Spinal Cord Injury Awareness Month

As September comes near, United Spinal Association is getting ready to mark National Spinal Cord Injury Awareness Month.  Each year, they come together to celebrate the SCI community and to educate the general public on the challenges of living with a spinal cord injury. Despite living with SCI, they have confidence in a productive, full, rewarding life is within the grasp of those with the power to believe it and the courage to make it happen.

According to the latest figures from the National Spinal Cord Injury Statistical Center, located at the University of Alabama at Birmingham, “there are approximately 296,000 Americans living with spinal cord injuries.  Approximately 17,900 Americans will experience a spinal cord injury in 2021”. The average age at injury has increased from 29 years in 1970s to 43 years currently. About 78% of new SCI cases are male.

Life after a spinal cord injury (SCI) can be tough.  Having to deal with the change of being able to move and feel everything to not, is the most frustrating, challenging, and difficult part of a SCI.  I’ve learned over the years how to cope with my spinal cord injury and the different abilities that I can do.  I’m lucky to be so positive about my situation; there aren’t always people that.  The reason I choose to be, is because I couldn’t imagine going through life being mad or sad about what happened.  I choose to deal with it the best that I can for my own sanity.

As hard as it is I know that by working through the challenges and overcoming each obstacle that comes my way is another victory towards a better quality of life for me.  If I can keep that momentum going and those thoughts in my mind, I know for fact I can accomplish anything.  My goal is to teach what I’ve learned to others; to share my story so that maybe I can hel also like someone threw neck down. P those in need of a little inspiration in their life to keep going no matter what comes their way.  

One thing that helps me along with others is the different organizations working to improve the quality of life of people with SCI’s.  They also want to help show others what life is like with a SCI so that people can understand a little bit more about what one goes through when they suffer an injury like mine. I’m glad that there are organizations out there working to improve the quality of life of people with spinal cord injuries. United Spinal helps thousands of people overcome the daily challenges of living with an SCI each year. 

You can show your support for their community and mission by raising awareness, as they celebrate SCI Awareness Month. In order to educate the public on issues that affect people with SCI’s, they pull all their resources together. “United Spinal asks their supporters to share throughout September to help educate the general public on spinal cord injury and spread awareness to the community. If you share any of the content below on your social media networks, use hashtags #UnitedSpinal #WeRollUnited #SCIAwareness.”

Jenni

Poems and Quotes

Whether you’re looking for poems about life to celebrate a loved one or for yourself for inspiration, you’ll find that each one is unique and has a different meaning. They may be short, unique, strong and powerful or long, impactful, meaningful and courageous. Narrative poems may tell a story or simply paint a picture. Motivational poems about life encourage us to take on a new perspective. Other poems about life may stop you in your tracks and cause you to think. 

There are also many quotes out there. They may be only a sentence or two, but just as influential as a poem. These are reasons why I like poems and quotes so much, especially after my accident. They have the power to change people’s minds about certain issues and situations in life. 

That brings me back to my favorite quote and what I always say about it: "Life is not measured by the number of breaths we take, but by the moments that take our breath away." This quote has two meanings for me. The first meaning is exactly how it’s stated. The second is a literal and more personal meaning. Life is not measured by the number of breaths I take, which happens to be 14 breathes a minute, but by the moment that took my breath away.

Jenni

Update

Things have been going great at ABLE. After only seven weeks of intense working out twice a week, I now can sit on the side of the mat unassisted and move myself side to side and back-and-forth (almost like a sit up, only not while laying down). Also, if someone pulls my right arm forward on my armrest, I can pull it back by myself. These are all new things that I couldn’t do before ABLE. I’m very excited with my progress along with newly gained strength and can’t wait to see I can do from here on out. I posted some videos below.

Since being in the hospital to try to find the source of my edema, I’ve lost over 20 pounds of fluid. I guess they were right about my seizure medication being the source of my water weight gain. I feel so much better, and people have been noticing a significant difference as well. There is more fluid that I could lose over time, and I believe ABLE will help with that.

At the beginning of this month, I went to the orthopedic surgeon to get both of my legs checked out. Since I injured my left knee in the middle of 2018, it healed up for about a year after wearing a knee brace but has been bothering me for the past year. At the beginning of 2019, I fractured my tibia on my right leg. A couple weeks ago while doing ABLE, I believe I reinjured my right leg somehow. I’m not sure which part is injured I just know that something is not right about it because my leg spasms and was bruised. It also won’t straighten out.

After getting to my appointment, I had to wait 50 minutes to see the doctor. I talked to him for roughly 15 minutes for him to tell me that in order to see what’s wrong, that I would have to get an MRI and x-rays on both legs. Exactly what I thought before going to my appointment. Then I waited 45 more minutes for my transportation driver to come bring me home. I thought it was a waste of time, but then again, he had to check it out in order to make his decision.

The soonest I could get an MRI was 19 August. I have a follow-up video appointment with the orthopedic surgeon the second week of September. I’ll post an update after I get the results and whatever action he wants to take going forward. I also have an appointment with my pulmonologist at the end of this month. It’s just one of the yearly visits I need, just like a checkup. I usually have them for most of my doctors, either yearly or every other year. I have so many doctors for every need that I can’t even count them.

My family has been doing good. My sister’s birthday is August 11 and oldest niece’s birthday is August 16; she will be eight years old. My other niece will be 1 years old in October. Oh, how quickly they age! Other family birthdays will be coming up in October as well, including mine. Also, I have been getting outside and taking Brody for walks as much as possible. Although the temperature these past couple of months have been in the 80s and 90s with high humidity, which makes it a little and comfortable.

Avery and Madilyn beginning of July

That’s all for this month’s updates. I will update more next month as things progress.

Jenni

Disability Awareness

With having a disability, there are many challenges and misconceptions that I’ve come across. Some of the most common are health, accessibility, discrimination, and language usage. Thus, according to the Right of Persons with a Disability act in 2016: “A “person with disability" means a person with long term physical, mental, intellectual or sensory impairments which, in interaction with barriers, hinders his full and effective participation in society equally with others.”

A great number of disabilities are preventable, however there are a lack of affordable access to proper healthcare, aids and appliances. In my situation, I am very susceptible to health issues. Having a high spinal cord injury and being on a ventilator is one of many reasons why I may get sick or have infections more easily. When those with disabilities get sick, there are only so many options when it comes to accessible and affordable healthcare.

Although efforts have been given to ensure accessibility in most buildings, there are still multiple places that are not accessible. This includes transportation, access to services, restaurants, housing etc. The ADA (Americans with Disabilities Act), require all restaurants to be accessible along with Dr. offices, bars, eateries, theaters, hotels, shops, stores, shopping malls, private schools, museums and service establishments. Some people may not even be aware of the difficulties a person with a disability might face from participating in everyday life and common daily activities of getting into or to an area that is not accessible.

Not only do people with disabilities face discrimination in school there are certain public “ideas” about what someone with a disability looks and acts like. There are a limited number of education places that are available and inclusive. Along with this includes trained teachers and educational materials. I know I faced this firsthand when I was going to school and out in the public. It’s difficult to be out in a world that isn’t always accepting of those with disabilities.

Many people commonly use dated wording when speaking about people with disabilities. Mostly because they may have grown up with different terms. Over time, the terminology has changed, and some words can often be offensive. Disrespectful language can make people feel excluded and can be a barrier for participation. It’s important that people are aware of the meaning behind the words they use when referring to, talking to or working with the Disability Community. 

Use the term “disability,” and take the following terms out of your vocabulary when talking about or talking to people with disabilities. Don't use the terms “handicapped,” “differently-abled,” “cripple,” “crippled,” “victim,” “retarded,” “stricken,” “poor,” “unfortunate,” or “special needs.”. It is okay to use phrases or words such as “people with disabilities”, “disabled,” or “disability,”. When in doubt, call a person with a disability by his/her name.

In my own experience, I have been told by others that I’m an inspirational person and have a vast amount of courage to go through what I did after my accident. Just because someone has a disability, it doesn’t mean he/she is courageous, inspirational, brave, superhuman, or special. It is not unusual for someone with a disability to have skills, talents, and abilities. People with disabilities are the same as everyone else. To me, I’m just trying to get by as best I can and live my life as normally as possible.

I believe people with disabilities need to be more integrated into society by overcoming stigma. Thus, why I like to talk to others and share what I have experienced in my life. This is part of the reason why I blog, do public speaking, and show others my abilities despite my disability. Also, I think the scale of disability needs to be better understood by improving the measurement of disability, including all rights.

At some point in our lives, disability will impact all of us. Later in life you may gain a disability, know someone with a disability, or have a family member or child that you care for. Disability is a part of our everyday experiences. Everyone has a part to play in order to ensure that every single person, no matter what the ability, can achieve a type of society that is 100% involved.

Jenni

“The difference between the right word and the almost-right word is the difference between lightning and a lightning-bug”.

-Mark Twain

Life As a Quad V: Questions Answered

This blog post contains my personal answers to five of the most deep, thoughtful and intimate questions regarding being a quadriplegic. If you have any questions or comments, please feel free to leave one in the comment section below. I always look forward to what feedback people have or what questions they may want answered.

1. What life events shaped into who you are today? 

There are many things throughout my lifetime so far that have formed who I am now, along with my opinions and ideas. The first major one is my parents’ divorce when I was nine years old and in third grade. I believe it forced me to grow up faster and rely on myself more. Also, I feel like it caused me to be more independent life. The second, and biggest, was when my accident happened at the age of 16. It changed my thinking, allowing me to live life differently. It’s also challenged my thoughts along with patience towards others’.

2. What advice has stuck with you over time?

The biggest advice I’ve gotten and has stuck with me to this day is never take life for granted, you never know what’s going to happen. Accept without verification what you have and appreciate the things around you. In my situation I don’t have a lot of independence and require the use of others for just about everything. In the past, I never realized that anything could happen at any time; to hold on to the special moments and people that come about.

3. What is the day of a quadriplegic like?

I’ve often been asked what a typical day is for being a quad. While every quad is different, I can confidently generalize that with being paralyzed and fully reliant on others, one spends a minimal of several hours a day dealing with spinal cord injury care. Although I can only attest of my own experience, I can say for myself over the past 18 ½ years that I’ve had to modify the prospects about how much I can get achieved in a single day.

Life as a quad is different than someone who is able bodied. When I’m not dealing with any sort of medical issue like urinary tract infection or respiratory infection, I still have to focus on other daily tasks and how I’m going to get everything done in one day. Then there are those days where I have too much time and can’t seem to fill it up with things to do fast enough. Also, since I’m not working at this point in life, I can easily get bored without enough things to do. On every given day there so many things we need to look out for-it’s incredible.

4. What is the toughest part about being a quad?

The toughest part as mentioned before, is lack of independence. Having someone around constantly, helping me with my every need is a difficult task to handle. I believe it’s complicated for others to imagine an injury that is more emotionally and physically devastating and draining than being a quad. Those who are quadriplegics, face difficult obstacles in all aspects of their life. This includes a lack of privacy within their personal, family and professional lives.

5. What are the top things you’ve learned over the past years?

Despite losing function and breathing from the neck down, I have learned that it is possible to recover after a spinal cord injury. This includes both mentally and physically, although it takes a lot of mental power, determination and will to do. It also depends on the severity of the injury, along with how aggressively recovery is pursued. I believe having a positive outlook on life and staying motivated along with hopeful is key. 

Life as a quad can always vary depending on spinal cord injury challenges. I like to think of myself as a positive, compassionate and understanding person. I have many people to thank for my success of where I am at today, including friends, family and caregivers. Despite surviving as many years as I have with a SCI and continuing to thrive, I have many more accomplishments I’d like to get done. I know that one can only do so much in a lifetime, but I remain hopeful that my footprint will leave a mark in the sand.

Jenni

What Happens In An Emergency?

Every person with a disability has different needs in an emergency or matter of fact situation. It’s crucial that each person take stock of their own needs and required supports. This includes being able to assess the situation and how they can meet those needs depending on what the situation is. As far as me having a spinal cord injury, there are certain things that I need that may be different from others.

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 require 24/7 nursing, especially if something went wrong with my ventilator or tubing, it’s very important that someone is always within earshot. This is one of the positives to having a nurse with me all the time. Although I don’t always want someone with me everywhere I go, I need every hour I can get with them.

What do I do if something comes disconnected on my vent or tubing? If something comes disconnected, the first thing that happens is my vent will alarm. That notifies the persons taking care of me that something has come disconnected but doesn’t tell you where it is. Then if they can’t find the area within a couple of seconds, they grab the Ambu bag and start bagging me. It’s difficult to bag me and find where my tubes came apart at the same time, so if someone is around to help it’s the best scenario. Although, if not my nurse has to do both at the same time.

Every place I go, my nurse comes as well. If I’m just going outside for a roll, they load my wheelchair with my portable suction machine, oxygen, and a backpack that has supplies in case of an emergency including an Ambu bag. If I’m going to an appointment, I still bring the suction and oxygen, although instead of the backpack, I bring a rolling suitcase. In the suitcase is everything that’s in the backpack along with other supplies, because I take it when I’m going to be farther away from my house and for a longer period of time.

Along with emergency and extra supplies, my nurses pack their charting sheets along with a travel chart. In it is an up-to-date list of all my prescription medicines. Included is their generic names and the dosage amounts. Also, there is a list of my allergies. I also bring my medical alert card with information about my medical needs, along with my insurance and medical assistance card. It’s important for me to bring along a list of all my doctors and emergency contacts as well, just in case.

Jenni

Fifth Year Raising Monarch Butterflies

This year, I found one Monarch butterfly on a milkweed plant across the street from me. Milkweed is their dependent food source and where they lay their eggs. It’s also a weed that grows wild all over the place. Although I eventually want to plant some, I don’t have any in my yard, but my neighbor has a few stocks, and my friend has a bunch in her yard.

After I found one, I texted my friend and asked if she could bring by some milkweed for the caterpillar. She hadn’t looked on hers yet this year, and when she did, she found 8 more! She brought them all over along with more food for them. So, in the beginning that was a total of nine. One was small, and it died within a week of having it. The rest spun into a chrysalis all within a few days of having them.

So far, I’ve released six. I gave one to one of my nurses, and the last one is drying its wings and I will release it later on. I know when to let it go when it begins moving around in the container and starts flapping its wings back-and-forth.. It takes about two weeks for them to undergo a radical reorganization of its tissues before it breaks free. Once they do, it takes about 2-4 hours for its wings to dry, and then I can release them. I was able to see all of them go from caterpillars and then come out into beautiful butterflies!

Since I had so many, my niece, Avery, got a chance to help release a couple of them. Like me, she likes butterflies as well. When she is a little older, I’ll probably give her a caterpillar or two to take care of and watch the whole transformation. Also, it is easy to tell if they are male or female if you can get a glimpse of the right area. The males have two black dots on the top of the bottom two wings. The females don't have any dots on their wings. So far I've released three males and three females.

Avery is so photogenic! Both of these butterflies are male.

Male butterfly on my arm.

Female butterfly

Jenni

What's Been Keeping me Busy?

Lately I’ve been busy with the ABLE program at Courage Kenny. It’s going great so far, and I am learning a whole new way of exercising when I’m unable to move. It has been challenging and exhausting, but beneficial to my health and healing. I spend 2 ½ hours, twice a week doing a nonstop workout, which includes transfers from the bike, the mat and to my chair. This doesn’t include drivetime there and back. I’m grateful that I started and can’t wait to see what results may come of it. I know one thing for sure is that I have already gained an improvement in strength, and I’ve only gone five times so far.

Aside from this, I have been getting outside when the weather is tolerable. It’s been hot and humid here, which makes it difficult to take Brody for a walk and roll. I try to stick to the shade as much as possible so that the pavement isn’t hot on his paws and the sun isn’t hot on me. Not only is it much cooler he seems to enjoy his walk more without overheating. When the weather is like this, I need to take him in to get his haircut more often.

Along with exercising and getting outside, I’ve been having Dr. appointments and going shopping at the mall. Now that restrictions on masks in public have been lifted, I have felt more comfortable getting out in the public. Although they are still required in clinics, including Courage Kenny, it feels good to not have to wear them all the time. Since I didn’t go out too often in the last year and ½, I’m not used to the masks as much as other people. I’m still a little skeptical of other people, because lifting the restrictions may give even those who haven’t been vaccinated an excuse to not wear a mask.

When I am inside, I’ve been playing games, painting, watching movies and going on my computer etc. To pass the time by, I like to play games with my nurses. Depending on which nurse works, depends on which game I decide to play. I don’t watch movies all that often, but when I do, I usually pick out ones that are most popular. Between my sister and I, we have Netflix, Amazon Prime, Hulu, Disney plus, Discovery plus and cable. Also, because of lack of movement, I don’t check my phone as much as others, except texting and phone calls. I use my computer for emails, writing blog posts and other things.

I’ve also been spending time with my sister and two nieces. I enjoy watching them grow up and spoiling them at the same time. Since I don’t have kids of my own to spend money on, I end up buying things for them. This includes clothes, toys and other things they may need or want. Avery will be eight in August and Madilyn will be one in October. I usually see them one or two times a week and is always a highlight.

Jenni

Showcasing Abilities

I remember this video like it was yesterday. Even though it was almost 7 years ago, I still feel the same to this day. I talk about showcasing the abilities of people with "dis"abilities. It's a concept that I've been sharing with others since my accident, especially during my public speeches. Also, a constant reminder to those around that there are misconceptions about those with disabilities. It’s about what disability means to me.  

Jenni

First Session at ABLE Program

I had my first session at ABLE yesterday. My mom was able to drive me in our van and pick me up. Sometimes I will use transportation, but for the first session it was good getting the feel for how much time I needed, including drive, transfer and session. When I got there, I saw that there were two physical therapists that would work with me at a time. Then the main PT talked to me about which two exercises I was going to do, and then went through a plan of the order and how long each one would take I would do. 

Using the Bicycle

The first exercise I did was called guided exercise. They transferred me to a bench and laid me down on my back. Then they strapped my feet to pedals like on a bicycle, although my legs were bent upwards. The therapists stood on each side of me and moved my legs simultaneously like I was peddling. After about 10 minutes, they strapped my arms up and as they moved my legs, my arms moved at the same time as my legs. Overall, I did it about 17 minutes, although in the future the goal is 20-30 minutes.

After this, they transferred me back to my chair and I repositioned it alongside a table mat. Then moved me to the mat so I could use electrical stimulation. They put electrodes on my abs, obliques, lower back and between my shoulder blades. After hooking them up to a machine that made them stimulate, the PT started with firing each spot separately until I could feel it. Then made them all go simultaneously, which made me spasm and worked my muscles. I did this for about 40 minutes, but the goal is 60 minutes total.

At the end of the session, my nurse said that before I went, she was nervous about how everything was going to work out. Then, the PT admitted that he was too, especially because the center had never had someone on a ventilator do any of the exercises before. I was excited but also a little bit nervous. Mainly for the fact that I wasn’t sure if everything would work out okay and if I would have the stamina to complete everything.

I’m glad I started and stuck with it, because everything worked out great! It took a while for me to get situated with each exercise. Next time, I’m planning on getting to Courage Kenny about ½ an hour earlier so that I have time to get through every exercise goal. After everything, I was very tired, and was exhausted as soon as I got back in bed. I slept while doing range of motion and even 30 minutes after. Usually, after I transfer into bed, I start range and it takes about half an hour and then I sit up and go on my computer for about an hour in half.

I am very hopeful that after the first six weeks session that I will have improvements in overall health, fitness, strength and possible feeling. One of the biggest goals is to gain movement. Although I may have a while until I get to that goal, I know with some hard work and dedication, that day will come.

Jenni

“Strength grows in the moments when you think you can’t go on but you keep going anyway.”

-Anonymous