Quote of the Day

"It's not what you gather, but what you scatter that tells what kind of life you have lived."
-Anonymous

I totally believe in this quote. Things aren't everything. It doesn't mean anything unless it can show who you were and what you were capable of; unless it makes an imprint on others. It's the things you do and how you spread yourself. It's what you leave behind, memories and moments that capture everything about you. The things you scatter not what you gather.

Jenni

My Situation Now

I've been extremely busy lately with homework for my class. It's a lot of reading in a short amount of time. Luckily, I've been keeping up. I only have three more weeks until the end.

My chair situation is still the same. I haven't been getting out like I usually do because it's more of a hassle with this wheelchair. There isn't any built-in places for things like there was on my old chair. Everything is just kinda piled on; my ventilator is hanging on the handlebar and there is no place for the humidifier so I'm going without. Hopefully things will change soon, but for now this is what I'm dealing with.

Jenni

Using My Movement

I thought I'd show a video that was taken when I was at Gillette Lifetime Clinic for an OT appointment. In an earlier post, I talked a little bit about the environmental control unit called Relax II that I could run with my thumb movement. The pictures above are of the system and the micro light switch that plugs into it. The video below shows me pushing the switch and controlling it all by myself. A single tear started to roll down my cheek when I was doing it. This is the first time that I've actually used my movement to do something, even though it wasn't set up to anything. I was having trouble putting it on my blog so I uploaded it to YouTube. Check it out!



They let me take it home for a trial, but there's a slight problem. My thumb doesn't always cooperate so I'm not able to do it every time. Plus the switch is a little too sensitive so if my thumb is just a little bit tight it holds the switch down which makes me unable to use it. Hopefully when I get my new wheelchair they can mount something that comes around to my cheek and I can use it that way.

The picture below is of the page turner that I want to get. I can also use the switch to control that. Jenni

I Have Hope

Coping

Two people with callenges finding it hard to cope.
One with blindness and bitterness.
One with paralysis and hope.

The one with blindness and bitterness wonders,
what would of been.
The one with paralysis and hope wonders,
what will be.

The one with hope is happier and never gives up.
We all need hope.
To cope we have to accept what we are given in life.
To cope we have to have hope.
-Barbara Goodhew


I thought this poem was kind of interesting.

Jenni

About My Wheelchair...

Okay, so I have some news on my wheelchair. Unfortunately, they are not able to fix the problem. My wheelchair is officially dead. At this point, I'm okay with the fact that I'm going to have to get a new one. Since New Abilities went out of business and I'm going to have to find another way to drive my wheelchair, it does seem logical just to start all over. However, this means no wheelchair until however long it takes to go through the process of getting one.

I was able to get a rental manual wheelchair from a different vendor, called Key Medical. It is 10 times more comfortable than my manual chair and a lot more supportive; I fit in it perfectly. I talked to the manager at Reliable Medical where they have my wheelchair and he said that they could put a tilt mechanism on it. That way I can be in my wheelchair until I'm able to get a new one. The only thing is that the power isn't working to drive it so someone would have to push the chair, which weighs about 450 pounds with me in it. The manual wheelchair that I'm in now is a whole lot easier to push and maneuver around. I'm not sure which one I want to be in for the time being; I guess I'll have to decide when they deliver mine back to me.

I'm tired of dealing with Reliable because ironically their very unreliable when it comes to things. I'm going to go through Key Medical to get a new wheelchair. They're coming out next week to do an evaluation. After that they'll start the process. I think I'm going to try the sip and puff first. Hopefully it won't take too long.

Jenni

TGIO (Thank God It's Over)

Just finished my first online exam for my Mass communications class. I was on a time limit of 53 minutes to take it. Didn't quite finish the whole thing on time; I'm not used to those kind of tests. I was even given extra time. Everyone else only got 35 minutes. It was so hard too! I've never taken a summer class before, but man are they a lot of work. The exam covered seven chapters and three mini lectures. It's only been two weeks since I started. Glad it's over though. Definitely going to relax tonight.

Jenni

New Look

I decided it was time for a little change. Blogger had some new templates available so I thought I'd try one out. There's tons to choose from but I think this one looks nice. What do you think?

Jenni

Hanging in There

I'm still in my crappy old manual wheelchair. I had my mom drop off my electric wheelchair at Reliable yesterday. Good thing too because it was something they couldn't fix right away so they had to keep it overnight. I was just going to go there, but I'm glad I didn't. I called today and the guy said that they might be able to deliver it back out tomorrow so we don't have to pick it up. Hopefully they will be done with it by the end of today.

I'm so uncomfortable in this wheelchair. There is no support and my back and neck are sore from sitting in it. I've been having to change positions a lot to keep from hurting too much. I definitely hope that tomorrow will be the last day I have to use it for a long time. I've been kind of depressed the past few days being in a different wheelchair and without independence. I haven't gone anywhere out of the house at all because I just don't feel like going anywhere in this contraption. Someone has to push me and I don't like that at all. Plus it's raining outside today which makes me even more depressed not be able to go outside. Anyways, I'll keep you updated on what happens.

Jenni

Finding Independence

A week ago I went to Gillette Lifetime clinic in St. Paul for an occupational therapy appointment. My plan was to see if they could help me find some things that could make me more independent.

The first thing we talked about was an automatic page turner. A switch could be attached to it that I could push with my cheek or chin to turn the pages. I picked one of two options that I liked. I didn't realize it but page turner's aren't cheap. It would cost a little over $3000 for it. The other one was almost twice as much. I'm sure I could get an outside source to pay for it. It would be great for my school textbooks. I've tried reading books on my computer before but it's just too difficult. It hurts my eyes to look at the screen for too long. I also thought about a portable e-reader such as the Amazon Kindle or nook from Barnes & Noble, but someone would still have to push the button to turn the page. They don't have anything out there like that that's voice-activated or able to operated by a switch.

The second thing I looked at was an environmental control unit that can be activated by any type of switch. When I was there, I found out I could operate it by a switch using my left thumb. The only problem is that my hand doesn't always cooperate and if it's tight, I'm unable to move it. The other option is to mount the switch to my wheelchair and have it come around to my cheek. I could then push my cheek out using my tongue to hit the switch. That's probably going to be the best option.

Sadly, New Abilities, the company that I got my tongue touch keypad from, went out of business. Apparently it happened last summer. I received a letter from them at the time that explained this but when I called, they denied it. I'm guessing they just wanted people to keep sending them money because they didn't have any funding left. When I was at Gillette, the OT confirmed with me that they weren't in business anymore and that they had called telling them not to refer anyone.

The third thing we talked about were other options for driving my wheelchair. The three that could possibly work for me would be a sip and puff, a chin joystick or head control. I need to call another company, Reliable, to set up an appointment to go over this further. I think I might try the sip and puff first because I've tried the chin joystick before and I don't think I want that and also I don't have much head control so that way might be hard.

*Note: Wheelchair Troubles-I wrote this post a few days ago but hadn't published it yet. Two days ago my electric wheelchair all of a sudden stopped working. After looking for a while, we found a cord that had been pinched and had exposed wires. That's the reason the electric part in the chair went out. It is able to be moved manually, but it is very heavy and hard to move. Also, the tilt and recline mechanism is out as well. The last two days I've had to use my manual wheelchair. It is the most uncomfortable thing to sit in; I don't know how I did it for 3 1/2 years. I'm going in to reliable medical tomorrow so they can hopefully replace the cord. Then I'm going to talk to them about other options for driving my wheelchair.

Jenni

Trees That Wood

Once there were three trees on a hill in the woods. They were discussing their hopes and dreams when the first tree said, "Someday I hope to be a treasure chest. I could be filled with gold, silver and precious gems. I could be decorated with intricate carving and everyone would see the beauty."

Then the second tree said, "Someday I will be a mighty ship. I will take kings and queens across the waters and sail to the corners of the world. Everyone will feel safe in me because of the strength of my hull."

Finally the third tree said, "I want to grow to be the tallest and straightest tree in the forest. People will see me on top of the hill and look up to my branches, and think of the heavens and God and how close to them I am reaching. I will be the greatest tree of all time and people will always remember me."

After a few years of praying that their dreams would come true, a group of woodsmen came upon the trees. When one came to the first tree he said, "This looks like a strong tree, I think I should be able to sell the wood to a carpenter" ... and he began cutting it down. The tree was happy, because he knew that the carpenter would make him into a treasure chest.

At the second tree a woodsman said, "This looks like a strong tree, I should be able to sell it to the shipyard." The second tree was happy because he knew he was on his way to becoming a mighty ship.

When the woodsmen came upon the third tree, the tree was frightened because he knew that if they cut him down his dreams would not come true. One of the woodsmen said, "I don't need anything special from my tree so I'll take this one", and he cut it down.

When the first tree arrived at the carpenters, he was made into a feed box for animals. He was then placed in a barn and filled with hay. This was not at all what he had prayed for. The second tree was cut and made into a small fishing boat. His dreams of being a mighty ship and carrying kings had come to an end. The third tree was cut into large pieces and left alone in the dark. The years went by, and the trees forgot about their dreams.

Then one day, a man and woman came to the barn. She gave birth and they placed the baby in the hay in the feed box that was made from the first tree. The man wished that he could have made a crib for the baby, but this manger would have to do. The tree could feel the importance of this event and knew that it had held the greatest treasure of all time. Years later, a group of men got in the fishing boat made from the second tree. One of them was tired and went to sleep. While they were out on the water, a great storm arose and the tree didn't think it was strong enough to keep the men safe. The men woke the sleeping man, and he stood and said "Peace" and the storm stopped. At this time, the tree knew that it had carried the King of Kings in its boat.

Finally, someone came and got the third tree. It was carried through the streets as the people mocked the man who was carrying it. When they came to a stop, the man was nailed to the tree and raised in the air to die at the top of a hill. When Sunday came, the tree came to realize that it was strong enough to stand at the top of the hill and be as close to God as was possible, because Jesus had been crucified on it.

The moral of this story is that when things don't seem to be going your way, always know that God has a plan for you. If you place your trust in Him, He will give you great gifts. Each of the trees got what they wanted, just not in the way they had imagined. We don't always know what God's plans are for us. We just know that His ways are not our ways, but His ways are always best.

by: Bill Greer, Chicken Soup for the Veteran's Soul

Under Construction

About a week ago my sister's room which is right next to mine flooded with about 3 inches of water. Somehow one of the pipes in the wall cracked and when the water got turned on for outside, it started coming in through the ceiling of the room. My mom noticed the water when it was coming down the hallway towards my room. Everything was wet. Once they got most of it cleaned up, they had to rip up the carpet in her room, down the hallway, and even some in my room where the pad underneath it was wet.

After a day or so they opened up the ceiling and fixed the pipe. A few days after that, they had to rip apart some of the wall and installation that was still wet. Needless to say our basement looks like we're under construction. I think we're planning on ripping up all the carpet and putting in laminate. Not quite sure how they're going to do my room yet, but I'm really excited. I've wanted hard floors in the basement for a while. I think it'll look really good and will be nice rolling over it with my wheelchair. Good thing my sister doesn't live here.

Jenni