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