Wednesday, June 19, 2019

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

Thursday, April 18, 2019

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

Saturday, March 23, 2019

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

Thursday, March 7, 2019

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

Saturday, March 2, 2019

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

Thursday, February 28, 2019

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

Thursday, January 31, 2019

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

Friday, December 28, 2018

Winter Update

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

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


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

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

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

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

Jenni


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

Friday, September 14, 2018

Sharing My Story


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

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

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

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

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

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

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

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

I’m sure there are many more stories like the ones I have shared that have happened and are going to in the future. I’ve always thought about writing a book about what happened to me and my journey throughout life, especially since I love to write. It would also create connections and hopefully bring joy along with inspiration to others.

Jenni

Thursday, July 12, 2018

Summer Update

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

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

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

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

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

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

Jenni