Winter Update

I’m glad to report that I haven’t been sick since April this year. I had to minimize my activity level a little bit in order to maintain my health. It’s too bad that it came to that, but I feel staying healthy trumps all in my life right now.

It hasn’t stopped me from taking Brody outside for walks. My body can usually handle the weather if it’s 30°F or above; I’ve gone out when it’s been colder than that. I’ve realized that the feeling of temperatures is different depending on where you live. As far as Minnesota, we’re used to 4 seasons, winter being one of them and bearing the cold. Someone in a state who’s used to warmer weather may think that’s insanely frigid.

Although yesterday it was kind of drizzling rain all day and today it’s snowing with wind. My backyard does look pretty with the snow though! I think it’s been about a month since we’ve had some snow here which is unusual for winter weather; same thing with the temperatures being warmer.

Tomorrow I have a physical with my primary doctor. The reason is because I’m having surgery on January 27 to replace my baclofen pump. There’s nothing wrong with the pump itself. The battery in them only lasts about 5 years, and then it needs to be switched out when it runs low. Last time it was checked a couple weeks ago there was still about 6 months left but they like to change it out sooner just in case. It's a good thing the scanner can detect how much battery life is left, otherwise it could turn into an emergency situation.

This’ll be my 4^th baclofen pump. I had my first one inserted in 2003 and the 2^nd in 2008. They changed it last in 2013. Surgery itself won’t take very long and if all goes well, I’ll only be in the hospital one night. Hopefully nothing major goes wrong otherwise I’ll have to stay longer.

Jenni

Merry Christmas

Merry Christmas Eve everyone! Every year since my accident we started hosting every holiday at our house. It’s just easier because of accessibility; I can’t get into any of my family members houses. We have some family coming tonight for Christmas Eve and some tomorrow for Christmas day in which we will celebrate and open gifts. My mom, sister, niece Avery and I will exchange gifts in the morning.

I didn’t ask for anything specific this year. I find it more fun to give gifts than receive them. Also, instead of buying a bunch of gifts for everybody, we each purchased one $15 gift. In the past, we’ve played the dice game but last time it took forever. This year we’re just going to put every gift in a pile and each person can pick something. After we open, we will have one chance to exchange what we got with someone else. I hope that will make it go much quicker.

I hope you find peace and joy in this holiday season!

Jenni

Dealing with Sores

It’s important for people who are unable to move themselves to be aware of pressures sores. They occur from too much pressure on one spot of the body for a long period of time. They start out as just a red mark and can progress into a nasty open wound that can be difficult to get rid of. They can be very painful, and if infected may cause death. Many people with physical disabilities get them on their back and butt from sitting and laying too long without changing positions. One can also get pressure sores from laying on wrinkles or from their orthotic braces being too tight or not fitting correctly.

Something that helps prevent them is to reposition frequently. During the day in my wheelchair, my nurse will change my position using a pillow. I alternate from having a pillow to not having one, in order to relieve pressure on my back. My nurse will also stretch my arms and legs a couple times so that they are not in the same position for too long. My wheelchair also reclines and tilts; that way I’m able to change the position of my body.

In bed, I also use pillows to reposition and relieve pressure on certain parts of my body. I start off by turning to my right side before falling asleep. During the night when I am sleeping, my nurse comes in and turns me three hours later to my back. After about an hour, they turn me on my left side for three more hours. It's a lot of movement but well needed.

I am in bed more than I am in my chair, and because of that I have an air mattress as another precaution to ensure that I don't get bed sores. The mattress is inflated with air by a pump that hangs on the end of my bed. The air alternates throughout the mattress to change pressure from one spot to the other. It is extremely comfortable and essential for preventing bedsores. My wheelchair seat that I sit is called a ROHO cushion and it is also filled with air for the same reason.

Over the years, my skin has been very healthy, and I haven’t had a pressure sore since right after my accident when I got one on my right shoulder blade from my Halo vest. Other than that, I’ve been very lucky. Although lately I’ve been dealing with a small but deep pressure ulcer that developed under my left knee. At first, we thought it was coming from the knee brace that I wear for my bruised bone. Because of this, I decided to stop wearing it a couple weeks ago.

I’ve been putting bacitracin on it and covering it with some gauze and paper tape. Though it’s getting slightly better, I’m going to see a wound doctor on Tuesday so he can check it out. Hopefully it’s not something too serious and I can get rid of it within a short period of time. If not, it could turn even worse. I’m just glad that I’m going to go get it checked out.

Jenni

The Spirit of Giving

We’ve all heard that it’s better to give than to receive. I’m not exactly sure even where the idea came about where giving had to exactly be a gift. There’s nothing wrong with buying material things for others, but I don’t suppose that everyone has that in mind as something to receive. I know it comes with the thought that counts no matter what form it’s shown.

With the holidays coming around the corner, it’s important to realize this. As far as Christmas, I know the tradition is to give a gift or two to those you love, friends or someone else in your life bringing you joy. I myself like to make things for people. Whether it’s painting a picture or doing some arts and crafts, I feel like it shows more thought when it comes in the form of something handmade.

As for me, if I give something to someone it’s the peer joy that I receive by watching someone’s reaction to it. I also find pleasure in thinking of ideas in which to give something to someone. This also depends on what the occasion is. It could even just be a random act of kindness and a simple "thanks" to be exchanged. Whatever the reason, I think giving delights multitudes of people.

Jenni

I found an anonymous quote saying "the true spirit of giving is doing for others with no expectation of gain. It might be a gift you bought, one you made, or the gift of time or volunteer to benefit others. Giving means different things to different people and that’s how it should be. Giving is an emotion."

Life as a Quad IV: Maintaining Life as a Quad

Throughout the past 17 years of my life as a quadriplegic paralyzed from the neck down, I have learned how to manage any complications while staying positive along the way. Since my accident happened when I was 16, it amazes me to think that I’ve been in a wheelchair longer than walking. There were times of adjustment, although I feel like I’m at that point now where I’m just maintaining my life.

Although there is no cure for quadriplegia, there are ways to address the effects of it. Physical therapy can help with muscle and pain function. Caregivers can help ease the burden of family members. If any emotional issues come about, counseling can help with that. All of these improve the quality of life with quadriplegics.

Prior to my injury, I was active, adventurous and independent. One thing I’ve realized is that despite what happened, I’m still the same person inside. In my current situation now, I have greater control over my life. I try to maintain a connection on a physical and spiritual level of things.

I consider myself an advocate for the spinal cord injury community along with others in my situation. I also hope to show other people with spinal cord injuries the possibilities post-injury. Realizing that life expectancy after injury for a vent -dependent quadriplegic ranges, makes me very grateful for everyone that supported and helped me throughout my journey so far. I believe my presence along with outlook can show others that you can still have a happy and fulfilling life despite what happens.

Jenni

"So many of our dreams at first seem impossible, then they seem improbable, and then, when we summon the will, they soon become inevitable."

-Christopher Reeve

Happy Thanksgiving

More Than A Day

As Thanksgiving Day rolls around,
It brings up some facts, quite profound.
We may think that we're poor,
Feel like bums, insecure,
But in truth, our riches astound.

We have friends and family we love;
We have guidance from heaven above.
We have so much more
Than they sell in a store,
We're wealthy, when push comes to shove.

So add up your blessings, I say;
Make Thanksgiving last more than a day.
Enjoy what you've got;

Realize it's a lot,
And you'll make all your cares go away.

-By Karl Fuchs
 

Snow!

Between last night and this morning, we received a big snowstorm. Although some places got it worse than others, above is a video of my backyard. Despite the weather, my niece Avery was able to get outside and build a snowman. I can’t believe she’s already 6 years old!

Jenni

Abilitech Assist

There is always new technology evolving for people with disabilities. I recently came across a device called the Abilitech Assist. It is the first "powered orthotic device with shoulder assist that is designed to support users' functional activities of daily living. Powered by springs and motors, the hybrid system is custom calibrated to allow for independent movement to lift objects weighing up to 12 ounces. The body vest, with integrated lumbar sacral support, makes the device feel weightless and allows for extended use."

By assisting flexion of the shoulder and elbow, it has the capability to make it easier for people with upper-limb weakness or injury to improve their movement. For example, lift a utensil or pop can up to their mouth. Recently someone from their company came out to my house to show me the device, hoping that it would work on me. Although I don’t have enough muscle movement for me to be able to use it.

The woman who came out told me they are working on other devices that would allow someone with my level to improve motor function. Here is a picture of the Abilitech Assist:

Jenni

Speaking Again

The other day I spoke at Hopkins high school to a class called Peer Insights. I’m partial to speaking to them because I love the concept. It’s designed to integrate people with disabilities and their peers that gives insight to all types of situations. I was a junior in high school when I took the class (after my accident). We went on field trips, had guest speakers and did a lot of fun activities. This was the 3^rd time I spoke to this classroom; the last was in 2017.

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. I only spoke for about ½ an hour, but it was enough time to get in everything I wanted to say.

It didn’t faze me that I hadn’t spoken in a couple years. I wasn’t nervous like I used to get when I first started speaking. I would like to get into doing it more often. I used to do a lot more speeches, especially when I was Ms. wheelchair Minnesota in 2011. Lately I haven’t really had the chance or the opportunity. Although now if asked, I would for sure accept the offer.

Jenni

Winter Weather

It’s that time of year again. We’ve had a few days already with just some snow flurries, but today was the first time that snow stuck to the ground. Although the temperature is supposed to rise again tomorrow so I’m sure it’s not going to stick around yet.

I have mentioned before, but it’s difficult to take Brody outside for a walk on days like this. I haven’t taken him out for a few days because of the temperatures. I do remember when I first got him that I could bear the weather a little better than nowadays. Now that I’ve been getting sick more often, I’ve been more cautious about going outside when it’s too cold.

I’m hoping that this year’s snow and cold doesn’t get too bad. Although I do live in Minnesota, so I expect it at some point. At least I’m able to get outside sometimes now as opposed to when the weather shifts below zero. Then I’ll have to resort to more indoor activities such as playing board games and watching movies.

Jenni

Life

I live by this saying. Every now and again we are reminded how fragile life is. Some people take for granted even just the littlest things. Unfortunately, at least for me you don’t really know how to NOT take life for granted until you have a close call.

Jenni

Celebrating Another Year

Today marks the 17^th year anniversary of my accident. Every year I take the time to reflect on that day. I’ve talked many times about the accident, shared how it happened, and how my life has changed since. The first post that I wrote introducing details about it was in 2009. One thing I talked about is who was behind us when the accident happened.  

I was going through some paperwork the other day and came across a letter addressed to my family from a woman. She was the first car behind us and after witnessing it called 911. Within it she stated in depth details on what she witnessed, how she assisted, along with info about herself. The woman also left her information and at some point, was contacted. I do remember her visiting me in the hospital to see how I was doing.

It brings me great comfort knowing the efforts done by others in helping after. I don’t think I would be where I am today if the sequence of things happened any different. Thank you to everyone for your support and comfort along the way.

Jenni

Happy Halloween

I'm not a big fan of Halloween. Although I think it is cute when the kids get dressed up. I admit I used to dress up as a kid. One of my favorite Halloween costumes was when I was a cheetah in third grade. Oh yeah, and I used to like the candy. Now I only eat sweets every so often.

This year we only got a few trick-or-treaters. We don’t usually get that many kids come to our house. I think it’s because the houses in my neighborhood are so far apart. I find it interesting how some people decorate their yards like it’s Christmas!

Jenni

Infection Update

Just an update on my infection. My doctor called me today after getting the results back from my blood draw yesterday. Everything’s all cleared up and my levels are normal. I’m hoping that I’ll have another bout of months before getting another one. I say that loosely because I’m prone to them, and since I always have Pseudomonas in my lungs, it’s just a matter of time when it turns into an infection.

Today I got my PICC line pulled. A company just comes to my house to get it done. Also, I spoke with my doctor about a plan for next time I get an infection. Instead of getting another line placed, I’m going to get an Infusion Port placed. It’s a small medical device that is installed just below the clavicle. It stays in under the skin and can be accessed whenever needed. Basically, if I need frequent blood draws or IV medicines, they can use the Port to easily get directly into my vein.

Jenni

Another Infection

I thought I was in the clear for a while as far as respiratory infections. Although I started getting symptoms of one a couple of weeks ago. I sent a sample into the doctor and based off the results it turned out that I indeed had an infection. Whenever they sample my secretions, it’s always going to show that I have an infection called Pseudomonas. It just depends if my symptoms are increased or not.

Since I get it so frequently, oral antibiotics don’t always treat it very well. That’s when I need to get a PICC line placed so I can do in-home IV antibiotics. Unfortunately, I need to go to the doctor to get it placed under x-ray so they can make sure it goes directly into a large vein. They are sort of like an IV, but for longer-term antibiotics.

The initial length of the infusion was supposed to be 2 weeks. Although the last time they checked my blood it showed signs that my infection hadn’t quite cleared all the way yet. The doctor extended the course for at least another week and will let me know if I need more based off new blood test results from today. I am feeling much better now though so hopefully I’m given the all clear to get it pulled out soon!

Jenni

A Thank You to My Caregivers

I definitely feel like I’m improving every day. I appreciate everyone’s help in my recovery process and want to thank you for all that you’re doing. I believe it takes a team effort and that’s exactly what we are! There’s no I in team even though I direct my own cares. I know you’re doing the best you possibly can in making me feel comfortable and happy. Please know that your efforts do not go unnoticed, even if I may forget to say thanks. You are each very important to me and I believe with all of our work and dedication we can move mountains!

There may be moments where I might get emotional, strained, anxious, angry, upset etc. Please know that these feelings are not directed towards any certain one person or persons including the nurses. You’re all doing a great job at helping me in my life which is very important to me. I realize that in order to heal I need guidance finding a balance. Please don’t take anything personal at all as I understand it can be difficult on everyone.

It’s hard to recover and not have control of everything including cares that need to be done. I also have learned when it’s time to let go and let others in. I want the nurses to know and feel comfortable enough to tell me when they have things under control. This means not being afraid to speak up when they have concerns or questions. I myself believe it will help with communication between all of us.

Jenni

Smile with Poetry: Humor in Life

"If we cannot laugh at ourselves, life will become a dull and stifling experience. Life can be a challenge; of that there is no doubt. But if we take a moment to stop and see the joke, we can change our entire day. To those that take life seriously, we may see humor as an obstacle in our paths. The truth is that jokes are funny because they contain a grain of truth about life that would not be able to be shown through any other medium. A funny joke or poem has the power to point out subtle ironies of life that I might get shot in the head for if I were to say them straight out. Humor has the capacity to point absurdities about the way we live our lives in a non-threatening way."

Source: https://www.familyfriendpoems.com/poems/funny/

Celebrating My Birthday

Saturday, October 19 was my birthday and I turned 33. My family and I went to a restaurant called the Cheesecake Factory. They are an American chain restaurant offering sizable portions from a vast menu including 34 different flavors of cheesecakes. Their menu is huge; 21 pages long and over 250 different items to choose from. Although I’m not a big cheesecake fan, I do like a lot of their foods.

We also celebrated at my house where I opened some cards. I’m at that age where I don’t really need or want anything. Just being around family is enough for me. Throughout my family, there are a lot of birthdays in October. Every year since I could remember we get together as a family and celebrate what we call "October birthdays". That party this year was at the end of September.

Jenni

Changing Pages

My blog turned 11 years old on October 13. I find it hard to believe I’ve been blogging that long. It’s been filled with great posts of all different genres. In fact, I keep a column on the right side in which I can attach categories to each post. That way if someone is trying to find something specific, they can just click on the category and get it that way. A favorite part about blogging is being able to share my life with others while helping them as well. Also, it acts as a diary for me, allowing me to get my feelings out.

 

Every day I think about how many people are impacted by me or what I have written. Ever since I started this blog, my goal has always been to inspire others and encourage people to go on despite their circumstances. Regardless of difficulties and challenges that everyone experiences, my purpose is to show that it is possible to work through them; to demonstrate that no matter what obstacles we may face in life, there is a way to overcome them. All one needs is a little positivity and faith to know that everything’s going to be okay.

 

I’ve kept a tracker on it so that I as well as others could see how many people see my blog, read my writings, and maybe have been inspired by what I’ve said. Over the years, I’ve done blog posts whenever my blog has hit a certain number of visitors. I wanted whoever visited to know they weren't the only ones reading what I had to say. My blog has made a significant amount of progress since the beginning. I can now say that I’ve reached over 380,000 page views to this day.

Jenni

Starting the Day

Is there a good way to start the day? Some people I know are slow to get going in the morning even after 8 to 10 hours of sleep at night. Seems more tied to attitude and ambition towards the day than actual lack of sleep but I could be incorrect. I wonder, is there a technique, method or trick to becoming one of those people who wake up and feel like getting up right away?

I’m probably not on the average level, since I end up taking sleep medications in order to stay asleep. Although it seems like those don’t even help all the time, when I have a night nurse coming in every hour or so either giving me medications, turning me from side to side or just checking in on me. Most times I end up taking a nap for at least 30 minutes a day in order to make it through without falling asleep randomly.

At night I usually fall asleep around 11 PM or so when I take two of my sleep meds. The other ones I take during the middle of the night in order to stay asleep. I have a scheduled routine where I wake up at a certain time every morning in order to get everything done that I need to.

It turns out to be rather unproductive since 8 or 9 hours are supposedly adequate and 10-12 seems like a poor habit. I don’t drink coffee, but I know that helps some people. Also, I’ve heard eating an apple is a very good way to wake up. But if they aren’t awake enough to eat the apple, we are back to square one.

Jenni

Faith, Love, Peace and Joy

Faith: Bigger than yourself. I don’t claim to understand it. I trust in something bigger than myself.
 

Love: if you want to feel that kind of love, you have to give it first. It will change you and everyone around you.

Peace: Like a river… It flows and never stops.

Joy: Love, living, and sacrifice. I thank God for choosing me. It is well with my soul! This life I live.

-Anonymous

Being Kind Is on My Mind

There are many things in life that can be expressed throughout different people, cultures, countries etc. I believe that being kind to one another is one language that can be spoken without using words. Just the gesture of kindness transferred from one person to another is enough to change lives. Also, I think kindness is contagious and so being friendly also helps improve others’ lives.

I try to be as kind as possible to people. There are many throughout my time as a quad that I’ve come across including PCAs, nurses, friends etc. Without their help I wouldn’t be where I am today. That’s one reason why just adding kindness to my life is so important. Another is that I enjoy helping others and sharing my story.

Some benefits from being kind include better relationships. A reason it’s valued in various relationships is that kind people can be more empathetic. Also, there can be fewer negative emotions throughout life. I think the biggest thing is that it can increase health along with peoples’ self-esteem, making the world a better place.

Jenni

"Kindness is the language which the deaf can hear and the blind can see."

-Mark Twain

"You cannot do a kindness too soon, for you never know how soon it will be too late.  

-Ralph Waldo Emerson

"Kind words can be short and easy to speak, but their echoes are truly endless."

-Mother Teresa

Transferring

In order to transfer from my bed to my wheelchair, I use a ceiling lift. It’s a motorized device that lifts and transfers me from point to point alongside an overhead track. Some tracks can be ceiling mounted or freestanding. Mine is screwed into my ceiling and goes all the way to my bathroom. By using a string system, the track can be switched to go from my shower, toilet or bathtub. I mostly use it to take a shower and get in my wheelchair. Here are some pictures of what it looks like:

This is where it charges.

This is where the track changes from one area to another. To the left is my shower, straight ahead is the toilet and to the right is my bathtub.

The lift can also be used to weigh myself. I have a device that hooks from the lift to the bar; when I am in the sling, it shows my weight. In order to get it completely accurate, we need to subtract the weight of the sling and bar. Here is a picture of what the scale looks like:

Jenni

Brody Update

Just wanted to give you a quick update on Brody. He had his last session of physical therapy today and they said that he is doing better than expected. They gave him clearance to do short walks a few times a day along with his exercises. Here’s a video of him during water therapy:

Jenni

My Dog Brody

At the end of a blog post in August I wrote "Over the past couple of weeks my dog Brody was acting different. He wasn’t wanting to eat at times, go outside for walks, and looking a little down. We took him to the vet, but they didn’t find anything physically wrong. They prescribed him with some antibiotics, pain pills, and stronger allergy pills than he was on before. Over the past couple days, I’ve noticed he’s been feeling better. I’m glad that it wasn’t anything serious."

I thought it was just a phase he was going through; not wanting to jump on things like furniture. Although last Sunday morning I noticed that it was much worse; he was not able to walk anywhere with all 4 legs. Basically, he was using his front legs and dragging his back half across the floor, with the inability to pick himself up anywhere. He wouldn’t come over to his dish to eat and was struggling.

We took him into the emergency Vet clinic that day where they examined him. They told us they thought he had a herniated disc in his spine. Not completely sure where it was or how much of the spinal cord it was affecting, the only way to see was with an MRI. In order to get one, she had to take him to the University of Minnesota, which has a separate clinic and the ability to do one on him.

It showed that Brody did indeed have a slipped disc, where it was, and that surgery was the only option for fixing it. It was pinching his spinal cord, paralyzing him and causing loss of feeling. After contemplating about the odds of a 50-50 chance of recovery, we decided on going for it. Not long after, he went into emergency surgery where they removed most of the disc that ruptured.

The surgery wasn’t a "quick fix", which the doctor said was very common. They told us that it could take up to 2 weeks for him to regain feeling and movement. Although just after 6 days of recovery and physical therapy, he started moving his legs, walking a little bit and regained bladder/bowel control! It was a huge sigh of relief and prayers well answered. We picked him up from the University clinic yesterday.

He has strict instructions of limited yard time, walking distances and overall movement for the next 4 to 6 weeks. This is even after he gains strength and ability to move more. I’ve heard people say that dogs tend to look like their owners, but never take on the same disability. I find it ironic that out of all things he ended up with a spinal cord injury, just like me. I’ll keep you updated as he progresses over time.

Jenni

Unleashing my Situation

I love writing, especially if it's about me because it's another way to get things out that may be stuck inside. That’s one of the reasons why I have my blog. It’s kind of like my diary; a way to share my feelings even though it’s public. In high school and college I took creative writing classes and really enjoyed them. I’ve always thought about writing a book about my life. People have told me that I have a story that should be shared with the world. I suppose if I look back at old posts of mine I could compile them and it would create a book in itself.

I also enjoy speaking and sharing my story with others. I like to inspire them no matter what happens in life to stay positive, and believe that everything happens for a reason. I’ve said this to myself many times and it’s helped me get through situations in my life where I felt like things are out of my control. This is also how I’ve been able to overcome so many obstacles throughout my life, the biggest one being my accident. It’s one thing having a situation happen in your life and another to actually be able to overcome it when needed.

Jenni

Common Misconceptions

Everybody's fighting some form of stereotype and people with disabilities are no exception. The difference is that barriers people with disabilities face begin with people's attitudes-attitudes often rooted in misinformation and misunderstandings about what it's like to live with a disability. There are many obstacles that I face having a disability, but one of the most difficult is dealing with the common misconceptions that go along with it.

The first major misconception I think people have is that "everyone" in a wheelchair is unable to communicate. Just because they use a wheelchair to get around, doesn't mean they don't have the ability to hold a conversation or understand what you're saying. I think this is also true for people with more of a physical disability. In my own experience, some people have gone directly to my nurse or someone standing next to me to ask a question directed towards me that I’m able to answer myself.

Another misconception is that I need some sort of fixing or healing. For example, I’ve had people come up to me in public and actually say they will "pray for me" or wish me a speedy recovery. Being that I am used to it, my reaction is probably kinder than others would be. Usually I reply by just saying "thanks" not wanting to further along a conversation. But I’m sure others may take more of an offense to it.

I think that most misconceptions come with a lack of education, understanding or fear. That’s why by showcasing the abilities of people with disabilities, I can help clear some of the misconceptions out there and bring them to light. Those living with disabilities are valuable human beings who want to be part of something greater just like everybody else.

We have the same hopes and dreams along with being part of the community, not separate. I like to get out in public and talk to people in schools and conferences. It’s also one reason why I have my blog. My goal is to educate others about people with disabilities, reminding others to stop assuming anything based on outward appearances.

Despite all the challenges and struggles I've been through I continue to stay positive. I'm very  creative and like to inspire others. The biggest advice I give to other people is not to take things for granted, you never know what can happen.

Jenni

Follow-Up Post

I want to say I appreciate the comments I received from my last post about searching for feedback. It helped me realize that my blog helps more people than I knew. Also, I don’t always have to hear feedback to know people are reading what I have to say. Just the fact that I’m sharing my story, even if it affects only one person, is very satisfying.

This past month has gone by so fast. I’ve still been doing very well as far as my health. Last month I talked about how my right knee is healed although I’m still having left knee pain. The first time I had an MRI on it, there were signs of a torn MCL. After seeing the orthopedic doctor, he wanted me to get some images to see how it was healing. The injury hasn’t healed any more. He also found that I have some muscle atrophy and my kneecap is slipping out of socket. He recommended a different knee brace than I was using, and it’s been helping with pain.  
 
August 11 was my sisters 30^th birthday and August 16 was my niece Avery’s 6-year-old birthday. Avery had a birthday party this past weekend at an interactive indoor play area. The next day we celebrated both of their birthdays together.

Over the past couple of weeks my dog Brody was acting different. He wasn’t wanting to eat at times, go outside for walks, and looking a little down. We took him to the vet, but they didn’t find anything physically wrong. They prescribed him with some antibiotics, pain pills, and stronger allergy pills than he was on before. Over the past couple days, I’ve noticed he’s been feeling better. I’m glad that it wasn’t anything serious.

Jenni

Searching for Feedback

I’ve realized that one reason I created this blog is so that no one would feel alone. So that people would feel like they either had someone to look up to, something to look forward to, a person to help make their life worth living, or just lose their way in the life of someone else just trying to live theirs. Since my accident I had thought of myself as a person with a disability-never the other way around. I always strive to look on the positive side and even on my down days seem to find a glimmer of hope.

Lately, I haven’t written on my blog as frequently as I did when I first started it. Some parts were not really having the time, possibly fighting off illnesses or getting sidetracked with other tasks. Another part is I’m not sure how many other ways I can share my story. From this I get a great sense of satisfaction knowing that I could potentially be helping someone else along the way. I also treat it as a diary, to unleash my deepest thoughts; except it’s not so secret because hundreds of people could be reading it.

Very few know that it takes a lot of time and effort to write one single blog post. In the beginning it wasn’t as hard to write because it was all so new, I had many things to say. Since 2008, when I started my blog, it has been getting harder finding topics to talk about or share. As a result, I end up going a while between postings. Nowadays it takes me a couple of days, a week or even a month to finish. Also, I haven’t had that same feeling of satisfaction after writing a post like I did when I started. I suppose this could be another reason why it’s harder to write and finish a whole post.

I wrote a post in 2013 sharing that I’ve kept a tracker on my blog so that I as well as others could see how many people have read my writings, left comments and maybe have been inspired by what I said. Over the years, I would write a blog post every time I hit a certain milestone of visitors. Knowing the number of people reading my blog, I’ve encouraged all of you to pass my blog onto others. The more people that I can share my story with the better!

As you may tell by now, I’ve been stumped lately with ideas about posts to write about. I want to get ideas flowing and the inspiration back that I had in the beginning. One thing that helps is when people leave comments on my blog about how I impact them in some way or if they have questions when they read my writings. Maybe if I propose questions like, is there anything that I haven’t talked about that you would want to know about me? Is there something that I’ve written about that has helped you in some way?

I’m looking forward to hearing what people have to say by commenting. My goal is to reach as many people as possible.

Jenni

One Knee Down, One to Go

I remember earlier this year that I wrote a post about my knees. Based off a new set of x-rays, my right knee is healing by itself very nice. Although my left knee pain went away, I reinjured it about 3 months ago. Despite all the measurements I took and precautions I’m still having pain in my left knee.

The last time I saw the orthopedic doctor, he gave me the okay to stand. It’s too bad because since I started to stand again, it was helping the fluid in my body to shift. But because of my reinjury I am unable to stand right now. Hopefully I will get back to it soon. The Last thing I want is to reinjure it again. Even though it is good for the rest of my body, I’ll have to stay off my feet for a while.

I’m doing well respiratory wise within the last month since my update. I had another CT scan and found that the abscess still needed to shrink more so they put me back on antibiotics. I’m pleased to say that I’m off my antibiotics and have been using a vest treatment that helps get all the secretions out. I wish I would’ve had it all along since it’s so useful. Hopefully between that and other interventions that come about I’ll stay healthy! I’m going back in a week or so to get a follow-up CT scan just to see if the abscess is gone.

Also, since returning home from my last stay at the hospital, I’ve lost about 10-15 pounds of fluid. I think because I was so sick, it was causing the ability to keep my albumin up. Now that it’s normal, the fluid in my body is slowly shifting and draining easily. I feel much better and hopefully it will continue to drain.

Jenni

Tidying Up

I started becoming addicted to the show tidying up on Netflix. Here is the official description of it according to her website:
 
"When people lead busy lives, their homes sometimes become cluttered with things piling up over time. In this series, renowned tidying expert Marie Kondo tries to help folks declutter their homes -- and their lives. Whether she's helping a married couple with young children become more organized or showing a retired couple how to reclaim their space, Kondo assists her clients in clearing out the clutter and choosing joy in a series of inspiring home makeovers."

After watching this series, I decided to buy a couple of her books to help aid in my own process of decluttering my home. It’s not only helped me get some of my things decluttered, but it also freed up space. This helped make me feel better about how I was living. Before, I would either ignore things or just pass by and say to myself "I will organize that another time".

Here’s a video showing the amazing tips from Marie…

 

Jenni

Raising Monarch Butterflies

For the past few years, a friend of mine brings me monarch caterpillars. I enjoy watching the process of which they go through from caterpillars into beautiful butterflies. Here’s a little info about monarchs in case you don’t know:

“A monarch's life is a story of enormous transformation. They start as an egg, and within a few days they emerge as a ravenous caterpillar. After 10-14 days of munching away at milkweed leaves, the monarch forms a chrysalis. Over the next two weeks it undergoes a radical reorganization of its tissues, ultimately tearing free from its confinement as an adult monarch butterfly. If it hatched in the summer, it may live for another 2-5 weeks. In early fall, the final generation of monarchs has a special job: to migrate. This special generation may live up to 8 months…Monarch butterflies depend on milkweed plants. They lay their eggs on them because they are the only food the monarch caterpillars eat.”

This year she brought me four caterpillars. I got to watch the process of going from caterpillars to butterflies. Once they emerge from their crysalis, their wings stay wet for about 2 to 4 hours. That’s when I got the chance really watch them and even set one on my hand!

 
I have loved butterflies throughout my life, but more so after my accident. The reason being is because of the tremendous change they go through. It reminds me of the change I went through. To me, they are symbolic.

Jenni

Another Visit to the Hospital

I thought it was time for an overdue update on what I’ve been up to. About 7 weeks ago I was admitted to the hospital for pneumonia in both lungs and an abscess in my left. During my 5 day stay they gave me IV fluids, multiple antibiotics, albumin and a unit of blood. I went home on oral antibiotics and was feeling much better.

Since coming home, I’ve been trying to minimize my activity level, so I don’t wear myself out. The weather has been nice outside lately, so I’ve been taking Brody for a walk and roll as much as possible. This is aside from going to all my Doctor appointments. So far since the hospital visit, I have seen my Pulmonologist, ENT, OB/GYN, Orthopedic Dr., Primary doctor and had a CT scan.

Earlier this week, my doctor wanted me to have a CT scan to make sure the pneumonia was clear. Even though I'm feeling much better, the results came back showing that I still have a small abscess in my left lung, so they put me back on antibiotics. Hopefully soon everything will clear up and I will be infection free. The last thing I want to keep talking about is my health!

Jenni

Why I Started My Blog

The reason I started my blog was to replace my old CaringBridge website. It was to be filled with updates about me, pictures, links, stories, interesting facts, quotes, and much more. I realize those are a lot of topics to cover all-in-one site. Although since my first post in 2008 and this being the 537th, it’s become more than what it set out to be.

I’ve been told by many in person, anonymously, through comments on my site and more how much they liked reading what I have to say. I realized that my blog not only helped reach the lives of others, but also became like a diary to me. It feels good to be able to express myself while inspiring others. It’s so much fun to post my writings and opinions. The first month was going to be a trial to see how I liked it. Of course, that didn’t turn out to be the case!

I try to make my blog unique by adding a variety of different posts. All of them based on things I like along with info and updates about me. I wrote a blog post in 2013 about another milestone made in my life. It was about my blog reaching 100,000 visitors. A huge feat that I never knew I could or would accomplish. Now with almost 370,000 website views and 940 comments later, it’s the highlight of what I enjoy doing.

When it comes to talking about subjects about me, I am pretty much open to anything. I have found that conversations go the more intriguing questions you ask. You also get to know the person more when doing so. For example: what inspires you? What are you passionate about?
Is there anything you would like me to write about or are interested in knowing? If so, please leave a comment.

Jenni

Before and After

My dog Brody turned 7 in December. I can’t believe how quickly time flies. He doesn’t show any signs of slowing down and still plays with toys every so often. I still try to take him for a "walk and roll" whenever I get a chance. It depends on the weather and how I’m feeling respiratory wise. Lately it’s been nice outside with temperatures close to 50°F.

One thing that’s difficult with taking him during this time of year is that the snow starts to melt. Because he’s mostly white, his hair tends to get dirty quickly, especially if it’s long. I’ve mentioned before that as a Chinese Crested Powder Puff that he has hair not fur so it grows. We take him to the groomers to get his hair cut every couple of months or so. He also gets a bath and is nails trimmed.

Since it was winter, cold and wet I couldn’t remember the last time he got a haircut. That is until last week when he got a good spring trim! I’m not sure if he likes going to the groomers or not, but when he comes home, he gets so excited. Sometimes he acts like a puppy again and runs around then tries to get on my lap like he’s thanking me. Now when I take Brody outside, he doesn’t get as wet or dirty. I posted photos of him before and after.

Brody before

Brody after

Jenni

Injections Again

I went to an appointment to get Botox injections again today. I’ve been doing it for the past 10 years now, and I’m starting to feel it wear off faster than usual. The last couple of times they used an added drug that helps with pain along with the Botox. I found that the drug they added helps make it last longer. This is a good thing since I still have to wait to get injections every 3 months.

Also, PHS came out to my house and removed my PICC line. It’s too bad that the process for taking it out is so simple yet putting it in such a hassle. I have to transfer onto a table at the hospital so they can use an ultrasound machine to place it. When they remove it, someone trained can just take off the bandage and it easily pulls out.

Onto a different topic, I believe I’m developing seasonal depression during these winter months. It’s so difficult for me to get outside, take Brody for a walk, or even go to places other than doctor appointments. It doesn’t help when the weather is bad or I’m sick with a respiratory infection. Hopefully it’s just a phase and once the season changes so will my feelings.

Jenni

Rationalizing My Supplies

Due to the nature of my cares, I rely on multiple supplies in order to be more independent along with attending to my needs being on a ventilator. This may include parts to my ventilator, sterile gloves, trach supplies, syringes etc. They also provide all of my equipment that I use on a daily basis, such as my suction machine and vent. I have medical insurance which covers most of the supplies that I need.

Every month, the nurses check my inventory to see what I’m low on with supplies. They then have an ordering sheet that they go off of that shows how many supplies insurance allots and pays for each month. Based on that, they can put in the number of supplies needed but not go over the allotted amount. At the end of each month, the order sheet gets faxed in to the supply company and they ship the supplies to my house during the first week of the month.

 

Unfortunately when I use more of something than I usually do during any given month, the supply of that item runs out and I can’t order it until the following month. This is the reason for having to rationalize my supplies for certain things while I can. If I need it bad enough, I have to use a different style or pay for it myself. I’ve heard of other people having to do this as well; and if they don’t have a way to pay they just go without.
 

One specific item that I use more frequently throughout a 24 hour period is suction catheters. Looking back, I saw a post I wrote in 2013 that said I was only suctioning every couple of days. Based off certain times, like if I have a respiratory infection depends on how frequently I suction and how many catheters I use. Now it’s more like 7-10 times in a 24-hour period. I brought this item up because I’ve been running out of them before my allotted number per month.

Jenni

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