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

Thoughts about Health

Since I have some feeling (but not movement), I have pain in my neck, shoulders and back. I have lots of therapy throughout the week to help reduce and even try to eliminate it. Sometimes the pain is constant and hard to deal with and other times it's gone altogether. There is not much more I can do to get rid of it besides stretching and occasional pain meds like ibuprofen. One thing that tends to happen is that I can tell that I am in pain simply because of the way my body responds (I have muscle spasms) but I may not be able to feel it completely. Then I have to take a combination of meds for pain and spasms.

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

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

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

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

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

Overdue Update

People keep asking me why I haven’t blogged in so long. I used to do it almost every day or when I had a chance. It gives me great joy to write and share my story along with get my feelings out. My blog is kind of like my diary in a way. I’ve definitely thought about taking all the posts I have written and creating a book using them. Although, to be honest even if I start one it’s been difficult to finish a blog post because I get distracted or lose my thoughts. Sometimes I’ll go back to the same one I’m writing multiple times before posting it.

 

Another reason why it’s been hard is because I have a lot of other things going on in my life right now. Here’s an update about myself and the things I’ve been doing. First, I haven’t been getting out as much as I used to. I am usually able to take my dog, Brody, out for a walk and roll just about every day as long as it’s nice out but that’s about the extent of it. There are different issues that hold me down as well.

Getting infections is no fun, especially in my situation. As I stated in other posts, last year I unfortunately got pneumonia five times, a couple of them that actually landed me in the hospital. Then, earlier this year I had bouts of pneumonia a couple times that held me back from doing things. It seems that I’m constantly dealing with these chronic infections tying me down, where I am unable to do things like I wish. On a good note I haven’t had a respiratory infection since February now!

As far as family goes, my mom underwent reconstructive surgery on Monday the 24^th. She was diagnosed with colon cancer a couple of years ago and as a result went through chemo and radiation. Good news is all the cancer is gone although the chemo and radiation damaged tissue. This is the reason why she needed to reconstruct the tissues that were damaged. Everything went well and after she spends a week in the hospital, she’ll then come home and be in the recovery process.

On a separate note, 2 posts ago I talked about my new wheelchair I was supposed to get. Unfortunately, it still hasn’t arrived yet. It’s now due to be delivered within the next week or so. They’re waiting on a cord that connects my ventilator to the wheelchair for power. I’ve been in the process of trying to get it for over 1 ½ years. It has the capability to stand, allowing me to take pressure off of my body. Constantly sitting isn’t easy and in my current wheelchair, I’m always in pain and have muscle soreness due to lack of repositioning along with strength. I also think it has to do with the way the chair is wearing down; I’ve had it since 2010.

I started using the Easystand Evolv standing frame in 2008 because of the health benefits it gives me. Having my new wheelchair will replace needing to use the standing frame. One thing I have to watch while standing is my blood pressure. It frequently drops and sometimes gets so low that it doesn’t read on the blood pressure cuff. It’s been a constant issue on a daily basis. I’m on two different medications to help raise it although they don’t always seem to do anything. It’s with hope that standing every day in my new wheelchair will help with this issue.

It’s even more vital that I get my new wheelchair as soon as possible. Monday I was outside with Brody and accidentally ran my wheelchair into the curb. I busted my front right wheel so the rubber is split in half. Although there is a gap, we were able to duct tape it to keep it together so I can at least roll in short distances. I was stuck indoors until someone was able to come out today and fix it so I can start getting out and about more often. When he looked at my other tires, he said that if I don’t get my wheelchair within the next few weeks, I need to have them replaced. This is because they have worn down to the point where I could start damaging my rims.

That’s all for updates now, but as far as my wheelchair goes I will definitely keep you posted!

Jenni

Back to Speaking

The other day I went to Hopkins High School and spoke to a class called Peer Insights. I took the same class when I was a junior there and it was by far my favorite. It is designed to integrate people with disabilities and their peers; it is a great concept that gives insight to all types of situations. When I took it, we went on field trips, had guest speakers and did a lot of fun activities. This was the first time I’ve done any public speaking since 2014 and it was also to a Peer Insights class.

This was the 2^nd time I went back to my high school since graduating and it still brings back memories. I was 16 and a sophomore at the time of my accident. After spending 6 months in the hospital I went back my junior year. It was difficult adjusting to being in a wheelchair along with attending classes and trying to make it through the long days. Although my positivity and determination surpassed everything and I was able to graduate on time with my class in 2005.

During my speech, I shared my story and talked about the challenges I've been through and the obstacles I have overcome. I also spoke about how I continue to stay positive despite my situation and what I'm doing now. They had tons of questions and I showed them my vent and how I move my wheelchair. Then I asked them to share their stories of any challenges or things in their life that they have gone through. It was interesting to hear what they had to say.

After I got done speaking, I started talking to a girl in the front row who was a senior. She asked what elementary school I went to. When I told her I went to Glen Lake, she stated that she went there too. After talking for a couple of minutes, she said she remembered me from when I spoke there in 2009 to a class of 3^rd graders and she was one of them!

Here is a post I did on my blog in 2011. They are similar stories that have happened in the past:

"I was at school the other day heading to my class when a guy stopped me in the hallway. He told me he remembered me from a speaking engagement I did three years ago. It was a 15 min. speech after a mock car crash to about 1200 students and faculty at Eastview high school. He was one of them.

I was kind of taken aback because I didn't expect it. He said that I inspired him that day. He also told me to keep speaking and sharing my story; that I'm amazing and inspirational. It felt really good to hear and know that I had touched somebody.

This reminds me of a similar story that took place a couple of years ago. I had spoken to a group of about 80 sixth-graders at Glen Lake elementary school. One of the students in particular had gone home that day and talked to his parents about my speech. He told them about me speaking and my story.

A couple of days after I had spoke, I received an e-mail from the boy's father. He told me that his son had come home talking about me. Then he said I don't know if you remember me, but I was one of the firemen that helped pull you out of the car that night. I came and visited you in the hospital afterwards.

Chills went through as I read those words over and over. I did remember him; he brought me a St. Christopher medal. He also said in the e-mail that him and his department still talk about that night. It's amazing the connections that we have in the world throughout life. I'm thankful every day that I'm alive and able to help others just by being me. I hope to have many more stories like this to share."

It turns out I did get another story out of what I do; that’s exactly the reason why I love speaking, sharing my journey and inspiring others. I have joy and happiness while knowing that I’m still here living my life out, despite what happened to me. It just goes to show that I have so much more to offer and I’m definitely going to keep spreading my message.

Jenni