Monday, August 21, 2017

Relationships in My Life

According to Merriam-Webster dictionary the definition of a relationship is: "The way in which two or more people or things are connected."

Although there are many people that come and go throughout one’s life, there are some that connect on a deeper level and others that just pass through. In my life I’m fortunate to have many relationships including friends, significant others, family, caregivers, even pets etc. It feels good to have that one person or group you can count on to talk to or be there for you no matter what.

I was once asked if it’s tough to make new friends now that I’m in a wheelchair and a quadriplegic. I think it is difficult sometimes, but it isn't impossible. It seems hard for others to approach someone with a disability because people are afraid of the unknown. I guess I would say that it’s harder to find new friends who are able-bodied versus disabled because I have more in common with someone who has a disability.

I have made many new friends since my accident including past nurses. I also still keep in touch and hang out with friends from before, even ones I’ve had since grade school! It’s great when there are those that are accepting of my situation, especially when it’s someone I meet post accident. That’s why I try to socialize and meet as many people as possible. I want others to know that I’m still me, despite my disability.

Another type of relationship is on a romantic level. I’ve been asked many times about what dating is like for someone in my situation. It seems like a complicated question, but some of the answers aren't any different than from someone who is able bodied. Before meeting my boyfriend Ryan of almost 3 years, I still faced the same obstacles like finding someone who was my type and liked me for who I am. I had ups and downs, faced rejection just like others. I also had to learn that this was okay and I don’t have to settle with just anybody to make me happy.

Ryan and I met on an online dating website called Plenty of Fish. Although he’s been through disability-related situations throughout his life, he understands and accepts me for who I am despite my disability. Ryan is an exceptional guy, and one who has proven his love for me through his actions, affection, care, and trust. He currently works as a CNA helping other people with disabilities in their daily living.

My mom has been there with me through everything. She is always there for me when I need her and takes good care of me. It's hard when she goes away, but I know she needs a break too. I don't know what I would do without her by my side. Two years ago, she was diagnosed with colon cancer and as a result underwent chemo and radiation. That same year she had 2 surgeries. Earlier this year (1 ½ years later) she had to have another surgery to repair damage caused by the chemo and radiation. In November, she’ll have one final surgery.

There are other family members close to me include my dad, sister, and niece. I usually see my dad every other weekend or when he gets a chance to come over. We like to hang out and play games. Sometimes he brings his dog Bailey over. I also have my sister, Kristen and niece Avery who is 4 years old. They live in an apartment nearby, and stop by a couple times a week. It’s nice when I get a chance to see them and hang out. My niece, Avery, likes to be involved with whatever she can, especially helping out with my cares.

Another relationship in my life that I am faced with on a daily basis is having a nurse by my side 24/7. Depending on the person working for me also depends on what type of relationship we have with each other. Some I am closer to than others, especially if they’ve been working for me for a longer period of time. Most of the time the nurse and I have a relationship where we understand each other and have bonded.

It can also get difficult at times having someone by my side all the time. I may get irritated or annoyed with the nurses, but that's only because 12 hours is a long time to spend with one person. Sometimes I just want to be alone with no one in the house, but I know that will never be possible as long as I'm on a ventilator and have a trach. If something were to happen, for example my tubes popping off, they need to be there for me to put them back on so I could breathe. I just have to remember that they are my hands and there to help me.

As far as pet relationships I have my dog Brody who is like my companion dog. Even though he isn’t certified, he still acts like one. His breed is a Chinese Crested Powder Puff and they’re known to be very loyal to their owners. I think that is why he is so in tune to my needs and doesn’t require a lot of direct training, especially when it comes to obedience to me.

Regardless of relationships that may come and go in my life, the one relationship that always remains and never goes away is my relationship with myself. I know if I stay true to who I am and never give up despite what happens, I will persevere and overcome any challenges or obstacles in my way. That being said, my main goal is to live life to its fullest and remain positive for myself and others around me.


Jenni

Sunday, August 13, 2017

Getting Taller



 


Tuesday, August 8 a company called Handi Medical came out and finally delivered me my new wheelchair. It took over 4 hours to transfer everything over from my old wheelchair and get everything programmed. I've been waiting for a long time for this. I first started this process in December 2015. Like I stated before, it has the ability to stand, so I won't have to transfer into my Easystand stander. It also tilts, reclines, and elevates up and down to meet different levels of need.

Standing helps prevent osteoporosis and also strengthens bones and muscles. Being paralyzed from the neck down is difficult, especially when it causes me to be uncomfortable in my own body. It's not easy to sit in one position for a lengthily amount of time, so I'm constantly needing range of motion or some sort of movement. That's where the freedom of being able to stand on a regular basis will be nice comes in while utilizing my new wheelchair, which is one of the things recommended for spinal cord injuries.

Getting started is always the hard part. Since I hadn’t stood in about eight months (last time I trialed the wheelchair), my body wasn’t used to it. I have hypotensive episodes, where my blood pressure drops when I change positions from laying to sitting. It's even worse when I go from sitting to standing. Most times I have to go really slow and gradual into a standing position. I’m on 2 separate blood-pressure medications to help elevate it.

Although, since receiving it my blood pressure has improved while repositioning into standing and hopefully soon I will be able to go straight up without having any issues. I have been standing at least one time a day, mostly for 30 minutes at a time. In fact, I’m standing right now while writing this blog post! The picture posted above is of me standing for the second time since receiving my new chair. I'm 5'8", but it is up off the ground so I stand taller than everyone who is helping me.


Jenni

Friday, July 28, 2017

Overdue Update

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

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

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

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

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

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

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

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

Jenni

Saturday, May 20, 2017

Back to Speaking


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

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

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

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

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

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

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

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

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

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

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

Jenni

Friday, March 3, 2017

Posts to Read

Although I only created 2 blog posts in 2015 on my blog site, I was writing for the Easystand Blog. I have a stander by them in which I've used. Taken from their website this quote shares what their blog is about:

"Our goal at the EasyStand Blog is to communicate to you what we stand for, whether it is about standing, disability, or just topics that we care about. We want to encourage interaction with our many circles of contacts รข€“ suppliers, clinicians, consumers, and their families. As well as our international distributors, independent reps, and even vendors and employees."

Altogether I wrote 14 posts in which were featured. Some of them are re-posts from my own blog. Here are the links:

Feeling and Movement after a Spinal Cord Injury Part II: Movement

Finding the Strength to Get Out Of Bed Each Day

Maximizing Independence Through Technology

Dating After a Spinal Cord Injury

Sharing My SCI Story

Regulating Body Temperature with an SCI

Accessible Living After a Spinal Cord Injury

A Moment Among Many Feelings

Private Thoughts in a Not so Alone World

Personal Ad

Anniversary Day

Showcasing "Abilities" While Having a Disability

Shaking Hands

My Journey to the Ms. Wheelchair Minnesota 2016 Pageant

In addition to these, I've written other posts on their blog as well in the past. Unfortunately, due to my health in 2016, I didn't have the strength to write any more blog post on the Easystand blog or my own. Since I started feeling better, I felt the need to write posts on my own blog; it's been an easier way to update everyone.

Jenni

Sunday, February 26, 2017

In the Clear

After being diagnosed with pneumonia a few weeks ago, I'm finally in the clear. There were a few ups and downs where it got better than worse, but luckily they removed the PICC line last week. I'm still on extra antibiotic nebulizers to make sure it stays away. The good news is I'm feeling much better. The IV antibiotic was 3 times a day so I was unable to go many places because of having to give it during the middle of the afternoon.

Due to my lack of updating, I never informed about receiving a new wheelchair back in December 2015. It has the ability to stand, so I won't have to transfer into my Easystand stander. Although because of being sick and hospitalized throughout 2016, I've been unable to utilize it. In between hospitalizations and then again towards the end of last year, I was doing therapy at Gillette using my stander in order to tolerate standing again.

I had to stop for about a month due to this last illness, but will be starting up again this week. I'm determined to start using my new wheelchair as soon as they get it all adjusted. Another thing that's been holding me back from getting out a lot is pain. Some is caused by positioning and other is from the underlying condition of having a spinal cord injury. No amount of medication helps to relieve it either which can be frustrating.

Being paralyzed from the neck down is difficult, especially when it causes me to be uncomfortable in my own body. It's not easy to sit in one position for a lengthily amount of time, so I'm constantly needing range of motion or some sort of movement. That's where the freedom of being able to stand will be nice comes in once I'm able to utilize my new wheelchair.

Despite being sick I was so positive that this year would bring me luck. Too bad respiratory infections tend to get the better of me. I'm hoping to steer clear for now and be able to enjoy these days without sickness. The one benefit is that the weather here in Minnesota has been extremely nice and I have been able to get outside to take Brody for a walk/roll. We both enjoy a little bit of sunshine!
 


This picture was from November 2016. The trees are bare now and there is a little bit of snow on the ground. I still have to bundle up by wearing warmer clothes, hat, scarf and a blanket!

Jenni

Tuesday, February 7, 2017

Sick with Hope

I thought that after everything I went through last year I'd be in the clear as far as sickness goes this year. Well, I was wrong. Unfortunately I found out last week that I have pneumonia again. I started suctioning up green and red secretions, similar to early December when I was hospitalized along with the other times last year in which I was sick. Luckily I caught it early enough that I didn't land in the hospital.

The bad part is that it's resistant to many of the medications and nebulizers that I usually take to get rid of it. Monday I had to have a PICC line put in place to administer medications at home. I had to have this done last summer as well so at least I’m familiar with it. I feel like I’m just starting the whole process over again.

Even though I’m just updating everyone, it feels like most of my posts have something to do with an illness. Due to the fact that it's winter, I’ve been having infections and it’s harder for me to get outside, I try to think of the best possible ways to keep busy aside from just watching TV. One thing that I really enjoy doing is playing games. I like all types including card, board and strategy games.

Now hopefully things start clearing up and I stay in the uphill as far as infections go. My goal is to continue to remain positive and allow myself to recover throughout these times of struggle. Please keep me in your thoughts as I continue my journey. Thank you for your support.

Jenni

Monday, January 16, 2017

Remaining Positive

After writing my last blog post and sharing it with others, I wasn’t thinking about how many people didn’t realize how tough I had it last year. My main goal was to share my status along with how I was feeling throughout the times I struggled. Even though my body was tackling and sometimes my mind too, I tried to remain positive. If I didn't I don't think I would've been able to make it through.

Something that I've always tried to encourage others including myself is to focus on the things that have brought us down most and use them as a reminder that there are better situations beyond what we may or have experienced. Throughout my existence I've experienced pain, tragedy, grief, loss of independence etc. but in other ways have gained a bright outlook on life along with a belief system that change can occur.

In my own struggle, my life changed in an instant that has forever impacted my future. I’m constantly reminded of the understanding why I chose to live instead of going down a darker road. Despite what I’ve been through and what took place, I’m still remaining hopeful because that’s what got me through. When I was in the hospital I would try to think of ways in which I could turn my situation into something less negative to get me through.

I realize that many people see my position as challenging or hard and some even feel sorry for me. However, I’m grateful where I’m at knowing very well that my situation could be worse. By working through the challenges and overcoming each obstacle that comes my way is another victory towards a better quality of life.  If I can keep that momentum going and those thoughts in my mind, I know for fact I can accomplish anything. I’m living every day like it’s my last and cherishing what I have.

There are many people in worse off situations than mine struggling with their lives. I accept happiness because I want my being to be worth something; I want meaning and purpose in my life. I need to be able to exist with what happened to me and not die with regret, unforgiving, frustration, bitterness, or anger.

A lot of people ask me "how do you do it?" or "how do you stay so positive after what happened?" The truth of the matter is that sometimes I don't know how I'm doing it or how I am so positive most of the time. One of the ways that keeps me going is being able to help other people along the way. Some have told me that I’m an inspiration to them. All I have to say is that I’m human, stuff happens and I’m just trying to live the best that I know how.
 
I encourage those of you reading this to take a step back and acknowledge the challenges, tough times, obstacles, or other occurrences in your life that you have or are facing. Think about the ways you dealt or coped to get through. If you are experiencing a situation now in which you are searching for ways to overcome think hopefulness, knowing that there are others out there for support and help.
 
Jenni

Friday, December 30, 2016

This Year

Dealing with infections, being sick, pain etc. in my situation is very frustrating and difficult. It brings a lot of stress along with taking up a lot of my time. Not to mention my body doesn’t handle it very well. I get a lot of spasms and my muscles get tight making it hard to do range of motion and causes pain. It seems that one thing affects another and another and so on.

This year has taken a toll on my body physically and emotionally. On January 17, I was hospitalized for pneumonia and discharged 3 months later on March 2. They realized I had an infection in my vertebrate that turned into an abscess. They had to drain it and put me on antibiotics. I also had a hole in my esophagus but they weren't sure exactly what it was from. They had to do surgery on it alongside putting drains in for the pneumonia and infection.

Since then, I’ve been in and out of the hospital 3 times due to respiratory infections; one in April for 3 days and two in June. There are many causes for respiratory infections and it’s even harder for someone on a ventilator to avoid and/or get rid of them with simple antibiotics. This is what caused many of my hospitalizations.

My most resent and 5th hospitalization was from December 9-12. At first, we thought it was due to a respiratory infection. I was on multiple medications and nebulizers prior to being admitted but nothing seemed to help. One day before, instead of green secretions I started suctioning up bright red blood and clots. This was clearly not the infection I thought it was.

During my admission, they were able to determine that I no longer had an infection and the blood was not coming from any sort of abrasion in my lungs that they could see. Good and bad news. In the end, the ruling was that I had a blood vessel in my lower right lobe that burst/broke open which caused the bleeding. Either it was going to heal by itself or they would have to go in and cauterize it. Luckily, they sent me home and within a couple of days the bleeding stopped.

In the beginning of the year when I got sick, I wrote this when my body took over my mind: “I’m sick of being sick. Not only is my situation frustrating, difficult, stressful, and painful it’s emotionally and physically exhausting. I’m surrounded by things in which I cannot control and that includes my own body. I am paralyzed from the neck down and I’m struggling while dealing with the constant downhill battle I’m being taken on.”

What I wrote simply explains exactly what I feel like sometimes, especially when I’m unable to control the things around me. That includes my own body and health. I’m sure that others in my situation may have similar feelings. The past couple of years have been like nothing other for me as far as sickness goes. Aside from my initial six-month stay in the hospital post accident, I’ve spent a lot of time recovering my body and restoring my health.

Unfortunately my lungs are not as strong as they used to be. I’m not able to handle being outside and going as many places like I wish I could. It doesn’t help being on a ventilator 24/7 in which I’m prone to chronic infections. I have to be very careful about what environment I’m in and not expose myself to anything that may harm me. This also means staying indoors during the cold Minnesota whether, which doesn’t help satisfy my need to break free from my house once in a while.

I wish I could’ve been able to blog and update more often but with everything that’s gone on, this post alone took the last couple months to write! That’s a long time for me considering how much I love to write and the dedication I have for updating everyone. I’m hoping for a strong recovery, making sure that I stay well in order to avoid sickness and hospitalizations. For now, I will continue to do as much as possible and blog within my capabilities.

Also, my blog looks a little different than it did before. I’ve been unable to design it how I like so I went with as basic as possible even though there are some things that look off.
 
Jenni

Saturday, May 30, 2015

Surgery on My Neck: Post-Op

I ended my last blog post talking about the pain in my neck along with my surgery options. Well, let’s just say things didn’t go quite as planned. As I wrote before, I opted for the larger surgery because of the long-term benefits and decided not to go ahead with the small surgery. Surgery was on May 6 although my stay in the hospital was more than the initial intended time of 3 to 5 days. I got home from the hospital May 13 and have been in the recovery mode. I spent a little over a week in the hospital due to a few setbacks during the procedure. 
 
The two surgeons that were working on me were an orthopedic surgeon and neurosurgeon, I couldn’t have asked for a better team. The problem came across when they opened me up and saw that the bone spur was bigger than they expected. The team was also worried about spinal fluid leakage along with baclofen leaking because that’s right around the area that the catheter sits for my baclofen pump. After removing the spur, they put the "plug" in place as planned and then instead of doing the larger surgery they did the smaller one (both surgeries explained in previous post). I spent 4 hours in surgery as opposed to the 12 originally set aside.

This is what the bone spur looked like from a CT scan. It's the white pointed spot between C4-C5 (towards the middle of the picture) that was facing towards my spinal cord. Since they've removed it, I've had significant less spasms and pain relief even though things didn't go as planned.
 

The surgery for the actual fusion (originally planned in the first one) from C4-T3 has yet to be rescheduled. I’m still recovering from this one, especially only being 3 ½ weeks postop. I have to wear a neck brace 24/7 hopefully only until my postop appointment on June 23. I missed my first appointment on May 18 because I wasn’t able to sit in my wheelchair for more than a couple hours. I’m still working towards being in my wheelchair for the length of time I used to (about 10-12 hours) but it’s a slow process. My body can only handle so long before I have to get back into bed. Right now though I am up to about 6 and I’m slowly increasing every day.

This is the view from my patio that was recently built. The picture also shows the neck brace I have to wear.

Recovery and rehab time/process afterwards is always unknown in these situations but I’m hoping it won’t be too much longer before I’m back to normal. I've been trying to get outside when it's nice even if it's just sitting on my patio. Although, my dog Brody sure loves his walks so I've been taking it slow rolling down the streets with him! Like I stated above I’m not sure when I’m going to have the actual fusion; I guess I’ll have to decide that at my postop. I appreciate all of your thoughts, prayers, and concerns. Please don’t hesitate to ask questions and I hope to fill in more details as they come along.

Jenni