Standing Frame

I thought I would give an update on my standing since it's been a while. The last couple of months I've been going in my stander 2 to 3 times a week. I no longer do it with physical therapy; my nurses and PCA's are now trained in and are able to help me with it. This leaves more time for stretching and strengthening in physical therapy. I also was able to cut down on physical therapy from four times a week to three.

When I first started using the standing frame last year, it took me many times before I was able to get up to 90°. My body had to get used to standing again. My blood pressure would drop as well making it harder to stand for long. After a while, I began to get used to it and was able to get up to 90° and also stand for a longer period of time.

For some reason in the past few months I hadn't been able to get up to 90°. In fact I was only able to get up to about 60°-70° before my blood pressure would drop and I had to go down. Plus, it took me about 30 to 40 minutes before I could even get up to that. Yesterday, I was in the stander for about an hour. I was so excited because for the last 15 minutes I was able to be up at 90°. I probably could have stayed longer because my blood pressure was still fine except that I got too tired and that's why I chose to sit back down.

I don't know why or how I was able to get up to 90°. I went in the stander this morning and was only able to get up to about 65°. I'm hoping I'll have many more days like yesterday. I thought that the more times I stood the more my body would get used to it and my blood pressure would adjust, but I guess I have to be patient. It's great that I'm even able to stand in the first place. The other thing is that 60° is still weight-bearing, so even if I don't get up all the way every time it's okay.

Jenni

Goal

Wow! Over 8000 visitors. I'm waiting for the day that the number of visitors hits 10,000. It won't be long now. Maybe I'll have a party. I encourage all of you to pass my blog onto others. The more people that I can share my story with the better!

Thanks for all of your questions and support. You are the reason I keep my blog going.

Jenni

Medications

I have 15 separate medications that I either swallow as pills or are given to me each day. I know that sounds like a lot but it's definitely lower than what it used to be. I've tapered off a bunch of other medications that I used to take but no longer need anymore. I also have many PRN medications that I'm able to take if I need them.

I have two nebulizers, Xopenex and Pulmicort, that I do twice a day. I take both a multivitamin and a calcium pill every day. I also take Allegra for my seasonal allergies. Some of the other medications that I take are Celexa (antidepressant), Colace and Miralax (both stool softeners), cranberry pill, Ditropan and Gentamicin (all for the bladder), and Clonazepam (sleep medication). I have a baclofen pump (for muscle spasms) that runs baclofen into my spinal cord at certain times of the day.

All of these medications serve a different purpose. Many people take medications for various reasons. These are just most of the ones that I take.

Jenni

Exciting Update!

The teacher from the watercolor art class just called me. She said she was able to get a few people from the earlier class to switch to the afternoon class. That means I'll be able to start attending the class next Monday. I'm so excited! I'm glad everything worked out! I will definitely post some pictures of things that I paint.

Jenni

Listen to the mustn'ts child.
Listen to the don'ts.
Listen to the shouldn't haves, the impossibles, the won'ts.
Listen to the never haves, then listen close to me.
Anything can happen child.
Anything can be.
-Shell Silverstein

Not Enough People

Last Friday I signed up for a watercolor class at the Edina Art Center. It was a six session class every Monday from 1:00 PM to 3:30 PM starting today. I scheduled a ride to pick me up and got there about an hour early. Right before the class, I went to the classroom to wait for it to begin. I asked the woman that was in the classroom if this was the watercolor class starting at one o'clock. She had this look on her face and she said that she'd just finished a class. She also told me that the one o'clock class was canceled because not enough people signed up. Turns out only two people had signed up for the class (me included) so they canceled it. Only they forgot to call me to let me know so I showed up.

The teacher of the class was super nice. She said she could call a few people from the earlier class to try to form the afternoon class. I told her it wasn't a big deal. She insisted on having me in her class. She told me she's going to call me tonight to let me know if there's going to be a class. I was really excited to be in this class but what can you do. Things happen. I just hope she can find a few people to form a class so that I can go next week. If not, there is another Art Center closer with a watercolor class starting Thursday that I could probably sign up for.

Jenni

My Ventilator

My ventilator is the most important thing in my life. It is what's keeping me breathing; keeping me alive. I have been getting a lot of questions about my vent, so I thought I would share with you the inner workings of my ventilator and how it feels to be on one.

I have two separate vents, one at bedside and one on my wheelchair. This makes it a lot easier to get around. When I get up into my wheelchair in the morning, all I have to do is switch to my wheelchair vent and off I go. The two ventilators are fairly similar except that my bedside vent has more features and is a higher model. Therefore, they are a little bit different from each other. That is why they have different colored tubing.

Next, I will talk about the vent itself and how it works. The first picture above is of the whole contraption. The second picture is of the actual machine. It is basically like a computer. It remembers everything that ever happens, including time and dates of alarms. The vent works fairly smoothly. The machine itself pulls air into the side of the vent and then forces the air through the tubing, into my lungs. That is one full inhale breath. Some of the air exhales out of the PEEP (or exhalation) valve on the tubing and the rest exhales either out of my nose or mouth, depending on if I'm talking or not. I receive 18 breaths per minute and the amount of air I receive per breath is 700 mL. This is called the title volume.

Attached to my vent and tubing is a humidifier chamber. The third picture above is of the humidifier. The chamber has to be plugged in to work and when it is turned on, a part of it heats up to a desired temperature. It then heats the air being pulled in from the ventilator going into my lungs. There is a bag of water attached to the humidifier to moisten the air as well (the fourth picture is of the water hanging up). If the humidifier is not plugged in, the air is fairly cold. There is a humidity sponge attached to my wheelchair tubing that moistens the air when the humidifier is not plugged in. It gets taken out when the heat is turned on. If there is no humidity going into the tubing and no humidity sponge, the air is very cold on my lungs. It feels like when you go outside in extremely cold weather and take a deep breath and feel that icey pain in your lungs.

The vent will alarm in many different occasions, especially if something is wrong. If the tubes pop off anywhere along the vent, it will sense the leak and alarm. It will display "Low Pressure" on the screen of the vent. The ventilator is hooked up to a battery that lasts about 3 to 4 hours. When the battery drains out, the vent will alarm and display "Low Power", letting you know that you need to change the battery. The internal battery on the ventilator only lasts about 45 minutes to an hour.

At first, it was hard to adjust to being on the vent. I had to learn to breathe and talk differently. Now it feels as normal as breathing regularly. I am able to do something called neck breathing for about five minutes when the tubing is taken off. This allows me to change my shirt and switch ventilators more efficiently without having to hurry. If anyone has any other questions that I have not answered in this post, let me know either by e-mail or posting a comment and I will try to answer them.

Jenni

Watercolor

I had mentioned a couple posts ago that I have been painting a lot lately. Within the last week I painted four watercolor paintings. That is a lot for me. I love painting, but if I do it too much my neck gets sore.

Last Monday, I ordered 33 tubes of watercolor and 10 huge sheets of watercolor paper. That was a big order. It's easy to spend a lot when ordering art supplies. I already had 18 tubes of watercolor before. I'm trying to expand my colors and give myself some more variety to work with. I keep using the same colors only working them different ways. I will have to put up some more pictures of my paintings when I start using my new colors. They just arrived today. I'm so excited!

Jenni

The Weather

Do you ever realize that when someone wants to start up a conversation, the first thing they bring up is the weather? Whether it's a close friend or family member, a coworker, or a stranger in the elevator, it seems that the weather is the one topic that everyone has an opinion about. It doesn't matter if they are happy about the weather or complaining about it, people listen and also give their own opinion. It's a great icebreaker, especially in awkward situations.

I admit that I have brought up the weather in many conversations. I guess it's just easier to talk about something that everyone has in common and that everyone experiences. Now that I've said all that, I'm going to talk about the weather here in Minnesota. Hey, why not?

I've been doing a lot of complaining lately. Our month of May was one of the driest we've had in a long time. For a while I was complaining about how dry it was. We definitely needed rain. One weekend the rain finally came, and stayed. We had four straight days of dark, cloudy, rainy weather. It made me not want to do anything. It was so dark outside most of time that I slept a lot.

Yesterday was gorgeous. My nurse and I went for a walk/roll down the street. Today I was outside as well. It's about 84° and pretty humid right now. I wore sunscreen both days, but apparently not enough because my arms and face are a little red. Not much I can do about that now.

Jenni

Life Without Limbs

Nick Vujicic defines the word inspiration. He carries with him faith, courage, and strength. Nick was born without arms or legs and given no medical reason why. Despite the obstacles and challenges that he faces every day, he continues to motivate and inspire others. Nick is 26 years old and travels the world as a motivational speaker. He has never let his disability get in the way of living his life and helping others.

I wanted to mention Nick on my blog for a few reasons. I think he is definitely someone that everyone needs to know about. Think your life is hard? Think things aren't going your way? Take a look at how he deals with life; how he accomplishes each day independently. It makes you think about the things you do have and how many things people take for granted. Exactly why I am doing this blog.

I have posted a video of Nick below. It is an older video from YouTube, but it shows exactly how he goes about doing things for himself without limbs. He truly is amazing!



Jenni

"I believe that fear is the greatest disability of all."
-Nick Vujicic

Pressure Sores

It is important for people who are unable to move themselves and lay in bed often 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.

Luckily, I have never gotten a pressure sore that has gotten out of hand. One thing that helps me 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 a few times so that they are not in the same position for too long. My wheelchair also reclines and tilts, so I am 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. During the night when I am sleeping, my nurse comes in and turns me on my right side; three hours later I get turned on my back. After about an hour, they turn me to the other side for three more hours. It's a lot of movement and there are many times that I wake up from just that.

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 between four chambers in the mattress to change pressure from one spot to the other. It is extremely comfortable and essential for preventing bedsores. My wheelchair cushion that I sit on is also filled with air for the same reason.

Jenni

Things You Don't Think About

Being paralyzed is difficult. Many people don't realize or think about some of the things that I go through on a daily basis. I struggle with not being able to do things for myself. Even simple, little things like not being able to feed myself, brush my hair, or wash my face become more complicated and daunting tasks just because someone else is doing for me. It is exhausting for me to sit in my wheelchair all day and not be able to just get up and do the things that I want to do. Unless someone is or has been paralyzed, there is no true way that they will ever know what it is like. However, I do encourage many people to try to experience as best they can what it is like not to be able to move.

I encourage all of you reading to take five minutes out of your day. My challenge to you is to sit still for those entire five minutes. That means no scratching itches, moving the hair out of your face, repositioning for comfort etc. After you have completed this challenge, whether you finished successfully or failed miserably, I want you to think about what it would be like not being able to move for the rest of the day, week, month, year or even for the rest of your life. Think about having other people (i.e. caregivers, your family, spouse) do everything for you.

I have proposed this idea before, but I'm not sure if anyone tried it. This time I want to hear feedback. I want to know what you thought about not being able to move for just five minutes, let alone for the rest of your life. I'm not saying that I'm not going to be able to move for the rest of my life. I'm just proposing the idea for others to think about what people with disabilities (especially those with paralysis) go through on a day-to-day basis.

Jenni

Yay for Me!

They ended up fixing my wheelchair yesterday. After a month and a half of my wheelchair not working, I'm finally able to drive it myself. I have gained some independence back and I don't have to rely on others to help get me around places.

Today my nurse and I went for a walk (roll rather) around my block. It was weird being able to do it myself again, but it was a lot of fun. I am hoping that nothing like this happens to me again anytime soon or ever.

Jenni

Getting out

Yesterday I went to Northwestern bookstore down the street from my house. I love looking at all of the trinkets and knickknack stuff that they have. I bought a couple of CDs, a glass vase with birds on it, and a little statue that's heart-shaped with a cross in the middle of the heart. It has a bird on top of it and inscribed on the heart is a message that says "miracles happen every day". I also bought a license plate holder for my van that says "don't drive faster than your guardian angel can fly".

Today I'm going out to lunch at Gold Nugget. It's the restaurant that my sister works at as a waitress. She's going to be working today and I'm hoping she will get to serve us. I'm going with my mom, my grandma, my aunts Sandy and Julie, and my cousin Meagan.

Later today I'm going to reliable medical to finally fix my wheelchair. The parts came in from California the other day. I'm imagining my fingers crossed in hopes that it will work this time. I will let you know what happens.

Jenni

Tolerance

If Only

If only we saw
What our eyes don't see
If only we heard
What our ears don't hear
If only we could walk
The steps unstepped
Just maybe
We'd wake up one day
To find ourselves
Someplace unsaid
Somewhere never heard of
Or ever revealed
In the midst of all eternity
If only...
-Lia Nuno

Jenni