Update on My Daily Life

Lately I have been in a routine during the day. Despite the fact that it’s the end of November already, it’s been really nice outside. I try to get out every day; Brody loves the exercise and I love the weather. The other thing that I have been doing every day is standing. Now that I have my new wheelchair, it allows me to stand at will.

Having the freedom to take ½ an hour to an hour to get on my feet makes the world of a difference in my body. I have to make sure to monitor my blood because having a spinal cord injury it has a tendency to drop. As long as I stand at the right time during the day, it’s usually okay. Since writing my last blog post about standing in August when I received my new wheelchair, I’ve been able to go up to 90° without having to stop in between.

One thing that’s different throughout this year is that my body has been retaining fluids. This causes my body to be puffy, and gain weight as well. I have what is called edema in my extremities. Edema is swelling caused by excess fluids trapped in your body’s tissues. It’s more noticeable in people’s arms, hands, legs and feet (which is what I’m experiencing).

Mild cases may result from sitting or staying in one position for too long or eating too many salty foods. It can also be an effect of blood pressure medications which is what we initially attributed it to. For a while I was on two separate ones which make my body retain fluids to keep my blood pressure up. Despite weaning myself off the one that gives me the most symptoms I am still having this issue. There are meds called diuretics which completely drain tissues of fluids, although if I stayed on them long-term it would make my blood pressure drop significantly.

Other than the edema, I’ve been pretty healthy. I haven’t had any trach or bladder infections all summer or fall. This is the first year that my body has been that way and I believe standing has helped me be able to move my secretions better. I’m also using an antibiotic nebulizer where I do it for one month off, on for another and so on.

Jenni

Happy Thanksgiving

These turkeys live in the neighborhood year-round.
They mostly hang out at this house because the lady that lives in it feeds them.
By the way, I took this photo on Thanksgiving day!

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

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

 

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

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

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