it on levels, difficulty being at the top and easy at the bottom, it helps me separate what is manageable. I’m at a place where I make this my mission trying not to have negativity exist. Inner peace begins the moment I choose not to allow an event or person to control my emotions. By not wasting time on what could have been, I’m able to focus on the future and what lies ahead.

This also allows me to deal with adaptation. Today marks the 15 year anniversary of my accident. My choice is to celebrate this day and look at the positive side of things. Even though it transformed my life, it didn’t change me. I’m still the same person and it only helps me see how much more I have to give. It may be difficult at times but I try to focus on dealing with it on a greater level. I want to show others not to be afraid of change; it happens every day in different ways.

I’m seeing the beauty in small things and realize that not everything in life is perfect. I want people to know that when times may be tough, not to give up. Just because your day may seem stressful or chaotic, others may be having an even harder day. Never give up because there are people who may not be as strong and are having difficulty living life. Take this time now to think about those who may be struggling with peace, change, self-esteem, lack of independence etc.

Jenni

"Train your mind to see the good in everything. Positivity is a choice. The happiness of your life depends on the quality of your thoughts."
-marcandangel

Saturday, October 7, 2017

Thoughts about Health


As far as my nursing staff goes, I understand that working for a C-1 C-2 quadriplegic paralyzed from the neck down isn't always easy. My nurses get breaks whenever possible to allow them to rest their body. Some of them have pain as well in different areas, either from old injuries or working for me.

One of the biggest things is for someone to recognize when something is not feeling right with their body and making sure that they get it taken care of. Especially if it could get worse and cause more damage or pain in the future. I found this list of thoughts that people may think to themselves when they experience feelings about their health and they are ignoring it or don't think it's that bad. Take a look at it and see if there's a dangerous thought that you're thinking about your health that may just be worth taking a second look at.
 
The 10 Most Dangerous Thoughts About Your Health

Which one is yours?

 
1. Maybe it will go away.

Are you willing to risk that it won't?

2. It comes and goes.

Why wait until it is a constant problem?

3. It's not that bad!

Compared to what?

4. It only hurts when I…

If your tooth only hurts when you drink something cold, is the problem cold water or a cavity?

5. I know what my problem is…

What is your solution?

6. I was told I've got to live with it.

Don't give up on your body or your body will give up on you.

7. I don't want to know.

What you don't know can hurt you. What you do know can help you live a fuller life.

8. I don't have any symptoms.

Did you know that the first symptom in over 57% of heart disease is a heart attack?

9. I don't have time.

If your time is valuable, can you afford to ignore your bodies signals and risk being affected for weeks, months or even your lifetime?

10. I can't afford it… My insurance won't cover it.

You can't afford not to. What insurance covers your car payment, your rent/mortgage or your groceries? You find a way day after day, month after month to pay for these necessities… What about your greatest necessity, your health?

When any of my nurses tell me they're in pain and therefore aren't able to do things how I normally do them, I most likely will hear one of these 10 reasons why they haven't been able to address it. I can understand to an extent, but it also affects my body whenever I am being moved differently because of someone else's pain. Also, it can sometimes limit some of the stretches and position changes that I do. I think it's important for everyone to not just think everything is okay with their health because they have an excuse on why not to get it taken care of.

There have been multiple times over the past 15 years where my body has told me something is wrong and I listened by going to the ER or getting on some medication. There are also many times I could have (or almost) died had I ignored the signs my body was telling me. I'm grateful when I know something isn't right and that I make the right choice to do something about it, for my own health and benefit.

 
Jenni

Monday, September 25, 2017

Quote of the Day

"I will act now. I will act now. I will act now. Henceforth, I will repeat these words, each hour, each day, every day, until the words become as much a habit as my breathing, and the action which follows becomes as instinctive as the blinking of my eyelids. With these words I can condition my mind to perform every action necessary for my success. I will act now. I will repeat these words again and again and again. I will walk where failures fear to walk. I will work when failures seek rest. I will act now for now is all I have. Tomorrow is the day reserved for the labor of the lazy. I am not lazy. Tomorrow is the day when the failure will succeed. I am not a failure. I will act now. Success will not wait. If I delay, success will become wed to another and lost to me forever. This is the time. This is the place. I am the person."
-Og Mandino

Saturday, September 23, 2017

A Poem That Fits

Determined I Shall Be

Keeping myself optimistic
Each day begins anew
Looking on the bright side
That's what I had to do

Erasing negative thoughts
So doubts will disappear
In knowing I have patience
I continued to persevere

Persistence always helps
In using determination
I'm never one for giving up
Whatever the situation

In believing all is possible
That is so true of me
Everyday I remind myself
Determined I shall be

-Hope

Monday, August 21, 2017

Relationships in My Life

According to Merriam-Webster dictionary the definition of a relationship is: "The way in which two or more people or things are connected."

Although there are many people that come and go throughout one’s life, there are some that connect on a deeper level and others that just pass through. In my life I’m fortunate to have many relationships including friends, significant others, family, caregivers, even pets etc. It feels good to have that one person or group you can count on to talk to or be there for you no matter what.

I was once asked if it’s tough to make new friends now that I’m in a wheelchair and a quadriplegic. I think it is difficult sometimes, but it isn't impossible. It seems hard for others to approach someone with a disability because people are afraid of the unknown. I guess I would say that it’s harder to find new friends who are able-bodied versus disabled because I have more in common with someone who has a disability.

I have made many new friends since my accident including past nurses. I also still keep in touch and hang out with friends from before, even ones I’ve had since grade school! It’s great when there are those that are accepting of my situation, especially when it’s someone I meet post accident. That’s why I try to socialize and meet as many people as possible. I want others to know that I’m still me, despite my disability.

Another type of relationship is on a romantic level. I’ve been asked many times about what dating is like for someone in my situation. It seems like a complicated question, but some of the answers aren't any different than from someone who is able bodied. Before meeting my boyfriend Ryan of almost 3 years, I still faced the same obstacles like finding someone who was my type and liked me for who I am. I had ups and downs, faced rejection just like others. I also had to learn that this was okay and I don’t have to settle with just anybody to make me happy.

Ryan and I met on an online dating website called Plenty of Fish. Although he’s been through disability-related situations throughout his life, he understands and accepts me for who I am despite my disability. Ryan is an exceptional guy, and one who has proven his love for me through his actions, affection, care, and trust. He currently works as a CNA helping other people with disabilities in their daily living.

My mom has been there with me through everything. She is always there for me when I need her and takes good care of me. It's hard when she goes away, but I know she needs a break too. I don't know what I would do without her by my side. Two years ago, she was diagnosed with colon cancer and as a result underwent chemo and radiation. That same year she had 2 surgeries. Earlier this year (1 ½ years later) she had to have another surgery to repair damage caused by the chemo and radiation. In November, she’ll have one final surgery.

There are other family members close to me include my dad, sister, and niece. I usually see my dad every other weekend or when he gets a chance to come over. We like to hang out and play games. Sometimes he brings his dog Bailey over. I also have my sister, Kristen and niece Avery who is 4 years old. They live in an apartment nearby, and stop by a couple times a week. It’s nice when I get a chance to see them and hang out. My niece, Avery, likes to be involved with whatever she can, especially helping out with my cares.

Another relationship in my life that I am faced with on a daily basis is having a nurse by my side 24/7. Depending on the person working for me also depends on what type of relationship we have with each other. Some I am closer to than others, especially if they’ve been working for me for a longer period of time. Most of the time the nurse and I have a relationship where we understand each other and have bonded.

It can also get difficult at times having someone by my side all the time. I may get irritated or annoyed with the nurses, but that's only because 12 hours is a long time to spend with one person. Sometimes I just want to be alone with no one in the house, but I know that will never be possible as long as I'm on a ventilator and have a trach. If something were to happen, for example my tubes popping off, they need to be there for me to put them back on so I could breathe. I just have to remember that they are my hands and there to help me.

As far as pet relationships I have my dog Brody who is like my companion dog. Even though he isn’t certified, he still acts like one. His breed is a Chinese Crested Powder Puff and they’re known to be very loyal to their owners. I think that is why he is so in tune to my needs and doesn’t require a lot of direct training, especially when it comes to obedience to me.

Regardless of relationships that may come and go in my life, the one relationship that always remains and never goes away is my relationship with myself. I know if I stay true to who I am and never give up despite what happens, I will persevere and overcome any challenges or obstacles in my way. That being said, my main goal is to live life to its fullest and remain positive for myself and others around me.


Jenni

Sunday, August 13, 2017

Getting Taller



 


Tuesday, August 8 a company called Handi Medical came out and finally delivered me my new wheelchair. It took over 4 hours to transfer everything over from my old wheelchair and get everything programmed. I've been waiting for a long time for this. I first started this process in December 2015. Like I stated before, it has the ability to stand, so I won't have to transfer into my Easystand stander. It also tilts, reclines, and elevates up and down to meet different levels of need.

Standing helps prevent osteoporosis and also strengthens bones and muscles. Being paralyzed from the neck down is difficult, especially when it causes me to be uncomfortable in my own body. It's not easy to sit in one position for a lengthily amount of time, so I'm constantly needing range of motion or some sort of movement. That's where the freedom of being able to stand on a regular basis will be nice comes in while utilizing my new wheelchair, which is one of the things recommended for spinal cord injuries.

Getting started is always the hard part. Since I hadn’t stood in about eight months (last time I trialed the wheelchair), my body wasn’t used to it. I have hypotensive episodes, where my blood pressure drops when I change positions from laying to sitting. It's even worse when I go from sitting to standing. Most times I have to go really slow and gradual into a standing position. I’m on 2 separate blood-pressure medications to help elevate it.

Although, since receiving it my blood pressure has improved while repositioning into standing and hopefully soon I will be able to go straight up without having any issues. I have been standing at least one time a day, mostly for 30 minutes at a time. In fact, I’m standing right now while writing this blog post! The picture posted above is of me standing for the second time since receiving my new chair. I'm 5'8", but it is up off the ground so I stand taller than everyone who is helping me.


Jenni