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