News about ABLE

After my appointment almost 3 weeks ago, my orthopedic doctor told me that based on the x-rays, my knee fracture is healed. Even though it still hurts, he said it’s probably from the torn meniscus that happened back in 2019. He gave me a nice knee brace to wear. If it doesn’t feel better in a few months, he wants me to repeat an MRI on it to make sure everything looks okay.

The only problem is, if it is still my torn meniscus, there is no way for it to heal unless I got surgery on it. The only reason I would get surgery is if I was using it a lot, which I’m not. Good news, I was able to get an assessment done at ABLE almost 2 weeks ago. Bad news, they filled my spot Wednesdays and Fridays. Although they were able to squeeze me in with my same person every Wednesday from 1 PM-3:30 PM.

At least one day is better than nothing at all. Plus, I’m just slowly easing back into it since I haven’t been there in at least three months. Last Wednesday was my first day back. I was able to start back right where I left off which was good. At least I didn’t have to start from the beginning. That would mean losing any of my core strength or movement that I gained previously. Although I was sore and tired after my first session back!

Hopefully I will be able to gain another day during the week, even if it’s with a different person. Even though it feels better to stick with the same people because they know the routine and the process goes smoother, I’m open to change. Years ago, and even sometimes now (depending on the situation), I wouldn’t be able to say that. Anyways, I’m happy to be back there again because I really missed it.

Now that there’s snow on the ground and it’s colder, I haven’t been getting outside as much, unless it’s to an appointment. Other than yesterday, Brody hasn’t gotten his daily walk and rolls like usual. I’ve been trying my best to do things other than just watch TV. Listening to audiobooks, writing my book, playing board games with nurses, and wrapping presents are just some examples.

Jenni

Fall Update

I will be getting my booster COVID Vaccine, and my flu shot December 1. I also contacted my doctor about getting a new set of x-rays for my left pinky and knee. I’m hoping my hand is all healed up, so I don’t have to wear the brace on it anymore. Also, it’s been a long time since I injured my knee. Last time I got an x-ray of it they told me it was no worse but no better.

I really hope it has at least gotten better because if it doesn’t heal quickly, I’m afraid I’ll lose my place at ABLE. I miss going there, getting some exercise, and making progress. Since my accident, I never thought I’d be able to do as many things as I’ve accomplished since starting the program. It’s important to me that I keep it up, especially because I felt a sense of independence and new strength since I started.

Last Sunday my power wheelchair stopped working. I couldn’t drive it, or re-position and an error code flashed across the screen that I look at to operate it. Based off the code, the company I use for equipment was able to try to figure out what was wrong with it. They thought it was the motor which would take 7 to 10 business days to order a new one plus the time to replace it and get it back to me. They took my wheelchair on Tuesday and left me with a crappy, loaner manual wheelchair.

Although they figured out within a few days that it was just a faulty wire on a control panel. The company was able to bring it back to me Thursday late afternoon. Since independence is so important to me, being without such a vital part of my life was very difficult. Because it wasn’t fitted for me, I was only able to spend roughly 2 hours in the loaner wheelchair on Wednesday morning. Thursday morning, I got up in my shower chair for an hour.

I spent the remainder of the time in bed, trying to reposition as much as possible so I didn’t get sore or uncomfortable. I realize how lucky I am to be able to move about and get out of bed every day. There was a low point in my life when I didn’t want to get out of bed for a few days, because I thought to myself “what’s the point of getting up when I’m just going to get back in bed again?” I’m glad that others intervened and got me out of that state of mind. 

It’s been five years already since I got this wheelchair. That’s the point when insurance will cover a new one, so I am in the process now of pursuing that. It took a year and ½ to get the one I have now after starting the process, so I’m guessing it will be about the same for another one. That’s why I am starting the process now.

Now that I can be in my wheelchair, I’ve been going for a walk and roll outside every day while I’m still able to. The weather is getting colder, and snow is on its way! I do take Brody out in the winter, even if there’s snow outside although only if the streets are clear. Hoping to go more places soon other than just the doctor’s office; it’s just difficult if there are a lot of people around. Maybe the mall is the best place because I can stay away from others.

Even though Christmas is 1 ½ months away, I’ve already been looking for gifts online. I prefer to shop online more than the stores because I can find what I’m looking for easier. The best time for me to order things is on Cyber Monday. Although you never really know how good it is unless you look at prices beforehand! I think Black Friday, especially for someone like me, is crazy. People wait in line for hours to try to get the best “deals” and fight over others. Also, you never really know how safe it is since COVID still exists.

I’m still plugging away at my book. Since starting to write it myself, I think it’s best this way instead of having a ghostwriter. I have found a groove and style of writing that I want it in. Hopefully I will be finished writing by next year and then I can find an editor to help me. It depends on how fast and how much time I invest into it. I believe I already written almost 10 chapters, but don’t know how long the book will be yet.

Jenni

Advice in Life

“When you hear good advice, you should do two things with it: take it and pass it on.” Anonymous

Life is full of things in which make you think about what happened and how you plan to move on from there. In my case, the biggest situation is after my accident. I had to realize what happened to me, choose how I was able to overcome my situation and move past the challenges ahead. I will admit it was very difficult. There were days I struggled to accept and see a future in which I fit into.

Today marks the 19^th anniversary of my accident. I have said before that this day doesn’t frighten me and I don’t get sad or angry. Although I do admit that I think about how my life would be if I hadn’t been so accepting to a situation that changed not only my view on life but my life itself. Thinking back, I realize that there were times when I went through a grieving process of losing my independence and the loss of movement/feeling.

It took not only my mom, others around me and myself to be able to overcome every obstacle that came my way to get to the accepting stage. For a while, I saw a therapist to help me handle all the emotions I was dealing with. Throughout the years, I have been given a lot of advice. Mostly good that I could get some use out of and some that didn’t really apply to what was happening to me.

It is nice to share how I’m feeling with people who can understand and may be going through the same thing as me. This way it’s easier to be honest and open with them. I also like creating my blog posts, kind of like a diary for me, only openly shared to anyone that comes across my site! Although it’s a way for me show others what life like is like as a quad, hoping to inspire people throughout my journey.

Jenni

Writing My Memoir

I’ve always thought about writing a memoir about what happened to me and my journey throughout life, especially since I love to write. It would also create connections and hopefully bring joy along with inspiration to others. I already have many ideas and have even started organizing chapters. I know it takes a lot of time, effort, dedication and skill to write a memoir. Although I have a lot of time, since I’ve been waiting for my knee to heal before going back to ABLE. Also, I have a whole blog full of posts in which I can use for ideas and inspiration.

I’ve been researching online about how to write a book and get it published. I have also been contacting people I know that have written books and memoirs to see how they went through the process. At first, I thought of using a ghostwriter. This entails having someone else write it for me. They would interview me for 3 to 5 hours, gather as much information as they possibly could and then write a first draft. After, I would read it and add or take out anything I didn’t want in.

There are some pros and cons to using a ghostwriter. If I was in the position where I have been wanting to write a book but just haven’t been able to get it done, then I’d consider using a ghostwriter. They can turn my ideas into a publishable draft if I was at the point that writing it on my own was not going to happen. It also saves time, because they can get it written within 4-6 months. 

However, since I’m just beginning the process, I’m not at that point right now. I’ve read that there are some downsides to going this route. I saw that there could be a fair amount of plagiarism. Plus, nobody knows my story like I do. Even if they interview me, the book may come out being something different than I want it to or expected to be.

I’m not sure how long it will take, but I’m hoping that by using my time wisely and slowly working on it, bit by bit that soon enough a first draft will be created. Then with the help of an editor to put it together in a way that makes sense, a final draft will be completed. I’m not sure how many chapters I’m going to write yet. Some people have told me that the shorter the book, the better the read. Others said to just write your story and whatever comes out will be great.

Please feel free to comment if you have any suggestions or ideas for me. Remember, when you make a comment, it’s not going to show up right away. I need to moderate and accept it beforehand. I would appreciate any feedback. Thanks!

Jenni

My Hand

About two weeks ago, my nurse noticed that my left hand was bruised and swollen under and on top of it, along with my ring and pinky finger. We weren’t sure what happened, but I wanted to give it a few days in case the swelling went down. After waiting, the swelling went down a little bit and the bruising started to fade some. Although just to make sure nothing serious was going on, I decided to get an x-ray of my hand.

I ended up going the beginning of last week. I got an x-ray of my left hand and both my knees. My orthopedic surgeon wanted to see how my leg is healing; it’s been about 3 ½ weeks since he told me to rest my legs along with keeping them at a 45° angle or less. The on-call doctor called me later that same day and told me that I have a small nondisplaced fracture at the base of my pinky finger. I made an appointment to see a hand orthopedic surgeon and went yesterday.

When I went today, the hand orthopedic surgeon showed me my x-ray. She told me that it was in place, so I didn’t need surgery. She recommended that I wear a hand splint for at least 6 weeks. It will probably take about 8 weeks because she said my bones are more fragile. When they put it on me this afternoon it started hurting right away, then dissipated after an hour or so. 

After about 3 ½ hours, my arm started jumping and spasming. For me it’s usually an indicator that something is hurting or uncomfortable. My nurse took it off at that point and my arms subsided. I may have to wear it on and off for a day or two so that my hand gets used to it. The orthopedic doctor told me to keep it on most of the time except when I’m washing up.

With non-displaced fractures, the bone typically stays aligned in an acceptable position for healing. The splint will immobilize the injured bone, promote healing, and reduce pain and swelling. She also recommended that I keep it elevated and apply ice to it as often as I can. I will need to just keep using the splint for longer periods of time each use until my hand starts to get used to it. Other than the stress fracture in my left knee and my fractured tibia in my right, I haven't had any other injuries to my body.

Jenni

Changing Seasons

 

“To be interested in the changing seasons is a heavier state of mind than to be hopelessly in love with spring.” -George Santayana

Cold weather helps us appreciate warm weather more-and warm weather helps us appreciate cold-weather. With the change in seasons there are so many things to appreciate. During the course of a year, we watch trees change from bare to green to orange and red and gold to brown and back to bare again. Then there’s the miracle of budding and greening all over again the next year.

“As I enjoy the change of seasons, I can enjoy the changes in my life.” -Anonymous

The above quotes and saying is from a book I have called The Daily Book of Positive Quotations by Linda Picone. As we welcome fall today, September 22, this one is from yesterday’s date about the change of seasons, but also about the changes that we go through throughout life. I found this especially significant to me, as I went through a drastic change in my life: going from an active teenager to paralyzed from the neck down in a single moment.

Throughout everyone’s journey they will experience some sort of change in life, whether big or small. Some examples are puberty, graduation, marriage, the birth of a new child, empty nesting, divorce, new job or retirement, death and more. These events may bring on stress or worry about what comes next or happiness about what the future might hold. One important part about change is how we anticipate it and react to it. Another way to prepare for changes are when we learn to trust ourselves to handle any situation.

Change takes time to get used to, whether in life or business. Don’t worry about what you may lose and start focusing on what you may gain. It’s not always about trying to fix something that’s broken but maybe it’s about starting something over and creating something better. It doesn’t matter what type of change you might be going through or up against, just know that you will learn to cope.

Jenni

Life As a Quad VI: Anything Is Possible

After sustaining a C-1 C-2 spinal cord injury, I have always had a positive outlook on life despite what happened to me. The idiomatic saying "anything is possible" means we cannot predict with any degree of certainty what will happen. Also saying "anything possible" is a way of responding to someone who makes a conjecture about what s/he wants to happen, but which is not a guaranteed outcome. Thus, I think that things happen for a reason and that we have the power to choose how we want to live certain aspects of our life.

Before my accident, I was a typical, active teen teenager living my life to the fullest. I played sports, hung out with friends, and enjoyed going places. I try to uphold a connection on a spiritual and physical level with the things that are achievable, even though not all my physical activities are within reach today. This also means having a good attitude, great expectations and the belief that “anything is possible”.

Even though the road to recovery can be long, it’s important to remember that there are people supporting me along the way and that I can do it if I have the strength to believe it. Life as a quadriplegic paralyzed from the neck down does have its challenges, although I feel like there are no limits to what someone with this injury can do. This is especially true to today’s technology and the improvements that are being made every day.

I have managed to live with my injury despite how challenging, frustrating, and life changing it can be at any given time. It is shown that people with a high-level SCI like mine cannot only interrupt one’s body, but also daily activities, important occupations, and entire lifelong plans. Despite feeling helpless in the beginning, I’m glad to be alive and take every moment for granted. 

Jenni

“When you have an ability to adapt and overcome, clarity about what you want in life, purposeful persistence and a “make it happen” mentality anything is possible.” - Anonymous

MRI Results

I had an MRI of my left knee a week from Thursday. My orthopedic surgeon video called me with the results a couple days ago. He showed me the MRI and explained to me what the results showed, what it implied, and how to move on from here. I also received results through My Chart, a device used to talk with physicians and review test results. 

When I received the results through My Chart, it’s always difficult to interpret unless someone explains it to you. Although this is what I saw on the test results page:

IMPRESSION TECHNIQUE: Routine MRI of the left knee was performed without contrast.

IMPRESSION: 

1. New bone infarct in the proximal mid tibial metaphysis.

2. New mild subchondral marrow edema in the posterior aspect of the medial tibial plateau without subchondral fracture may represent stress reaction or osseous contusion.

3. No MR evidence for acute meniscal or ligament tear.

4. Stable free edge fraying versus partial tearing of the inner third of the posterior horn lateral meniscus extending into the posterior meniscal root.

5. Diffuse acute and chronic denervation changes of the visualized muscles of the lower leg.

The way my doctor described it, was that I have a proximal mid tibial metaphysis. In other words, a stress fracture on the posterior side of my left tibia. My doctor suggested that my leg should stay at a 45° angle or less than, straight being the best and 90° being the worst position. I went to ABLE yesterday and discussed my situation with them in a very lengthy conversation on how to proceed from here.

At the end of the discussion, we decided that it would be more ideal that I take the next 6-7 weeks off from the program (starting this coming week). Since my doctor told me that it would take at least six weeks for the fracture to heal, I found it most ideal to take at least this amount of time off. Also, since my doctor has suggested that I stay at a specific knee angle for the next 6-7 weeks, it would be difficult to transport to and from my appointments. Ultimately because getting in/out of the van I am required to bring my knees in to a 90-degree angle which my doctor has suggested to avoid. 

I felt that it is best to focus on healing for now and plan to return when I am ready, and my fracture is all healed. I did have a few questions for some of the people at ABLE regarding my return. I was wondering when I returned what my schedule would be and if I would still have the same lead person that I was working with. He explained that since I’m technically taking a medical leave, that I wouldn’t lose my spot in the program, and they would most likely keep me placed with the same people.

This was great news to hear! Hopefully I heal fast and have a speedy recovery rate with no to little side effects. I’m sad to have to take time off because I’ve made so much progress. Although even if I lose some of the strength and improvements I’ve gained, I’m positive that I will quickly get it back quickly since I haven’t lost the ability to know which muscles to use in order to move. 

Also, at some point, my doctor wants me to get x-rays of my right leg. A while back while doing ABLE, I felt like I injured my right leg, almost exactly where I injured it before. While lying flat, my leg won’t straighten completely and rotates out words. After I explained it, he thinks that it’s not too big of a deal, but still wants it checked out just to make sure.

Jenni

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

Using my Knowledge to help Others in Need

I've always been a kind, generous, giving person and put others before myself. Although more so now that I know what it’s like from a perspective of someone with a disability, more specifically a spinal cord injury. I need constant help and support from those around in order to live a happy, meaningful and fulfilling life.

I’ve seen firsthand others in similar situations who need support and guidance in their life in order to get through tough times. I have been there before. I’ve struggled to find my place in a world that has a difficult time accepting those who are different from them. When it comes to people with disabilities, I had to unpack a lifetime of negative messages.

One thing that’s unique about my situation is that I never had any anger after my accident. I’ve figured, what kind of life would I be living if I went around being mad at everything that happened to me. I find it fatiguing to go over tireless circumstances, feeling like a victim of something, and self-pitying because I don’t feel it gets me anywhere. Although, I know there are those who have had similar things happen who may struggle with a different way of living and do question things constantly.

Through the last 18 ½ years, my accident has brought me many positives-including great friends, increased empathy, strength, forgiveness, appreciation, openness and a brand-new perspective on life itself. The thing that keeps me going is knowing that I can be there for those in need, along with the people who I care about most in my life. It has always been a part of my self-serving nature, even before my injury.

There are thousands of individuals and families affected each year who have encountered an SCI, and I believe throughout all the different types of disabilities, it’s amongst the most shocking life events one can experience. It often falls under that person’s friends and family to assist them on the hard road ahead to rehabilitation. Also, after this big of significant change, life is usually never the same again. One thing that’s most important is that those affected never give up hope.

This brings me to my next endeavor in my life, assisting others in need of someone who can understand the emotional and physical consequences of an SCI. There’s no doubt that the Internet has a lot of information, although it’s not always the most accurate and there is only so much aid those around can offer. So that’s where help and stories from someone in that same position come in and offer support. Within this is the expectation that they can show some sympathetic and kindness where it’s needed most.

I’m very proud of all the things I’ve been able to do to help out others in my current situation.  I know from past speeches, mentoring, my blog and volunteering that my accomplishments and achievements have not gone unnoticed.  I’m going to continue expanding my knowledge and helping people in need. I reached out to a few different mentoring programs and am in the process of becoming a peer mentor for a couple of different organizations. 

If you know someone who is in need of a mentor or you are interested, please let me know by emailing me at: jtic20@gmail.com.

 Jenni

“Everybody can be great. Because anybody can serve. You don't have to have a college degree to serve. You don't have to make your subject and your verb agree to serve.... You don't have to know the second theory of thermodynamics in physics to serve. You only need a heart full of grace. A soul generated by love.”

-Martin Luther King Jr.

Guest Blog Post by Brody III

I’m enjoying the weather right now, although it’s getting a little hotter and I don’t like to overheat. It makes me pant and I can’t go as long on walks with my mom. Plus, I’m getting a little older, and I’m unable to go as far as I used to when I was a pup. I turned nine in December.

Bailey and Casey

My mom’s dad’s dog and my best four-legged friend, Bailey passed away earlier this month. He was a black lab. I will miss him so much! My mom misses him also. Although nothing can replace him, I now have a new best friend. His name is Casey, and he is a pocket beagle. He is six months old and just my size. When he comes over, we love to play in the backyard. He plays with all my toys and lays in my beds. Since I’m older than him, I only like to play for a little while. Then just like humans I like my space and time to myself.

I’ve been enjoying my time lately by sleeping on the couch, going for walks, and playing with toys. I only chase after a toy once, but I don’t know how to play fetch. My favorite thing is getting attention from anyone who will give it to me. I love to be petted and scratched on my back. Although, I only like it for a little while, and then back to more independent time on the couch or in one of my multiple beds. I find it comforting to bury my head against my bed, couch or under a blanket.

Me Sleeping on the Couch

Brody

ABLE Program

The other day, I went to Courage Kenny center for an assessment. I was there for four hours, from 12 PM-4 PM (not including the drive there and back). They have a program called ABLE there that helps people with certain types of disabilities. They are brain injury, cerebral palsy, multiple sclerosis, spinal cord injuries, stroke and other neurological diagnoses. The program of exactly what they do is described in the next paragraph in a quote taken from their website:

“If you are living with paralysis or a neurological condition, the ABLE: Activity-Based Locomotor Exercise Program, may help you. ABLE is based on the most up-to-date scientific and clinical evidence. It’s designed to speed up recovery after a spinal cord injury. The objective is to help your brain and spinal cord relearn motor patterns associated with standing and walking. The ultimate goal is to increase your mobility and improve your health.”

The Treadmill

In my assessment, the PT and OT first brought me into a room that had a treadmill in it. They told me that if I were going to do it, I would get up into a harness and onto the treadmill. Then they have people who would assist me in walking on it. I decided I would wait on getting up on the treadmill because my ventilator tubing (8 foot) wouldn’t reach from my chair to me standing on it. I knew this for sure because I had an assessment a couple of years ago and tried but it wouldn’t reach.

Then they brought to me into the assessment room and first asked me a bunch of questions. Most were on a scale and included questions about my history, feeling, movement, activity level and many more. Then they transferred me to a memory foam chair. First, they laid the chair back all the way, took my blood pressure three times in a row, and then sat the chair up fast and took my BP 10 times in a row. They wanted to see how my BP would hold up in an upright position. My BP went down slightly, but not enough to where it was concerning. This was important because since I have a spinal cord injury, my BP usually is on the low side, and I need to take medication for it.

After this, the OT took measurements of me and then tested my movement. She had a device that beeped when something pressed against it. It’s a way to measure movement based off if it made noise, how long the beep was and how hard the pressure was. Out of all the places they tested, I was able to make it beep once when I tried to pull my right arm back. After doing the program for a certain amount of time, they will revisit this test to see if I’ve improved on movement.

In order to check my balance, they transferred me to a table mat. I sat up on the edge of it to see if I could sit up without assistance. After being held for a few minutes, I was able to balance myself for about 15 seconds. I used to do this with my physical therapist on the edge of my bed. Also, they checked to see if I was able to use my ab muscles to pull myself forward and back muscles to pull myself back. I was able to fire my back muscles, but not the front.

Table Mat

The last thing they did before transferring me back to my wheelchair was had me stand up. There were 4 people that helped, one in back holding my backside, one in front holding my knees, and 2 on each side of me grabbing under my armpits. Simultaneously, up I went for about 10 seconds until my left knee buckled. It still hurts a little sometimes from when I injured it a few years ago standing in my wheelchair. Although I've been wearing a knee brace at night and that's been helping.

I believe in this program and have proof from a friend of mine that’s in it that it works. His injury is below mine and not on a vent but is paralyzed from the shoulders down. He’s been going there for over three years and has gained a lot more movement than he had before. He used to use a sip and puff to drive his wheelchair like me, but now he can move his arms enough to drive his chair with a joystick. He also said there were other people who have gained more movement since starting. These are just a couple examples of the benefits that the ABLE program has.

Overall, it was helpful to do the assessment to see where I’m at now and how far I can advance in the future. When I start, I will be getting on a regular schedule of twice a week, for 2 ½ hours at a time. If I were going to do the treadmill as well, I would be there for longer. The first session is for 6 weeks in a row and then they will assess me again. I can’t wait to see how much I progress over time. I’ll keep everyone updated as time passes!

Jenni

Patience in Life

In my situation, it takes a lot of patience in order to live a happy and fulfilling life. It’s naturally an essential part of daily living, but especially when I have little to no ability to do things on my own and rely on others to do them for me. Having patience means being able to wait calmly in the face of hardship or frustration, so anywhere there is some-i.e., nearly everywhere-we have the chance to practice it.

We give ourselves the power to choose how to respond to specific situations when we are patient. It allows us to stay collected no matter what is happening. I’ve learned this throughout my life of being paralyzed because of my needs from those around. I need to wait every time I want something done. One thing to remember is that patience puts us in direct power of ourselves. Along with this, there is no more influential an aid to success then confidence.

So, how does one practice patience? It seems that at an early age we are told that patience is a virtue. However, very few of us are ever taught how to be patient. Patience is something we constantly do, not something we have. The more we practice it, the more patient we become. I know I need to remain calm throughout every obstacle that comes my way in life. Included with that, it’s only through patience that we truly learn.

Jenni

Donating My Hair

The other day I got a well needed haircut. It was a couple inches past my elbows. The last time I got it cut was almost a year to date. Last year, I wrote a post that said that I was going to get 10 inches cut off and donate it to locks of love. It was down to my elbows at that time. Although I ended up just getting 4 ½ inches cut off. This time I got 10 inches cut off and have yet to send it in to locks of love. It will be my fourth time doing it.

The last few times I’ve donated it, my hair afterwards was above my shoulders. This time, my hair was so long that it’s still shortly below my shoulders. It’s so thick and healthy now! It always seems so short once I get it cut, but my hair grows so fast. I always need to remind myself that it’s just hair and it will grow. Also, that I am doing it for a good cause.

Alopecia areata, cancer radiation therapy and severe burns are just some of the reasons why someone could lose their hair. And hair loss is not just a cosmetic concern-it can also seriously affect someone’s mental health. Hair donation gives people a chance of high quality, free, natural hair wig for free. It can also help someone restore emotional balance and regain self-confidence.

Locks of love is just one of the organizations that accept hair for donation. Some places require 12-14 inches or more of hair, but most require a minimum of 10 inches or more. There are some that only require a minimum of 8 inches or more. I like to do at least 10 inches because I have the stylist layer my hair, and when you donate it, they separate the longer and shorter pieces. Locks of love requires 10 inches or more. Also, if you send it in yourself, you get a laminated certificate saying you donated.

Jenni

COVID 19

Now that COVID vaccines are available, I feel more comfortable getting back out into the world. Before, I was so worried about getting the coronavirus, especially in my situation. It’s such a big risk being on a ventilator if I were to get it, that I was avoiding most people, especially crowds. I’ve been staying home most days (except for my daily walk and roles with Brody).

My nurses are still required to wear masks, even if they are fully vaccinated and I am too. My nursing agency is going by the state guidelines and until they hear anything otherwise, N95 masks and shields are required. It will be interesting if, and when they tell people they don’t have to wear masks anymore. I doubt it will be anytime soon though. It’s difficult for me to wear a mask because it’s hard to see my screen on my wheelchair. Also, since I use a sip and puff to drive it, I need to put a hole in it in order to use the straw to drive.

Good news is studies show that at least 50% of eligible Minnesotans have at least one dose of COVID 19 vaccine. And now that the governor has opened it up to 16+, even more people are signing up. It also means that spots are filling up, and there aren’t many appointments available. That’s why I had to get mine done so far away. My second dose is this coming Friday and then I will be fully vaccinated!

Jenni

Update

On Friday I had my first dose of the COVID vaccine. I ended up getting the Pfizer one which is two doses. My next one is scheduled for three weeks from Friday. I set the first appointment up about a month before it, and the only place nearest to me that had availability was regions hospital. Regions is in St. Paul which is about 30 minutes away from me. It’s actually connected to Gillette Children’s Hospital; that is where I spent over five months after my accident. Good thing is I didn’t have any side effects from it.

A couple weeks ago, I ended up with a respiratory infection. The reason I knew I was sick was because I had to constantly be on oxygen (I’m usually on room air). Also, my nurses were suctioning me more frequently and my secretions were colored. They were able to determine that it was 50% staph infection and a mixture of a couple other infections with a sputum culture. I was put on an antibiotic for 10 days and it’s all cleared up now. I’m glad that it wasn’t anything bigger than that being how sick I felt.

One positive thing is that since I’ve been off my seizure medication (Depakote) after my recent hospitalization, I’ve noticed some significant loss of water weight. It’s pretty much everywhere, especially in my face, arms, legs and stomach. My hands are where you can see it the most. They used to be super puffy and have a lot of pitting edema. Pitting edema is something that I had a lot of in my body. It is when a swollen part of your body has a dimple (or pit) after you press on it for a few seconds.

I’m so happy that it’s helping me, and it’s only been a few weeks. I can’t wait to see how much more I will lose down the line. It will be a huge transformation for me. I still have a video appointment with the nephrologist soon to talk to them about how I’m doing since being off the medication. I’ll be glad to report the good news to them.

For Easter today my sister, her boyfriend and my new niece came over to visit. I can’t believe that she is now five months old! My other niece is now seven years old. I love being on an aunt because I get to be the fun one, I get the distinct honor to spoil them, and they can come to me for advice. I’ve also always loved having aunts for the same reasons.

Jenni

Past Pets and Moves

Corky

When I was born, my parents had a Springer Spaniel named Corky. Unfortunately, when I was a year or 2 old, he was in a car accident. It led to some complications later, and he ultimately passed away. I don’t remember much about him; I just have pictures of him and me when I was a baby. He was my first introduction to dogs. My parents also had a couple of hermit crabs that lived on the kitchen table. That was when we lived in Grand Forks, North Dakota.

We moved to Minnesota in 1993 into a duplex, when I was 7 years old. I started school here going into 2nd grade. About a year later we moved a couple blocks away into a house. That's when the pets started to come in the picture. I was in 3rd grade and 9 years old, when we got a cat and named him fluffy. We also got a lop-eared bunny rabbit we named Bo (short for Bojangles). I remember that both me and my sister had gerbils that we kept in our rooms. Mine was named snowy and it was albino (white), and my sisters was named stormy (Brown).

Fluffy

When I was in third grade, my parents got a divorce. My mom, sister and I lived there for another year and when I was going into 4th grade we moved into apartment. Unfortunately, they didn’t allow bigger animals, so we had to give both our cat and rabbit away before moving. Also, at that point my gerbil had died but my sisters was still alive, so he moved with us. While living in the apartment, we had a painted turtle that we named lightning. Both of us each had one hermit crab with painted shells as well. The turtle and crabs didn’t last very long.

Neke

We lived there for 1 ½ and then moved into a duplex. Although we wanted other animals at first, my sister and I settled for a beta fish, one for each of us. Then, my sister got another lop-eared bunny rabbit that she named Isabel (Izzy for short). At age 10, I got a ferret that I named Neke and I had him until he died at the age of 8. My accident was when I was 16 years old, and while I was in the hospital my mom and sister moved into a townhouse, one that was listed as handicapped accessible. I remember them bringing Neke to visit me while I was doing my rehab therapy at the hospital.

Rio (yellow) and Cole (gray)

In the beginning of 2005, we moved into the house that I live in now. It’s been completely remodeled to my every need. While living here so far., we’ve had 3 parakeets (first was Dakota; after him came Cole and Rio) and 2 cats (Ty and Toby) all of which passed at some point. Then, in September 2012, I got my dog Brody at 9 months. On December 20, he turned 9 years old and has been my buddy ever since. Every animal that we’ve had, I’ve learned responsibility, gained more compassion, and felt the love in return. I’m sure in the future there will be more pets and possible moves to come.

Toby and Ty

Brody

Jenni

Recent Hospitalization Due to Fluid Retention

 At the beginning of the month, I got Botox injections in my neck again. I’ve talked about getting it in the past, and how it’s benefited me. I do feel a difference once they give me the injections. My muscles get looser, I’m able to move my head more and I don’t have as much pain as usual. The downside to getting Botox is that I need to get it every three months for it to be effective. Also, for me, my neck gets tight so quickly that it only really lasts about a month.

A few Thursdays ago, I had a video appointment with a nephrologist. Over the past couple of years, I’ve been talking to several different doctors with all types of specialties, trying to figure out why I have so much edema (fluid retention). Most of them have narrowed it down to one problem, low albumin. Here’s a definition of how low albumin causes edema. 

“Proteins in the blood tend to pull water into our blood vessels (acting like a "water magnet"). When the level of protein in the blood is low, water may leave the blood vessels and collect in the tissues. Water in the tissues is called "edema".” I’ve done multiple tests that look at where I might be losing protein, since I eat enough of it and also drink a protein shake a day. There is medication that you can take to help raise it, but I haven’t gotten to the point yet.

One way to shed the water from my tissues and help with edema is to take potassium-sparring diuretics. They are designed to help reduce fluid levels in your body, without causing you to lose potassium, an important nutrient. Although one side effect to going on a diuretic (otherwise known as Lasix) is that it can cause low blood pressure. In fact, many people take it to lower their blood pressure as they cause your blood vessels to relax.

Unfortunately, due to my spinal cord injury, I have low blood pressure. I’m actually on a medication to help raise my blood pressure, so going on Lasix is a huge risk to me. Although the nephrologist that I spoke to said that since I basically tried everything to help get rid of my edema, she would want to see how my body would react to me going on some sort of diuretic. In order to do so, she wanted me to go into the hospital electively and they would be able to monitor me closely while attempting to shed all the fluid in my body using diuretics through an IV.

They happened to have availability a week after my video appointment for me to go in and I would spend at least three days, if not more, to help achieve this. Afterwards, it would almost be like starting fresh, with little to no edema and she could see if I gain it back, how long it takes, and then figure out an action plan from there. I’m excited but nervous at the same; I want it to work, but I don’t know what side effects I’m going to endure. 

**The beginning post was written the day that I went into the hospital, but I never got a chance to post it. Here is an update after being in the hospital.

Upon arriving, I was admitted to a floor that specializes in nephrology. I also met with neurology, cardiology, internal medicine, endocrinology, infectious disease, pulmonology, urology, and the general doctors on the floor. Each doctor looked at different parts of my situation to try to rule out what could be causing the swelling.

As each day was passing, they became closer to narrowing it down to what it wasn’t and what it could be. I spent a total of 12 days in the hospital, more than I expected, but enough for them to narrow the problem down to two reasons. One would involve neurology, and due to one of my seizure meds and the other involve cardiology, and due to a rare condition.

They took me off one of my seizure medications called Depakote and wanted to follow-up with me after a few weeks. This would be to see if it would help with me losing some of the water weight. After being off it for a few days now, I think it’s helped a little bit. I noticed that I’ve been peeing a lot more, which is a sign that I’m losing fluids.

If this doesn’t work, then the only other thing they narrowed it down to is a rare condition called capillary leakage otherwise known as Systemic Capillary Leak Syndrome. It’s when fluids or plasma leaks out of your capillaries into your tissues. It results in low blood pressure and can be dangerous, if not treated. The reason why it’s so rare is because there are not very many known cases of it and there is no known cure.

I’m hoping that it’s just my seizure medication and not the latter. Although since being off the medication, I have seen an improvement in my weight, so that’s a good sign already. I will keep you updated as time goes by.

Jenni

Continued Post

After the first day of standing again, I stood 10 more times for 30 minutes each out of the next 11 days. Although, on the evening of the 11th day when I got back into bed, I noticed that my left knee started hurting again. Each day since then, the pain has been off and on. Because of it, I've had to hold off on standing again.

There have been many of those days that I haven’t been able to do range of motion again because of it. I think what happened is that I may have pushed myself a little too much. I guess I was so eager to stand again after not doing for so long. Also, it felt great while standing and helped aid in changing position during the day along with fluid retention.

I’m thinking that the cortisone shot in my knee did help this time, since I was able to stand so many times afterwards. One unfortunate thing about cortisone is that there is concern that repeated shots might damage the cartilage within a joint. Doctors usually limit the number of cortisone shots into the joint. It’s typically shown that you shouldn’t get them more often than every six weeks, but no more than 3 to 4 times a year.

Other than staying off my feet, I have also been staying indoors most of February. The weather has either been below 0°F or in the single digits for a few weeks now. It’s not ideal whether for me to be outside, as my tubes can freeze, and my body can’t regulate its temperature. Today was 25°F and I was able to take Brody for a quick 15 minute walk down a couple streets. He was so excited to go and then crashed on the couch when we got back home. I haven't seen him like this for a while; he must have really needed the exercise.

Over the past couple days I created another abstract painting. It looks pretty similar to a lot of my other ones, only with different colors. I've been doing more smaller pieces, as it takes me at least an hour to get one done and my neck gets sore when I work on it. I posted a picture below.

Jenni

Standing at 90° Again

Almost 3 weeks ago, I got a cortisone shot in my left knee to help with the pain after injuring it again. I had gotten one before when I first injured it 2 years ago, but it didn’t help. I thought I’d try it another time to see if it would work. My doctor told me it would take about 2 weeks were to take effect; but I felt relief after one week. Recently, the pain started coming back, but only when my leg gets twisted a certain way or if my knee is touched in a certain spot.

When I saw the orthopedic knee doctor to get the cortisone shot, I asked him about standing. It’s been over 2 ½ years since I’ve stood in my wheelchair, all because of my knees. He said he doesn’t see a reason why I shouldn’t be able to stand, unless I was in a lot of pain while standing. I was under the impression by the previous orthopedic doctor that I saw that I shouldn’t stand. To me, this was great news!

A few days ago, I tried standing. Within the first 2 minutes, I made it all the way up to 90° for 30 minutes. This is amazing news, considering I’ve been holding off on the off chance that something could happen to one of my knees while standing. Even better, I have been standing every day since for 30 minutes since. I check my blood pressure about every 5-10 minutes just to make sure it’s not dropping.

There are a lot of benefits to standing for someone with a spinal cord injury, especially in my situation with such a high-level injury. Standing is the ultimate pressure relief because it helps prevent pressure sores and promote skin growth. It also stretches hamstrings and other muscles which results in less muscle spasms. It helps with stabilizing blood pressure, reduces extra fluid in the body, bowel and bladder function, increases overall well-being and enhances quality of life.

Although it gives you more stamina and aids in better sleep, for me it’s like doing a full workout, so it wears me out and I can get really tired. I’m definitely going to continue trying to stand every day for at least 30 minutes. I’m glad that I decided to try it again!

Jenni

Choices in Life

Life is made up of an endless number of choices. Most decisions, such as what you’ll eat for the day, are small and only slightly influential. It’s the big decisions-the ones that will change your life indefinitely-that are difficult to make. Every choice we choose can impact our life either in a good or bad way, it helps form us to find out who we are to ourselves and to other people.

When thinking about the occasions that I had to make big decisions, it was after my accident. The number of times which I had a hard time accepting my new normal was less than a handful. It helped that I had support from friends and family. I also had a positive thinking that things were going to be okay despite what happened to me. 

One occasion in which I had a difficult time was when I said no to getting out of bed for a few days in a row. I just wanted to not deal with all the "stuff" that I normally do every day. It took my mom to literally get me out of bed, despite me saying no, for me to realize how important it is for my mind and body to be in different positions. It was after that where I told myself that from then on, I was continually going to have to make decisions, good or bad, and choose how I wanted to live my life.

Also, since I went back to school the year after my accident, I was forced to be around a bunch of people, including the same peers as before. It did make it hard at times to adjust, but I would always tell myself that I'm in it for the long run, even if I didn't always believe it at the time. It helped me cope with those difficult situations and breakdowns. I know not everybody in this situation has the same feelings or ability to adjust their thinking based on what others tell them or what they tell themselves. 

As far as what I would tell someone in my shoes, I would start off by asking the question "what motivates you to get out of bed every day?” Maybe it would get people thinking about their life and what they are thankful for. We all have choices in our lives, and I think the biggest one of all is whether to walk away or try harder.

Jenni

“Choice is the most powerful tool we have. Everything boils down to choice. We exist in a field of infinite possibilities. Every choice that we make shuts an infinite number of doors and opens a number of infinite doors. At any point we can change the direction of our lives by a simple choice. It is all in our hands, our hearts, and our minds.” -Anonymous