Update to My Update

Unfortunately a couple days after my last blog post, I started showing signs of another respiratory infection. Based off cultured test results, they put me on a 10 day course of Cipro, a broad spectrum antibiotic that I’ve used before for respiratory and also bladder infections. Since I was suctioning so often and my infection was getting worse, they also decided to do an outpatient bronchoscope on February 14. The doctor also took another sample while doing the procedure.

Based off the results, it showed that my infection was resistant to the Cipro I was taking so on the 26 I went to the hospital to get a PICC line placed. My nurses are trained to administer the IV antibiotics at my house. I wish I could figure out what’s causing my back to back respiratory infections. I know that comes with being trach and vented, but I never used to get them like this before. It’s been just after 2 days of medications and I am starting to feel a little better.

The day before I got my PICC line placed, I went to the orthopedic doctor, exactly 4 weeks since I saw him last. I got a follow-up x-ray done on my right knee. He told me that it’s starting to heal on its own and wants to see me in another 3 weeks to check the progress again. Based on the results shown he said that it will probably be about 3 more months before I’m able to stand again. As far as my torn MCL on my left knee, that will just take more time to heal. Interestingly enough I still have pain on the inside of my knee.

Jenni

Down On My Knees

On Monday night, January 7, I noticed that when my right leg was in certain positions, it would cause my leg and body to spasm a little bit. I also had other symptoms like Goosebumps, high blood pressure and pressure on my chest. All of these are signs of autonomic dysreflexia, a common issue that people with spinal cord injuries get when something is bothering their body. Even though I have limited feeling, I knew something wasn’t quite right because of the way my body was reacting. Although I couldn’t quite figure out which part it was or how it happened.

The next day was when I saw that my right knee and below it was somewhat swollen compared to my other one. I wasn’t able to do much range of motion on my leg due to the feelings I was having and so I decided to make an appointment to see my primary doctor. They only had Thursday available so I took what I could get. When I woke up Wednesday morning my knee was almost twice the size due to more swelling along with some bruising!

When I went in, he took a look at my leg and didn’t think it was fractured or broken so I ended up not doing an x-ray like I thought I needed. Instead he told me I needed an MRI to see if something was torn inside. I wasn’t able to schedule one until Tuesday, January 21, because there were a lot of things that had to be done directly beforehand.

I needed to get there about an hour earlier than my appointment. Because the magnetic field of an MRI machine is so powerful even just being in the room is enough to pull someone’s glasses off their face if it contains metal. First they had to prep me to go into the room so I was transferred to a bed. My trach that I currently use has metal in it so then, they had to change my trach to a different one called a shyly. After that they switched me over onto a MRI safe ventilater.

Along with my right knee, about 5 months ago I started feeling pain on the inside of my left knee. Anytime it was moved a certain way or touched I would cringe. I went to another orthopedic doctor a month ago and he gave me a cortisone shot to see if it would stop the pain. He told me that if it continued to have an MRI of it. So as long as they were doing my right leg, they decided to do my left as well.

Aside from the hour it took to get me ready before and the hour it took me to put everything back together after, the whole procedure took about an hour as well (about 30 minutes per leg). I didn’t end up getting home until a little after 6 PM. As soon as I got home, I received a phone call from my primary doctor saying that they did find some issues and for me to follow up with the orthopedic department.

The soonest I could see an orthopedic surgeon was Monday, January 28, directly 3 weeks after I noticed something was wrong! Before I saw the doctor, he wanted an x-ray to see if anything had changed with my fracture. During the appointment he showed me the images of the MRI and x-ray, both clearly making visible the injury. Turns out I have a tibial plateau fracture in my right leg and a torn MCL in my left. He told me that if I were mobile, meaning walking on my legs, that I would need surgery on both of them.

Instead I was instructed that the fracture will heal by itself in about 6 to 12 weeks if I don’t "move my leg" too much. The torn ligament might take longer, if not at all and I’ll probably just have to wear a brace on it. It’s very unfortunate that this happened, especially because I look forward to standing in my wheelchair everyday along with doing stretches on my legs. On the contrary I’ve been doing good respiratory wise. I’ll definitely keep you posted on any updates.

Jenni

Winter Update

I have been hearing a lot of people telling me how much reading my blog posts, along with updates, and inspiring others means to them. I decided it’s time for a well needed, overdue post. I noticed that every time I started one, for some reason it’s like I have writers block even though my life is filled with things to talk about. So finally here it goes…
 
First off, for unknown causes, about 4 months ago I injured the inside of my left knee. After an x-ray, there was no apparent bone fracture or break so the orthopedics thought it was a ligament sprain. They gave me a cortisone shot thinking that would help and then checked back with me regarding it. If the pain were to continue, I would’ve had to get an MRI to see if it was something more severe. I wasn’t able to bare weight on my leg because of it and it disrupted my standing schedule of 30 minutes every day. I have slowly worked my way back up to that amount of time and my pain is off-and-on depending on certain positions.

Next, I last wrote an update in June regarding my health. About 2 months ago I got another respiratory infection. This time I caught it early enough to where I just went on some antibiotics and didn’t end up in the hospital. The course was for 2 weeks and I’ve been pretty stable since it cleared up. It’s very difficult on my body and wears me down when I’m sick.

Unfortunately, almost a week before Thanksgiving my grandpa passed away. He was my mom’s dad. It wasn’t exactly sudden; he was living in a care facility for a while before that. We held a memorial service for him a couple of weeks ago and I had the privilege of sharing a Bible verse. I have a lot of memories of us, especially when I was younger. He will be forever missed in our hearts!

Last week the temperatures were hovering around 40°F. I took my dog Brody outside for a couple of short walk and roles. The first day, he was practically pulling my wheelchair like a sled dog! Since the weather’s been so nice out we didn’t have a "White Christmas" except for the little bits of snow already on the ground. Although the temperatures started dropping along with some snow, then rain a couple days ago.

Since my accident, we’ve been hosting Christmas every year. So we had family over Christmas Eve and Christmas day. It’s kind of nice having everyone come to us. I didn’t ask for anything in particular this year. I’m at that age where I find it more fun to give gifts than receive them. We also play the dice game as a family so it’s less pressure to buy a gift for everybody. I did receive

Hopefully I will be able to write more in the future. I realize now how much people want to hear about what I have to say or what I’m up to. Be sure to keep checking back to see more posts coming soon! Also, feel free to leave a comment and give me feedback.

Jenni

“Learn to enjoy every minute of your life. Be happy now. Don't wait for something outside of yourself to make you happy in the future. Think how really precious is the time you have to spend, whether it's at work or with your family. Every minute should be enjoyed and savored.”

-Earl Nightingale

Sharing My Story

I’m always flattered when other people ask to share my story. Whether it be my blog, another blog site, someone I just met, a person in a similar situation, a company, a classroom etc. I don’t mind it at all even if I have to tell it multiple times. I look at it as a way of inspiring others while gaining long-term friendships at the same time.

Since I started my own blog in 2008, I have received multiple comments and messages from around the world either sharing their story or telling me how I impacted them in some way. One example would be when I heard from a guy named Jia who lives in Singapore. Although our stories are different, he has the same injury level and also receives nursing care. Now we talk on occasion through Facebook.

A while back I received a comment from someone who lives in Scotland. He said "Hi there Jenni, I just wanted to say how amazing I think both you and your blog are. You seem like a great person and your blog has helped a lot since my mum was paralyzed 2 years ago, she's a C3 complete, so seeing someone with a similar injury is great for both of us. It hit my mum pretty hard getting injured and seeing other amazing women going through what she has really helped her. Thank you so much for writing it and sharing your story and life."

Aside from my own blog, I’ve also written blog posts for the Easystand blog, a company that supplied me with my first stander. I don’t use it anymore though now that my new wheelchair has the capability of standing itself. You can read multiple posts on their site although it’s currently undergoing construction.

Also, Pediatric Home Services asked me to write an article for their Thrive blog. PHS is a company that I order all of my supplies through for my medical equipment. I was excited to get a chance to write something for their blog, especially because they specialize with pediatric patients. I started with them when I was 16 years old after my accident and have continued into their care even though I’m an adult now. Click here in order to read the article.

As far as meeting others, one day I was taking my dog, Brody, for a walk. I ran into one of my neighbors, Rosie, who has 3 dogs and they all came barking towards him. It happened another time a couple days later so I stopped to talk and at that point I shared my story. Not soon after she remembered going to a silent auction for a girl who was just in an accident. Turns out it was me! We met about 5 years ago and since then we’ve become good friends and spend time together pretty much every week.

Another way that I spread my story throughout is by speaking. I’ve done multiple motivational speeches to different Schools and at events. All the way from kindergarten to high school kids along with coordinated organizations. In 2011, I won Ms. Wheelchair Minnesota which gave me a chance to also speak around the state.

I once received an email from a fireman. He told me that he remembered being at my accident and helping out. The way he heard more of my story is actually through his son who was in 3^rd grade at the time. Turns out he had come home from school one day telling his dad that someone in my situation came to his classroom and gave a speech. Somehow he figured out that it was me and we were able to get into contact. It was great to know that I made a difference in this little boy’s life along with a longtime memory of this fireman.

I’m sure there are many more stories like the ones I have shared that have happened and are going to in the future. I’ve always thought about writing a book 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.

Jenni

Summer Update

It’s the beginning of summer already and I can definitely feel it in the air. The temperatures outside have been hot with lots of humidity. With the highs being above 90°F, it’s difficult to get out, especially when the heat index is over 100°F. There also were a couple of days where there have been heat advisories or warnings to where they don’t recommend you get out of the house.

On those days I don’t go outside, although I do try to get out every day to take Brody for a walk. I mostly stick to the shade, just going down the street and back. I’m usually only outside for no more than 15-30 minutes, which is plenty of time for him to get some exercise and also me some fresh air. It’s better when there’s a little breeze to help cool things down. When it’s cooler out I go for longer walks.

Other than getting outside, I have been trying to stay healthy. Last month I ended up in the hospital for 5 days for pneumonia again. I’m finding it more difficult to stay away from that place of being sick all the time, especially over the last couple years. Now that I’m feeling better, it’s harder for me to get out places knowing that’s what may cause me to become sick.

As of other things, following up with the edema that I was talking about last fall, I’ve been seeing more doctors about it. They narrowed it down to me having low albumin (loss of protein) although I haven’t gotten any answers as to how to change it. I’m going to see a nutritionist in a couple of weeks. One doctor suggested protein powder to see if that helps. Even though I do eat foods with protein, somewhere it’s getting lost.

Another thing she that I have been working on still is standing in my wheelchair. I have been trying to do it every day for at least 30 minutes. That all depends on what my blood pressure is and how I’m feeling. I take my blood pressure about every 5-10 minutes to make sure it’s not dropping. I usually just watch TV while standing. It’s difficult to go on my computer because I need to do as little talking as possible so it doesn’t drop.

For now, I’m going to continue to go outside when it’s nice. My goal is to avoid sickness and steer clear of the hospital. I’m also going to try to figure the cause of my edema. Hopefully it’s not something any more serious.

Jenni

Strength from Within

Accepting change is one of the most difficult things to do. As far as myself since becoming a vent dependent quadriplegic, I still struggle with not being able to manage my own cares and have control of my body. I have nurses 24/7, along with constant interruption and lack of independence. Because this is part of how things are, my life’s goal is to try to succeed in different ways.

Learning to live differently from how I used to has been a challenge, but not impossible. Throughout the years I’ve realized that it’s not just about being able to survive, it’s about thriving as well. I know it’s hard for many people going through tough situations to believe that despite the struggles that go on there are positives as well.

Either from others in similar situations or from people around, I’ve learned that you can’t always manage what happens in life. Despite it you can decide what you do with your life afterwards. Incredible change occurs when you decide to take control of the power you do have instead of craving control over what you don’t. In past experiences, just going through the motions isn’t always enough. Sometimes it takes a little strength from within to boost up your life.
Jenni

"This is the time I will be stronger, braver, kinder and unstoppable. This year I will be fierce. With the new day comes new strength and new thoughts… Accept what is, let go of what was, and have faith in what will be."

A Trip to the ICU

I just wanted to give everyone an update on my health. Last week on Wednesday night, I had symptoms of hypotension (low blood pressure) and high rate also known as tachycardia. This is opposite of how my body is during the night while lying in bed. Thursday morning I decided to go into the ER to see what was wrong. They had to bring me by ambulance because I couldn't sit up in my wheelchair due to the low blood pressure. In order to use the stretcher, they had to come down the side of my house to bring me out.

Since it was still covered with snow and thick ice, it couldn’t be hand shovel. When the cops got here first, they called the fire department to shovel it out. In the meantime, a nonemergency ambulance showed up and another EMS team to help bring me out. Once I was finally in the vehicle they hooked me up to oxygen and I was able to bring my home ventilator with me which was nice. I forgot how bumpy those ambulance rides are!

When I got there, they did a chest x-ray and an EKG of my heart. Based off the results I was admitted to the ICU. I stayed overnight on IV antibiotics while they monitored me. Friday morning I had a CT scan done and a small infection was found in my lungs. Then they did a bronchus copy of my lungs which will indicate what strain of bacteria it is.

I was discharged Friday evening and was feeling much better. Saturday during the day was the same although during the afternoon and throughout the night I started needing oxygen for support along with multiple suctioning. However things turned around Sunday afternoon and right now I'm only using oxygen when needed and feeling much better! Because the results weren’t back get yet, they prescribed me with a broad spectrum oral antibiotic so hopefully I continue down this path without intervention.

Please keep me in your thoughts and prayers as I still have some healing to do. Thanks!

Jenni

Historic Snowstorm

This is my aunt snow blowing our sidewalk in the backyard!

This weekend we had the worst snow storm in history here in Minnesota. I believe we got at least 15 inches of snow in my area although I know of other parts of the state that got a lot more, and to think it’s the middle of April! We’ve had snow in April before but nothing like this which I have posted about before. They are calling it a "Historic Event" because it was that epic.

I’m lucky to have such dedicated nurses working for me. My night nurse worked Friday night and stayed over Saturday, worked Saturday night, stayed over Sunday, worked Sunday night, and then same thing with Monday. She was able to go home Tuesday since some of the snow was cleared away and it had stopped snowing. Also, the nurse that worked during the day had to leave her car here and had someone pick her up to bring her home. Same thing with Sunday!

I haven’t been able to go outside for a walk/roll with Brody because of it. I think he is having seasonal depression right now because of the weather. He won't even get off coach when I call him which is unusual. We're supposed to get more snow in the middle of the week although it’s starting to warm up and melt so hopefully soon I will be able to. I'm definitely looking forward to spring to actually arrive.

Jenni

Another Podcast!

"In Episode 2, we tackle one of the hardest things about being paralyzed - going home after your injury. The shock, the loss of friends, figuring out how to move on, this is what makes us the strong survivors that we are. Tiffiny speaks with four people with quadriplegia who share their story. Listen in as each tells their story."

A couple of weeks ago, Tiffany interviewed me in her podcast for spinalcord.com. She is also a quadriplegic who writes for other blogs along with the New Mobility magazine. She is very social in the disability community and even has her own blog BeautyAbility.com. I did a similar podcast for her blog in 2012 and the link is on one of my previous blog post.

Tiffany asked me questions about my injury and also my life as a quad post accident. The podcast also features interviews with three other quadriplegics all with different stories. My interview is the second one shared. Click on the link below to listen and let me know what you think!

https://www.spinalcord.com/sci-life-uncovered-2

Jenni

Meeting New People

When I first meet people I'm not shy at all. I like to ask questions and answer them as well. One of the things that interests me the most is actually meeting new people and getting to know them. I am a very outgoing person whose not afraid to try new things. Although, when people meet me for the first time sometimes they may be curious, intrigued, amazed or even fearful.

I often explain to them my situation and what happened to make them more comfortable, even if they don't ask. I try to embrace new chances at life. It seems that sometimes people don't know how to act or react to someone like me. This makes me even more want to get out and show others who I am and what I'm capable of doing, despite my disability.

It can be hard to meet new people in my situation. That's one of the reasons why I like doing motivational speaking to children, adults and at events. To show others that despite my disability I have abilities as well. You never know, a simple hello could lead to a million things. I believe there's always a reason why you meet people. Either you need them to change your life or your the one that will change theirs.

Jenni

"You must be the change you wish to see in the world"
- Gandhi