Postop Update

Just wanted to give a quick update. My surgery on Monday was a success. I only had to spend one night in the hospital and was able to go home yesterday around 3 PM. Since I don’t have complete feeling, I am not sure about exact feeling of pain. Although I’m able to go off on how my body reacts and the little feeling I do have.

I can tell my back is sore and have had more muscle spasms which for me can be an indication of pain. I’ve been taking Tylenol at home, but they did give me oxycodone as well. I’m not one for taking narcotics unless I really need to, so I haven’t yet. For now, I am going to lay low and just relax for the next few days or so.

Jenni

Upcoming Surgery

During my last update, I shared that I’m going to be having surgery to replace my baclofen pump on Monday, January 27. The battery lasts about 5 years and then it needs to be switched out. Although the last it was changed was in 2013, 7 years ago. This will be my 4^th baclofen pump. I’m hoping there aren’t any complications, and then I’ll only have to stay one night in the hospital.

My physical with my doctor last month all checked out to be normal. I had an appointment yesterday to do an x-ray of my baclofen pump. They want to be sure they know where everything is placed before doing surgery. It was a pain to get the x-ray done though. I went to a clinic instead of the hospital so instead of a ceiling lift they just had a hoyer lift to get me onto the x-ray table.
 

There were only two technicians helping along with my nurse. They had to call a third person in order to transfer me completely there and back. It probably took twice as long as it should have. I’m glad that my nurse was at least there to help. My tubes for my wheelchair vent are only 6 feet long and didn’t reach while I was transferring so she had to take me off my vent and bag me.
 

Hopefully I won’t have to go through that ordeal anytime soon. I’ll update everyone after my surgery to let you know how it went.

Jenni

Painting of a Painting

 

I recently came across this photo of a painting of a girl in a wheelchair painting with her mouth. She’s painting a picture of herself flying free from her wheelchair. I found it very creative along with inspiring as well. It spoke volume to me as I feel free while painting with my mouth!

Jenni

My Blog: Highlighting Top Posts

Within this day and age, it seems like virtually every company, artist or individual has a blog. As for me blogging is a way to provide information to others along with creating a stronghold on specific topics related to myself and spinal cord injuries. In a sense, my blog is a good representation of what I stand for making it unique to me. My goal is to share my story, giving others a glimpse into the life of a quadriplegic.

There are many ways in which I develop my blog posts and ideas. Sometimes I just type into Google "blog post ideas" and I get a variety of lists. Other times it’s from people’s comments, questions or thoughts. I encourage people to ask questions and explore their thoughts with me. By covering every angle of a question, I can usually create a post. Occasionally, I will do an update post to let people know how I’m doing or what I’ve been up to.

Over the years, my blogging career has changed. I believe I’ve gotten better at writing because of it. Also, I have found a niche as to what I believe my readers want to hear from me. By doing this I’ve perfected my style and created specific topics to showcase all sides. I don’t copy other bloggers alike in this case being my own authentic self.

I’ve learned that building a successful blog takes time. Some of my top blog posts are when I share updates about myself and when I talk about sharing my story with others. Below are links to some of the top posts created and visited:

Sharing My Story

Strength from Within

Getting Taller

 

Trach 101

 

Speaking after My Accident

My Body: Spasms and Pain

True Friendships

My Big Day

Ms. Wheelchair America Contest 2012

Obstacles in the Community: Sidewalk Ramps

Spasticity & Muscle Spasms

Regulating Body Temperature

Overcoming Challenges

Neck Brace

My Ventilator

Why I Get Botox

Life As a Quad I: The Basics

Having Full-Time Caregivers

I’ve talked in the past about needing 24/7 nurses attending to my every need. They work 12 hour shifts from 7 AM to 7 PM and 7 PM to 7 AM. I also need PCAs to help aid the nurses with daily tasks. I was having trouble getting PCA help with my last agency, so I switched to a new one a few years ago. I used to just have them work from 7 AM to 11 AM. Since switching, I now have coverage from 7 AM to 12 PM and 6 PM to 10 PM.

As someone with a disability, I look for certain traits in my caregivers. Since they’re here often I tend to gravitate towards ones that fit my personality. Spending a full day or night with a person you don’t have anything in common with or isn’t particular to your likings is not always pleasant. Although if I have open shifts, I may need to settle for anyone who can fill the spot.

When starting with a new nurse, I first like to do a meet and greet with them to see if they are good match for me. If they are, they get 2 or 3 training shifts with one of my nurses on staff. Depending on how well they do, depends on how many days they need to train. After a meet and greet with a new PCA, they usually only do one training shift.

There are positives and negatives to having 24/7 nursing. On a positive note, I receive the care I need in order to thrive as an individual. Because I am paralyzed from the neck down and on a ventilator, they are my hands. They are there to help me do the things I cannot do by myself.

It can be difficult to maintain a "normal" day to day life when I'm constantly surrounded by other people. They always have to be within earshot in case something happens. Although throughout my house I have an intercom system, so they don’t have to be sitting right next to me. I also use a baby monitor in the other room so I can be as independent as possible. An interesting fact is that my dog, Brody comes to me when my vent alarm goes off. Sometimes he goes to get nurses if they aren’t around me.

Even though having people around all the time may be difficult, I do tend to form a relationship with them. Something that’s very hard on me is losing staff whether it be to a hospital, another client or pregnancy. I know that as nurses, they aren't supposed to be "friends" with their clients but it’s hard to work so close to someone and not form any sort of relationship. I’m sure others with caregivers can relate I situation. The reason I brought up losing nurses is because I recently lost two.

After someone leaves, the main goal for me is to get someone to replace them. Usually they give a two-week notice. Sometimes it takes a while to find someone and sometimes it happens very quickly; it all depends on the interview process and training. While it is difficult on me to lose staff, it's also hard on them to leave as well.

Jenni

Curing Paralysis

Those of us with spinal cord injuries all wish and hope that there was a cure for paralysis. We are now learning that there are ways around an actual cure. By using an electronic device, the people in this video are learning to walk again.

Jenni

Faith and Courage in Life

In life there are people that will hurt us and cause us pain,
but we must learn to forgive and forget and not hold grudges.

In life there are mistakes we will make,
but we must learn from our wrongs and grow from them.

In life there are regrets we will have to live with,
but we must learn to leave the past behind and realize it is something we can't change.

In life there are people we will loose forever and can't have back,
but we must learn to let go and move on.

In life there are going to be obstacles that will cause interference,
but we must learn to overcome these challenges and grow stronger.

In life there are fears that will hold us back from what we want,
but we must learn to fight them with the courage from within.

God holds our lives in his hands. He holds the key to our future.
Only he knows our fate.

He sees everything and knows everything.
Everything in life really does happen for a reason: "God's Reason" 
 
-Anonymous
 

The S-Pod

My wheelchair that I have now (received in August 2016) has many features on it. I have blogged about how it has the capability to stand along with elevate, tilt and recline. Although since I’ve been having problems with my knees, I haven’t been able to stand. Not standing has caused some uncomfortableness within the rest of my body and I’ve still been retaining fluid.
 



Although as new technology arrives, I’m reminded of how many changes in society we go through. I received an email about "Segway’s new self-balancing vehicle". It doesn’t require you to stand up like their self-standing one. "Dubbed the S-Pod, the new egg-shaped two-wheeler from Segway-Ninebot is meant to let people sit while they effortlessly cruise around campuses, theme parks, airports, and maybe even cities."

It also has a 24 mile an hour mile an hour speed limit. I thought this was a great new, invention especially because it is shaped like a wheelchair. It seems like someone who needs to sit all the time could also use it.

Jenni

Knee Updates

A few weeks ago, I mentioned the pressure sore under my left knee. After seeing the wound Doctor, she recommended cleaning it 3 days a week with normal saline. Then putting an ointment called medihoney on it followed by a dressing called mepilex. The medihoney has been shown to effectively promote autolytic debridement and wound healing in chronic and acute wounds.

After doing it for a couple of weeks, the sore reduced in size and I saw her for a follow-up appointment last week. She told me that it was looking much better and healing better-than-expected. She recommended to keep cleaning it and putting the dressing on but that I didn’t need to use the ointment anymore. I’m going to see her one more time next week.

Last year in July, I reported that I injured my left knee 3 months prior. Originally my orthopedic Doctor thought that I had a torn MCL, although since he couldn’t find anything wrong on the MRI, he then came up with a diagnosis of a bruised bone. For me, this made it even more difficult because bone bruises take a lot longer to heal and nothing surgically can be done to fix it. Despite the prognosis, it’s slowly getting better with time.

Another negative to this situation is that I still haven’t been able to stand; one thing that helps shift the fluid in my body. Even though it’s good for my body, I wouldn’t want to reinjure my knee. For now, it’s best that I stay off it until it fully heals even though I’m not sure when or how long that will take.

Jenni

Mouth Painting

My niece, Avery is very kind and enjoys spending time with me. She likes to play with her American girl doll. My aunt, Sandy got her a wheelchair for her doll a few months ago. For Christmas I got her a Barbie in a wheelchair. I had no idea there are so many toys these days for all types of situations. I’m glad that there are options like this out there. That way people and children can have a better perspective about those with disabilities throughout life.

One thing she likes to do is create houses out of boxes. She tapes them together and then paints them. About a week ago she was over creating one of her houses. My mom happened to glance over and saw her painting her box with her mouth. She asked how she knew how to do that, and she said, "from Jenni!" Of course, my mom knew she had to get a picture to capture the moment.

I thought it was very creative and touching at the same time. That’s when I knew it had to be shared with everyone. I know from experience by speaking to children to befriend those with disabilities and treat them the way they would want to be treated. Growing up around me has taught these exact things.

Jenni

Happy New Year!

 

Throughout my journey so far, I’ve learned that life’s about change. Sometimes it’s painful, sometimes it’s beautiful, but most of the time it’s both. Your present circumstances don’t determine where you can go. They merely determine where you start. Allow yourself to set a new goal or dream; you are never too old. Let the new year 2020 be as clear as 20/20 vision: 100%.

Jenni