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