Now That the Excitement Is over…

Christmas is over and the new year is approaching. We had lots of family over to celebrate. It's a lot of work to entertain, and we are exhausted but thankful. It works out best if people come over to our house instead of me going out because most other places aren't accessible. But it does make for hard work and long days. I'm enjoying my time off from school, but will be ready to go back in a couple weeks when it starts up again. My latest favorite thing to do when I'm bored is play Scrabble. It takes a while to play but it's a lot of fun and I'm learning at the same time; keeps my mind busy. My sister's been home from California and that's been nice. Although she flies back on Saturday for seven more months. Otherwise everything else has been good.

I hope everyone else had a nice holiday.

Jenni

Forgiving

The Compassion of Love Is the Compassion of Forgiveness

Many people are locked up in guilt,
feelings of unworthiness,
broken hearts and spirits,
fearful of being rejected.

To forgive is to call back
and to reveal that the person is loved, cherished,
and full of worth;
to forgive is to liberate
from the broken, crushed self image,
from feelings of guilt.
Forgiveness is to refined
the kiss of peace,
the kiss of covenant,
and to celebrate unity.

Forgiveness implies an understanding
of our own poverty, wretchedness, brokenness, and sin;
it implies too an openness
to receive the hand and words of love.
-Jean Vanier

Merry Christmas and Happy Holidays Everyone! :-)

Long Update

I received my grade the other day for my final and for my class. On my test I got 67%, which with a curve turned out to be a C. In the class I got 81% which is a B. I'm really happy with my grade especially since it was such a hard class and I didn't think I would do that well. I'm enjoying my well needed break and just waiting for Christmas to come and to see what the new year brings.

Surprisingly, I'm recovering well from getting my wisdom teeth pulled. Up until yesterday I had hardly any pain at all. Everyone was telling me how bad it is and how much it hurts, but luckily I didn't experience that. For a few days my mom was putting all my food in a blender, including soups, pot roast and even salad (yes, salad. I had to get my greens in somehow. It was actually quite good!) Then I went on to eating soft foods like noodles and now I'm just starting to eat solids. Although I don't know if I'm quite ready since my jaw is hurting today. Maybe I started too soon with the good stuff.

Today I went to my sleep Dr. just for a yearly visit. Aside from my lack of sleep during finals, I've been sleeping pretty good compared to how it used to be. There was a blizzard warning today but I ignored it and went out anyways. They were saying 4-8 inches (about 10-20 cm) of snow. That's nothing compared to the 17 inches (roughly 43 cm) a week ago Saturday. It took an hour and half to get home when it should have only taken a half an hour. Traffic was really bad and so were the roads because nothing was plowed yet. That's Minnesota for you.

Tomorrow I'm planning on going Christmas shopping since I haven't done any yet. I'm not sure what I'm going to get everyone. The worst is to go shopping with no list. There are three types of shoppers: the ones who do their shopping months before Christmas and buy little stuff at a time; the ones who wait until last minute like the week of Christmas (that would be me); and the people who go out with the intent of buying presents for others but end up buying stuff for themselves instead. I'm hoping to find at least a few things since Christmas eve is just four days away. I definitely think it's better to give than to receive, and it feels better too.

We are hosting Christmas eve and Christmas day at our house with family. What are everyone else's plans for the holidays?

Jenni

Time to Relax and Recover

The last two days have been extremely busy and tiring.

On Monday I took my final for my environmental biology class. It was the hardest test I've ever taken. Overall it was 158 points, with multiple-choice, definitions, short answer, and an essay question. It took me over three hours to complete. I'm not sure what I got yet, but I'm glad it's over. For the spring I signed up for intercultural communications at Normandale community college and stress management online.

Yesterday I got my wisdom teeth pulled. I only had three of them. They put me under general anesthesia and then reversed it right away when they were finished. Apparently it only took 20 min. but to me it felt like 2 min. Afterwards they shoved gauze in my mouth and sent me on my way. I couldn't drive my wheelchair because my mouth was numb so my nurse had to do it.

I had some pain with it last night. I think I only slept about 1 1/2 to 2 hours; and that was with one of my sleeping pills and Vicodin (which they prescribed me for pain). It's also supposed to make you relax and sleepy, but I think it had the opposite effect on me. The pain is pretty much gone now, but I'm exhausted from being awake all night and all day.

Jenni

Spasticity & Muscle Spasms

My spinal cord injury is at C-1 C-2 and I am an incomplete quadriplegic. That means I have some connectivity going through my spinal cord from my brain to my body. It also means that I have spasticity and lots of muscle spasms. I have pasted below some information about this and some things that I go through.

Following a spinal cord injury, the nerve cells below the level of injury become disconnected from the brain at the level of injury. This is due to scar tissue which forms in the structure of the damaged area of the spinal cord, blocking messages from below the level of injury reaching the brain. Spasticity does not occur immediately following a spinal cord injury. When an injury occurs to the spinal cord, the body goes into spinal shock, and this may last several weeks. During this time changes take place to the nerve cells which control muscle activity.

Once spinal shock wears off, the natural reflex which is present in everyone reappears. Spasticity is an exaggeration of the normal reflexes that occur when the body is stimulated in certain ways. In an abled bodied person, a stimulus to the skin is sensed, and a sensory signal is sent to the reflex arch where it travels to the brain via the spinal cord, the brain then assesses the stimulant, and if the stimulant is thought not to be dangerous, an inhibitory signal is sent down the spinal cord, and cancels the reflex from moving the muscle.

In a person with a spinal cord injury this inhibitory signal is blocked by the structural damage in the cord, and the natural reflex is allowed to continue resulting in a contraction of the muscle.

I didn't start having spasms until a couple months after my accident. That's also when I started to feel tingling throughout my whole body. The tingling drove me crazy and kept me up at night, so they put me on a medicine to help so I wouldn't feel it. After a while it turned into the feeling I have today, which is pressure in most areas. I can feel the most on the top of my arms.

Muscle spasms can occur in a person with a spinal cord injury any time the body is stimulated below the level of injury. This is usually noticeable when a muscle is stretched, or there is a painful stimulant below the level of injury. Because of the injury to the spinal cord, these sensations can trigger the reflex resulting in the muscle to contract or spasm.

When my arms are lifted in the air it causes a full body spasm. Also, if the water is too hot in the shower my body lets me know by spasming. I cannot feel hot or cold, so the spasms are a good thing.

Almost anything can trigger spasticity. Some things, however, can make spasticity more of a problem. A bladder infection or kidney infection will often cause spasticity to increase a great deal. A skin breakdown will also increase spasms. In a person who does not perform regular range of motion exercises, muscles and joints become less flexible and almost any minor stimulation can cause severe spasticity.

I have not had a bladder infection since April 2009. This is very good for me because I used to get them back to back. I knew I had them because my muscle spasticity would increase a great deal, telling me something was wrong. I do range of motion twice a day to keep my muscles moving and flexible.

Some spasticity may always be present. The best way to manage or reduce excessive spasms is to perform a daily range of motion exercise program. Avoiding situations such as bladder infections, skin breakdowns, or injuries to the feet and legs will also reduce spasticity. There are three primary medications used to treat spasticity, baclofen, Valium, and Dantrium. All have some side effects and do not completely eliminate spasticity.

There are some benefits to spasticity. It can serve as a warning mechanism to identify pain or problems in areas where there is no sensation. Many people know when a urinary tract infection is coming on by the increase in muscle spasms. Spasticity also helps to maintain muscle size and bone strength. It does not replace walking, but it does help to some degree in preventing osteoporosis. Spasticity helps maintain circulation in the legs and can be used to improve certain functional activities such as performing transfers or walking with braces. For these reasons, treatment is usually started only when spasticity interferes with sleep or limits an individual's functional capacity.

Many people with spinal cord injuries don't like muscle spasms, and I used to be one of them. Then I realized that spasms are actually a good thing. Because I'm not moving regularly, they help burn calories. They also help stretch my muscles and change position. My body feels nice and relaxed after a spasm, which helps with my muscle pains in my back and neck. Spasms don't hurt me at all, but I know for some people it can be painful.

A surgical procedure called a radiofrequency rhizotomy is sometimes indicated in the treatment of severe spasticity. Another treatment of severe Spasticity is the implantation of a Baclofen Pump. The pump delivers a programmable amount of baclofen directly to the fluid surrounding the spinal cord. The drug then inhibits the reflex signal in the reflex arch of the cord stopping stimulation of the muscle to spasm. Because the drug is delivered directly to the spinal cord, a very small amount can be used in comparison to a large amount which may have to be taken orally. Once a baclofen pump is implanted, oral anti spasmodic drugs are usually stopped.

I have a baclofen pump surgically inserted. If I didn't have it, I would be spasming constantly and continuously. It is turned up to the highest dose it can be for me, and that the doctor will allow. I'm comfortable with where it's at because I spasm just the right amount, but not too much. I want some rigidity in my muscles for the purposes above.

Jenni

For more information go to Apparelyzed.com

You Get Proud by Practicing

by Laura Hershey

RIP

If you are not proud

For who you are, for what you say, for how you look;

If every time you stop

To think of yourself, you do not see yourself glowing

With golden light; do not, therefore, give up on yourself.

You can get proud.

You do not need

A better body, a purer spirit, or a Ph.D.

To be proud.

You do not need

A lot of money, a handsome boyfriend, or a nice car.

You do not need

To be able to walk, or see, or hear,

Or use big, complicated words,

Or do any of those things that you just can’t do

To be proud. A caseworker

Cannot make you proud,

Or a doctor.

You only need more practice.

You get proud by practicing.

There are many many ways to get proud.

You can try riding a horse, or skiing on one leg,

Or playing guitar,

And do well or not so well,

And be glad you tried

Either way.

You can show

Something you’ve made

To someone you respect

And be happy with it no matter

What they say.

You can say

What you think, though you know

Other people do not think the same way, and you can

keep saying it, even if they tell you

You are crazy.

You can add your voice

All night to the voices

Of a hundred and fifty others

In a circle

Around a jailhouse

Where your brothers and sisters are being held

For blocking buses with no lifts,

Or you can be one of the ones

Inside the jailhouse,

Knowing of the circle outside.

You can speak your love

To a friend

Without fear.

You can find someone who will listen to you

Without judging you or doubting you or being

Afraid of you

And let you hear yourself perhaps

For the very first time.

These are all ways

Of getting proud.

None of them

Are easy, but all of them

Are possible. You can do all of these things,

Or just one of them again and again.

You get proud

By practicing.

Power makes you proud, and power

Comes in many fine forms

Supple and rich as butterfly wings.

It is music

when you practice opening your mouth

And liking what you hear

Because it is the sound of your own

True voice.

It is sunlight

When you practice seeing

Strength and beauty in everyone,

Including yourself.

It is dance

when you practice knowing

That what you do

And the way you do it

Is the right way for you

And cannot be called wrong.

All these hold

More power than weapons or money

Or lies.

All these practices bring power, and power

Makes you proud.

You get proud

By practicing.

Remember, you weren’t the one

Who made you ashamed,

But you are the one

Who can make you proud.

Just practice,

Practice until you get proud, and once you are proud,

Keep practicing so you won’t forget.

You get proud

By practicing

Breaking My Routine

The last few months I've been kind of stuck in a rut, doing the same routine over and over every day and not really enjoying my activities. It started when my wheelchair broke and just kind of continued. I wasn't able to go out as many places unless there were two people because of all my emergency equipment and someone having to push my wheelchair. For fall semester I had to drop one class because it would've been difficult to actually go to the school.

Now I need to start getting back into going out places and doing things that I enjoy doing. I'm still getting used to the fact that I am able to drive my own wheelchair now and that I can go wherever I want. Winter weather is here now in Minnesota and the days are getting colder. I'm not saying I can't go outside, but this does make it harder for someone in a wheelchair and on a ventilator to get around. I need some ideas on places I can go and things I can do to make me motivated, because right now I just feel bored.

Jenni

Spring Semester

Well, fall semester is almost over. I'm going to be taking my final exam for my online environmental biology class sometime between December 9-14. I have to schedule a time to take it with the office for students with disabilities at Normandale. This class is been difficult at times, but I've made it this far. I will let you know how I do when I find out.

I signed up for classes to take in the spring. In a post before this fall semester I noted that I had to drop a class that I was signed up for at Normandale. It wouldn't have worked for me to go because of my wheelchair situation. That class was intercultural communications and I signed up for it again at Normandale in the spring. I also signed up for stress management online. I'm excited to start getting out more and actually going to Normandale.

Jenni

Happy Thanksgiving!

Thanksgiving is my favorite holiday, not just for the food but for the meaning behind it also. We hosted it at our house and had about 15 people over; mostly family but some friends too. Our feast consisted of turkey, stuffing, mashed potatoes, rutabagas, sweet potato casserole, green bean casserole (I think that's more of a Minnesotan thing), and crescent rolls. There was also apple, pumpkin and pecan pie. I'm not much of a sweet eater but I did have a small slice of apple pie (my favorite if I had to choose).

I am thankful for many things, but mostly I am thankful to be alive. Something tragic happened in my life and there were many times where I almost didn't make it. I'm not angry or sad that this happened; I'm just glad and thankful that I'm still here. What are you thankful for?

Jenni

A Lesson from the Geese

As each bird flaps its wings, it creates an uplift for the bird following. By flying in a "V" formation, the whole flock adds 71% to the flying range than if each bird flew alone.

Lesson: People who share a common direction and sense of community can get where they are going quicker and easier when they are traveling on the thrust of one another.

Whenever a goose falls out of formation, it suddenly feels the drag and resistance of trying to fly alone, and quickly gets back in formation to take advantage of the "lifting power" of the bird immediately in front.

Lesson: If we have as much sense as a goose, we will stay in formation with those who are headed where we want to go.

When the lead goose gets tired, it rotates back into the formation and another goose flies at point position.

Lesson: It pays to take turns doing the hard tasks and sharing leadership -- interdependent with each other.

The geese in formation honk from behind to encourage those up front to keep up their speed.

Lesson: We need to be sure our honking from behind is encouraging, not something less helpful.

When a goose gets sick or wounded, two geese drop out of formation and follow him down to help and protect it. They stay with it until it is either able to fly again or dies. Then they launch out on their own, with another formation, or catch up with the flock.

Lesson: If we have as much sense as the geese, we'll stand by each other like that.

-Milton Olson

New Wheelchair

My new power wheelchair has been working out great for me. I have been enjoying my independence and am getting used to the sip and puff (prefer the tongue touch more still but it's better than being in a manual wheelchair). Compared to my old power chair, this is definitely an improvement. And I thought that one was great but I didn't know any different. It's from the same company just a new model and more comfortable. It's also roomier because it's 2 inches wider (yes I've grown in the last five years; I was told that comes with age so I shouldn't worry :-). They did switch a couple things from my old wheelchair to my new one, like my armrests and footplate but there are still a couple of other things like a tray that holds my water and a pole to attach my humidifier for my vent.

Here are some pictures of when I took it outside last week to test the speed (this was before the 10 inches of snow we got on Saturday).

The straw attaches to the head rest. The black pad on the other side of my face is a reset switch in case I need to stop the chair immediatly.

A side view

The back of my wheelchair. My vent is hanging on a bar and my oxygen (for emergencies) hangs below.

For now my tubes are tied to the side of the chair.

This is how it looks tilted back.

Invacare TDX SP

Jenni

I'm Still Here

I have been extremely busy the past week with my environmental biology class; paper due tomorrow and quizzes on Saturday. The other day I went outside to see just how fast my wheelchair would go. If set at 100%, it supposedly goes 7 mph! The highest speed set for me is 80%; probably a little over 5 mph. It went way faster than my old chair did. Anyways, I took some pictures and a video that I will put up soon.

Jenni

Standing on My Own…

… two feet. I love getting in the stander, but sometimes it can be really tiring especially when my blood pressure drops. Also, my legs and back hurt if I'm not at 90° because I'm using more energy and muscle to only stand halfway. It's hard for me to even consider that standing, but I guess it is weight-bearing.

On Wednesday I actually got up to 90° for 10 min., which hasn't happened in at least a couple months. (I should note that it took me about 30 to 40 min. to get there, which is normal.) It felt so good to be standing up right, and my blood pressure actually got higher the longer I stood. It started compensating for my standing. However, on Thursday I only got up to 60° in 30 min. time before my blood pressure dropped and I had to go back down to sitting (30°). I guess it depends on the day and my body's ability to adjust. Either way I'm glad I got up to the max at least once.

Jenni

(I will get pictures of my new wheelchair and post them soon! I was also thinking about doing a video of me driving it.)

Remember November 1

Yesterday was a big day. It was the eighth year anniversary of my accident. I can't believe it's been that long already. I've come a long way, and thank God for being alive. I also got my new wheelchair! After five months of being pushed around (pun intended) I'm finally independent again. The rep from Key Medical switched a few things over from my old wheelchair to my new one, but he's coming tomorrow to do more. I took it to Ridgedale Mall today to wear it in a little. I did a great job driving it and didn't run into one thing (well, except for the wall upstairs, but the black marks should come off easy!) I'm going to take pictures of my new wheelchair and post them and also talk more about in my next post. Just thought I'd give a quick update. It turned out to be a great day and one I'll remember!

Jenni

How Do You Lose a Wheelchair?

First off, happy Halloween.

Second, how do you lose a wheelchair?

In a recent post I said that my new wheelchair was supposed to be delivered to Key Medical around the 26th and then brought to me sometime that week. When I hadn't heard anything from them, I called and left a message on Friday. One of the reps that was working on the order called me Saturday morning to give me the news. She said that they ordered the wheelchair two weeks ago and it was scheduled to come in Monday. After a couple days and no wheelchair, she called Invacare, the company we ordered it from, to track it. They said that there was no record of the chair being ordered, which was odd because she remembered ordering it and had the tracking number. After a while of digging around, they figured out that the chair was sitting in some warehouse in Ohio. Somehow it had gotten shipped wrong, someone didn't know what to do with it, left it in the warehouse, and changed the tracking number. That's why it couldn't be traced.

Needless to say, it made its way to Key Medical and they're going to bring it over within the next week. I'm definitely looking forward to being in control and independent again. The last four or five months have been hard on me, and it will be nice to be in control and have independently again. I'm definitely looking forward, not back. Let's just hope nothing else happens and that it's a smooth transition into my new wheelchair.

Jenni

Volunteering

I signed up to be a volunteer at Gillette Children's Lifetime clinic a while ago. It's not the same as the hospital (Gillette Children's Specialty Healthcare) but it's where people go when they grow out of pediatrics but still want to continue with Gillette. I became a volunteer to help work with patients in occupational therapy using the speech recognition software Dragon NaturallySpeaking. They actually made a position for me because there wasn't one for that specific of a job.

I've been using Dragon for over seven years, so I know pretty much everything there is to know about it. The whole idea started when I was at an OT appointment at the clinic. I was telling them that I used Dragon with my computer and that I used to help train other people at a previous summer job working with the school district. They thought that was neat and told me that they have some patients who struggle with it. That's when they decided to make a position for me to volunteer.

I went through all the process to become a volunteer; filled out all the paperwork, went into the doctor and got a Manto test (for tuberculosis), received an ID badge with my picture on it. The funny thing is they haven't called me to work with anybody volunteering and it's been almost 2 months since I became a volunteer there. I've called them and left messages but they haven't called me back. When I talked to the volunteer coordinator she said they have to set an appointment up with a patient first. I suppose it makes sense but you would think they would've tried to get in touch with me somehow before hand.

I've been a volunteer before at the hospital. I worked with kids in outpatient and in the waiting room doing arts and crafts. It was fun, but a little challenging since I had to have my nurse show the kids how to do everything. I did get to interact with them which was fun. That was just for one summer back in 2007.

Definitely I should try to call again to see what's going on because I'm really excited to volunteer; especially since I haven't really been going many places due to my wheelchair situation. Hopefully soon.

Jenni

Another year…

Well, I should say happy birthday to me because yesterday I turned 24. I did homework for most of the day and then one of my friends came in the evening to hang out. On Sunday I'm going out to lunch for my birthday with a bunch my friends to Benihana. I went there last year for my birthday with my mom and sister. It's one of my favorite restaurants.

I have an update on my wheelchair. It was ordered on October 8 and will be in on the 26th, which is next Tuesday. By the end of the week, key medical will bring the wheelchair over and spend the day making adjustments and switching stuff from my old wheelchair onto it. After that I'll be able to freely and independently move my new wheelchair! It's been over four months since my power chair broke and I'm very anxious to have everything back to normal.

Jenni

My Braces

I have many different braces that I use throughout the day and night. They are mainly for stability and to keep me aligned, or in the right position. The braces that I wear most often are my AFO's (ankle foot orthotics); I have three pairs. They help prevent foot drop.

This is how my foot usually is, in a dropped position. The AFO's help stretch my foot out to a 90° angle. The socks on my feet are called Ted socks. I have ones that go all the way up to my thigh that I wear during the day and ones that just go up to my knees that I wear at night. They help with blood circulation.

I wear these AFO's during the day when I'm up in my wheelchair.

I wear these braces at night when I'm sleeping. They are padded to keep me from getting pressure sores on my feet when I lay on them.

These are called dynamic AFO's. They have straps on the sides to adjust the foot part more than 90° to give me a bigger stretch. I wear these twice a day (in my wheelchair) for one hour at a time.

These are called WHO's (wrist hand orthotics). I wear them at night when I'm sleeping to keep my hands stretched.

These are my elbow braces that I wear at night when I'm sleeping to keep my elbows straight.

I also wear a back brace during the day to keep my trunk supported and my spine from curving. It is very comfortable for me and I don't feel right when I don't have it on. I wear it over my T-shirt and under my sweater so it doesn't show. You'll rarely see me wearing just a T-shirt unless I'm outside when it's hot. I just prefer to have the brace covered. I also wear fuzzy socks over my AFO's so you can't see my feet. I don't know of any pair of shoes that would fit over them, unless they were specially made. However then I would probably look like I had clown shoes on.

Jenni

Inspirational Poem

Always Believe

You have the ability

to attain whatever you seek;

within you is every potential

you can imagine.

Always aim higher than

you believe you can reach.

So often, you'll discover

that when your talents

are set free

by your imagination,

you can achieve any goal.

If people offer their

help or wisdom

as you go through life,

accept it gratefully.

You can learn much from those

who have gone before you.

But never be afraid or hesitant

to step off the accepted path

and head off in your own direction

if your heart tells you

that it's the right way for you.

Always believe that you will

ultimately succeed

at whatever you do,

and never forget the value

of persistence, discipline,

and determination.

You are meant to be

whatever you dream

of becoming.

Always Believe in Yourself

Get to know yourself -

what you can do

and what you cannot do -

for only you can make your

life happy

Believe that by working

learning and achieving

you can reach your goals

and be successful

Believe in your own creativity

as a means of expressing

your true feelings

Believe in appreciating life

Be sure to have fun every day

and to enjoy

the beauty in the world

Believe in love

Love your friends

your family

yourself

and your life

Believe in your dreams

and your dreams can become

a reality

Click here to read more inspirational poems.

10.10.10

It is autumn in Minnesota and the weather is unusually warm. Today the temperature was close to 80°F and yesterday it was at least 85°F. On this day last year we had our first snowfall. Crazy isn't it, how the weather can change so quickly and be so different from year to year.

I was outside Thursday and took pictures of our backyard. Yesterday and today I went out to enjoy the weather. The leaves are beautiful shades of orange and red now, and many have fallen to the ground. My sister is enjoying palm trees in California; I think she's missing out. She left Thursday to be in AmeriCorps for 10 months. I'm missing her already, even though it's only been a few days. I know she's having a good time though and will be a great service to others.

Jenni

My Big Adventure

For my environmental biology class one of the assignments due is a community study. It involves going out into the community to a park or reserve and identifying the different species involved, or explain why I believe they are present in the community. My species list is to include at least 20 species which could include woody plants, mammals, birds, reptiles and amphibians. Herbaceous plants and invertebrates can be listed using the most appropriate name/term that can be employed, in conjunction with a brief description (eg., Red and black beetle).

On Monday I went to Theodore Wirth Parkway to do my study. I met with, Michelle, our class advisory. When I first got there, we started looking at plants on the side of the road. I wanted to go deep into the forest and search high and low, but Michelle said it wasn't accessible. I said I wanted to try anyways, which she was hesitant but said okay. I had to hop a curb to get onto the unpaved path. It was bumpy and there were lots of hills and it was hard for my nurse to push me.

We stopped when we got to the nature center to look around. I saw lots of different species of plants and animals. Michelle had a field guide that we could look at to identify things. We decided to go forward instead of back thinking the train would be better. We were wrong. There were even more hills and at one point I was rolling pretty fast down one and it had me scared. Then we thought we had a dead-end when we came up to a huge, muddy puddle across the path. I ended up having to go around almost into the woods after Michelle piled leaves over the water and mud. After a couple of hours of trekking through the forest, we finally made it out.

Needless to say we had a big but great adventure, and I learned some things as well. Next time I'll choose somewhere that has a paved path and is handicapped accessible. Either that or it won't be so bold.

Jenni

Regulating Body Temperature

Many people with spinal cord injuries, as a result, have trouble regulating their body temperature. Here's what it says about it on Apparelyzed.com

"A normal, healthy human is able to maintain a constant body temperature &of approximately 98.6F despite the temperature of the environment. In a hot environment, the body sends a signal to the brain via the spinal cord to say the body is overheating, the brain then sends a signal back down the spinal cord and tells the body to cool itself by perspiration which evaporates and cools the skin. In cold weather, the body senses the lower temperature and our brain tells us to put more clothes on to warm ourselves up.

Most people with complete spinal cord injuries do not sweat below the level of the injury and many quadriplegics cannot even sweat above the injury (even though they may sweat due to autonomic dysreflexia). With loss of the ability to sweat or vasoconstrict within affected dermatomes the patient becomes poikilothermic and needs careful control of their environmental conditions. Therefore, if a high paraplegic or quadriplegic is in an outside temperature over 90 F, especially when the humidity is high, the body temperature will begin to rise (Poikilothermia). Likewise in a cold environment, the body may not be able to get the messages through to the brain that the body is cooling down, and if left untreated, the person will soon become hypothermic."

My body used to have a hard time regulating its temperature. When the environment around me was cold, I would be cold; when it was warm, I would be warm.

One time, about six or seven years ago, I was just watching TV out in the living room. My mom came up to me and touched me and found that I was freezing cold. I took my temperature and it was just below 92°F. I was shocked because I couldn't tell that I was that cold. They heated up towels and blankets and piled them on me to try to warm me up. It took quite a while but I finally warmed up. It was a very scary experience because my temperature was very low.

Despite my past, I don't have problems with regulating my body temperature anymore; it is usually stable at or around 97.6°F. I also sweat below and above my injury, which is one reason I believe that my spinal cord is incomplete. These are definitely good things. I couldn't imagine having to worry about my temperature dropping or rising so suddenly and unexpectedly.

Jenni

Updates

I got a call from Key Medica today. They had good news. My request for my wheelchair has gone into pricing, which means that it's been approved by medical assistance. Now all they have to do is figure out how much they're going to pay for it (which usually is the whole thing) and then I can start the ordering process. I'm not sure but I think it takes about 2 to 3 weeks to come. Exciting! Hopefully I'll have it by my birthday October 19. That would be the best birthday present ever.

I'm still taking my online environmental biology class. It is really difficult, especially because there are so many terms and lots of information to remember. I think I'm doing good so far and I'm going to stick with it even with everything else going on. This spring I'll be able to take a class at Normandale with my new wheelchair. It's been really hard not getting out of the house very often, so I'm looking forward to the next chapter.

Jenni

Leaving for A While...

My sister, Kristen, applied for AmeriCorps last year in the spring. After a long process, she found out a couple months ago that she was accepted. According to their website, "AmeriCorps NCCC (National Civilian Community Corps) is a full-time, team-based residential program for men and women age 18–24. Members are assigned to one of five campuses, located in Denver, Colorado; Sacramento, California; Perry Point, Maryland; Vicksburg, Mississippi; and Vinton, Iowa.

The mission of AmeriCorps NCCC is to strengthen communities and develop leaders through direct, team-based national and community service. In partnership with non-profits—secular and faith based, local municipalities, state governments, federal government, national or state parks, Indian Tribes and schools members complete service projects throughout the region they are assigned."

She is assigned to the campus in Sacramento, California and will be leaving October 7 for 10 months. I am very excited and happy for her and I think it's a great opportunity. Although I will be sad to see her go; 10 Months is a long time. She'll get to come home and visit during Christmas break, which will be nice.

Kristen will be keeping a blog of her experience. You can visit it and keep track by clicking here.

Jenni

"The best way to find yourself is to lose yourself in the service of others."
-Gandhi

Others View

Other people's view may be distorted or untrue if they pass judgment on me by my looks. Some people only see me as a person with a disability. Maybe they look at me and wonder what happened or ask themselves how something like this could happen. Many people look at me and see my disability, my wheelchair, my ventilator etc. and they don't often stop to think about me as a person and the abilities that I do have. They stare at the disability versus looking at the person inside.

There people who just see me out and about and turn their head to take a peek. I believe it's curiosity of the unknown. They probably just want answers on what happened. Even though I don't like it, I think I'm starting to get used to all of the looks and stares that I receive. Maybe I'm just becoming immune to it, because I don't notice it as much anymore. I know not everyone does this but if I do notice someone staring, I simply give them a smile. It lets them know that I am a person beyond my disability.

I have many friends with disabilities who feel the same way. It's like a common thing that always comes up in conversation. Probably because it happens so frequently. It's part of our everyday life. I think it happens to many people who look "different" from the rest. Sometimes I want to put a sticker on my forehead when I go out that says "I was in a car accident", just to clear things up.

Jenni

Easystand Blog

Jackie, someone who writes for the Easystand blog, contacted me via e-mail asking if I wanted to do another guest post on their blog. (Here's a link to the one I did in 2008). She suggested that I repost the one I did on my blog about standing with the cats a while back. She made the post live on their blog today. Click here to visit it. I'm going to be doing more guest posts in the future.

Jenni

Getting Cooler

The weather is getting cooler and soon Minnesota will be entering fall season. The leaves on the trees will start to turn beautiful shades of yellow, orange and red; they will then die and make their way down to the ground where they will lay dormant throughout winter.

Lately, I've just been following pretty much the same routine day in and day out. I get all my cares done in the morning and then get out of bed into one of two wheelchairs (manual one if I'm going out somewhere and old power wheelchair if I'm staying home). When I stay home I go out into the other room and usually watch one TV show while I eat lunch, do stretches on my arms, and.cath. Then usually around noon I read some of my textbook for my class. After that I go on the computer for most of the rest of the afternoon.

On the computer I read and write discussion posts for my class, look at my Facebook, check my blog for comments and add to future posts and check my e-mail. Occasionally I'll chat with someone on Skype or Facebook in between all this. The reason I go on the computer for so long is because I can exhibit independence (something I've lost with my wheelchair). Using speech recognition software, I can navigate through whatever programs that I want all by myself. This is also usually when I get the most alone time during the day.

It's been really tough without a working power wheelchair. I feel myself getting bored more easily and sometimes a little depressed. It is more difficult to get outside and go out places. I miss going to school instead of just doing it online and hope that soon things will be back the way they used to be. However, with the weather changing soon it will be even more difficult to go outside, even when I get my new power wheelchair. Hopefully something exciting in my life will come along soon.

Jenni

"Leave yesterday behind. Let hope guide you to a sunny new tomorrow."

Word on My Wheelchair

For those of you following my wheelchair situation, here's an update.

Right now I'm just waiting on the order and letter of medical necessity from my doctor; I already received one from my physical therapist. Once it comes through, then Key Medical can submit those letters and the tentative order to my insurance company. As soon as they deny it (we already know they will because I have capped out on my medical equipment), then it can be submitted to Medical Assistance (M.A.).

M.A. has 30 days to either accept or deny it. If they accept it, then they can order it and it should take about two weeks after that. If they deny it, we can resubmit it but then M.A. has another 30 days. If they keep denying it, which is unlikely, then we can try to fight it. Hopefully, M.A. will accept it right away and then the ordering process can begin. That would be the ideal situation.

Another month or so doesn't seem quite that long, considering the length of time I've already been waiting. I think I've been through enough this summer and I'm ready for things to start going my way and to be back to as close to normal as possible.

Jenni

In My Dreams

Question: Do you ever have dreams in which you are not paralyzed?

Answer: Yes.

That's a good question. I often have dreams where I am either paralyzed or not or partially paralyzed. Sometimes I'm paralyzed in the beginning of the dream and not in the end and vice versa. A lot of times I'm shopping in my dreams. Not quite sure what that means; I don't shop that often. But usually in these dreams I'm not paralyzed and I'm picking out clothes or walking around the mall finding something to eat. I guess this is what I dream about most often.

My mom has had a continuous dream of me walking on a beach in hiking boots with a backpack ventilator strapped to me. She's also had dreams where I've been walking and my tubes are attached to my trach but the end of them are free flowing in the wind and aren't attached to anything.

I'm not exactly sure what dreams mean. I know there are many books and things online to help you decode your dreams, but I don't know what to believe. It's just interesting when I wake up and feel like the dream I just had actually happened. They can be so real yet so bizarre.

Recently, I had a dream where I was becoming a man, but I won't get too detailed with that one. That was weird. It would be interesting if what people dreamed actually became reality. I think life for everyone would be pretty strange, including me.

What do you dream about?

Jenni

Just Another Week

On August 23 I started my online class. So far I've had to read and do a few discussion posts along with taking a trial quiz. It's going to be a lot of work and a lot of things to remember like terms and stuff. I miss actually going to Normandale, but I'm kind of glad that I'm only taking one class instead of the two because it would've been a lot of work to take both. (I mentioned this before, but I had to drop the one at Normandale because of my wheelchair situation.)

I've been getting out of the house a couple times a week. Sunday we went to church and today we went out to lunch. It's still difficult to go out with more than one person because of all my equipment. Yesterday I went outside in my backyard and had my nurse take like 40 of pictures of me in the sun. I know, a little excessive but I was having fun. I put a couple of them below. Let me know what you think; I was trying to do modeling poses although I'm not sure if I succeeded. The ones above are of my backyard.



Jenni

The Builder

Builder, The -author unknown

An elderly carpenter was ready to retire. He told his employer-contractor of his plans to leave the house building business and live a more leisurely life with his wife enjoying his extended family. He would miss the paycheck, but he needed to retire. They could get by.

The contractor was sorry to see his good worker go and asked if he could build just one more house as a personal favor. The carpenter said yes, but in time it was easy to see that his heart was not in his work. He resorted to shoddy workmanship and used inferior materials. It was an unfortunate way to end his career.

When the carpenter finished his work and the builder came to inspect the house, the contractor handed the front-door key to the carpenter. "This is your house," he said, "my gift to you."

What a shock! What a shame! If he had only known he was building his own house, he would have done it all so differently. Now he had to live in the home he had built none too well.

So it is with us. We build our lives in a distracted way, reacting rather than acting, willing to put up less than the best. At important points we do not give the job our best effort. Then with a shock we look at the situation we have created and find that we are now living in the house we have built. If we had realized, we would have done it differently.

Think of yourself as the carpenter. Think about your house. Each day you hammer a nail, place a board, or erect a wall. Build wisely. It is the only life you will ever build. Even if you live it for only one day more, that day deserves to be lived graciously and with dignity. The plaque on the wall says, "Life is a do-it-yourself project."

Who could say it more clearly? Your life today is the result of your attitudes and choices in the past. Your life tomorrow will be the result of your attitudes and the choices you make today.

Carbon Footprint

Now that I'm taking an environmental biology class, I know I'm going to start becoming more cautious about things; like what gets used and thrown away, leaving lights and appliances on etc. I am extremely influenced by books and classes about things and ideas like this. I remember when I took a principles of nutrition class a couple of years ago. It completely changed the way I thought about food and what I ate.

Most people wouldn't believe the amount of supplies and necessary household items that someone like me with a team of eight nurses and two PCAs goes through on average. I try my hardest to make sure we do what we can to minimize our use and waste. In the last four months, we switched to using hand towels for drying instead of paper towels. That made a huge difference. We were going through like 30 rolls every couple months. Some people were reluctant because of infection control, but I worry about how much waste we were producing.

Does anyone else think about their carbon footprint and what they leave behind for the rest of the world?

Jenni

Wheelchair Trial

On Friday Key Medical brought out two wheelchairs for me to trial. One of them had a chin joystick and the other had a sip and puff. After getting so frustrated a few weeks ago when I tried the sip and puff and couldn't get it, I decided I wanted to try the chin joystick to see if I would like it. They brought out both ways to drive it so that I could compare the two and figure out which one I wanted to use to drive my new wheelchair.

I tried the chin joystick first. It's just like a regular joystick for a wheelchair; you push it forward to go forward, back to go back and so on. You have to keep pressure on it the whole time otherwise if you let go the chair stops. That means it's in an unlatched mode. As soon as I started I got it down right away. It was really easy. I was able to navigate through the door outside, down the sidewalk and around the driveway to the side of the house. I practiced for about 20 minutes; trying to learn everything I could about it.

After trialing that chair, I transferred into the chair with the sip and puff. I was a little hesitant at first since I had so much trouble with the last time, but I kept an open mind because I didn't want to give up on it. To my amazement, it took about two minutes for me to get it. Just like the chin joystick I was out into the side of the house in no time.

The sip and puff is also known as a breath control, although you don't actually use your breath to control it. You use pressure to puff into it and sip, just like you would a straw. Depending on what you do depends on which way you move. After trialing both I decided that I liked the S&P better. The major reason why is because like I said before with the chin joystick you have to keep constant pressure on it. When using the S&P, it can be set in a latched mode so you can give it a hard puff to go forward and it will just go. It can also be set on an unlatched mode where you have to continuously puff into it to get it to move, but after a while that gets really tiring and my cheeks would hurt. It was a good thing that they brought out both chairs and gave me the choice between two options instead of just one.

They let me keep the power wheelchair with the sip and puff to trial until this Friday. There's just one problem with this chair and that's that it's too small for me and extremely uncomfortable. I lean to the side because there is no support. I've used it Friday, Saturday and Sunday so far. Today I went into my old power wheelchair (the one that doesn't work) to give my body a break and some support.

Tomorrow I have a doctors appointment at Gillette to get Botox injections in my neck and shoulders again. I'm going to use the trial chair to go there because I want to see how I do with it out in public. I'm kind of nervous right now because if something happens with the chair I'll be stuck out somewhere. It should be okay though because the guy from the company is going to meet me out there to help if I need anything, which is really good. After tomorrow I don't think I'll get in it again because it causes me too much pain.

I should be able to get my new wheelchair ordered by the end of the week. I have to make a few decisions still before that can happen. I'm not sure yet as far as the timeperiod on when I'm going to get it. The wheelchair has to be approved by medical assistance first, and that could take a couple months. I will keep you updated as I know more.

Jenni

Stories from the Past

When my accident happened, I was 16 and a sophomore in high school. I was taking three classes (biology, math, and English) and had a study hall. In the hospital, I finished my math and English classes with the teacher that was there. It was funny because someone would bring me my math homework, and then I would not only have to learn how to do it myself but I had to teach the teacher how to use the graphing calculator in order to do the problems. English was a little easier to do because it just involved reading and analysis. I couldn't finish my biology class in the hospital because there were labs so I had to retake that one. I didn't do any more classes the rest of my sophomore year; I just focused on recovering.

I went back my junior year and ended up finishing all my required credits. I graduated on time with my class in 2005. I posted a couple of pictures from the past below.

This is my senior picture.



This is a picture of me at graduation.



This is my graduating class of 750.



Jenni

Signature Stamps

Usually when I sign things I do it with my mouth (the same way that I paint). I'm pretty good at writing capital letters if I use a Sharpe marker. I'm unable to write stuff with a pen or pencil because I would have to put a lot of pressure on the paper to get it to write. I decided a while ago that I wanted a signature stamp so that I wouldn't have to pull out the Sharpe and an alcoholic wipe every time I had to sign something.

About two weeks ago I went to Office Depot to have one made. I signed my name and then they made it right there while I waited. I could've used an old signature from before my accident, but I wanted it to be something that I could still write now just in case. I think they turned out really good. Definitely easier than signing myself. I got one that says my name and one with my initials.

Jenni

Much Appreciation

I appreciate everyone's support and help throughout my journey and the rough times. I know things will be okay and that everything I am going through now is just another bump in the road. There are smoother paths to come. It's not often that I share feelings with others; especially if they're deep and are affecting the way I go about my day. Sometimes I treat this blog as sort of a diary. It's not always easy to talk to someone face-to-face but it's definitely easy to talk to a computer screen. As long as I don't think about the fact that tons of people are reading my writing, I can get out a lot which is good for me. Not sure that it's always something others want to read but it's a helpful tool for me to get things off my mind. I know occasionally I help others as well who are going through similar situations with my honesty.

Thanks for reading.

Jenni

"A hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles."
-- Christopher Reeve

Yeah, It's Hard

I have trouble sometimes dealing with this whole situation. There are times where all I do is direct and tell people what to do. In fact that's my life. I didn't sign up to be a manager of others starting at 16 years old. Sometimes trying my best doesn't seem good enough to me. I think I'm my own worst critic.

You know how there are those days when you wake up in the morning and you just don't feel like getting out of bed. Maybe you have a long day ahead of you, or your tired, maybe you're being lazy, or you stayed up late the night before, or maybe you just don't want to face the day. Whatever the case may be, the sheer determination just isn't there.

It's very difficult for someone like me to choose to get out of bed every morning. If I wanted to, I could just say the heck with it. Why get out of bed into my wheelchair, wheel out into the other room, and do the same things that I could have done sitting in bed in my room? It doesn't always seem worth it. Especially now that the wheelchair I'm in is extremely uncomfortable. It takes a lot for me to say yes when my nurse asks me if I'm ready to get up.

One thing I think about is the fact that there are many people who can't get out of bed, who don't have that choice. This is something that motivates me to say yes; I would definitely struggle more with not having the option of getting up at all. No matter how challenging my situation is, I still manage to live every day to the fullest.

Jenni

Happy Birthday Sis!

Today is my sister, Kristen's, 21st birthday. We are going out to lunch tomorrow to celebrate. Yesterday I went to the mall to get a present for her. Only she ended up meeting us there and trying on the clothes I was getting for her. Good thing actually because I had the wrong sizes picked out.

Sunday I went to church for the first time in over a month. It felt good to get out and go there. I'm really glad that I was able to be there because they did a skit that was amazing and made me tear up. It was to the song Everything by Lifehouse. I found a video on YouTube that is very similar to the skit that they did. It was definitely better and more emotional in person, but this suits it very well. Click here to watch it.

Jenni

The Topic of My Life Right Now

All I have to talk about lately is my wheelchair. I can't think of anything else to post on my blog because this is all that's been on my mind. It's a big part of how I do things and what I do. It's been a struggle these last couple months. Going out places has proven to be a big challenge. Since I'm in a manual wheelchair and I have so much emergency equipment, it is difficult for the nurse to carry all of that and push me at the same time. It now takes two people to go out places.

I have already trialed the sip and puff and heard today that I can trial the chin joystick by early next week. Hopefully then I'll be able to decide which way I want to drive my new wheelchair. The ordering process should begin after I have made a decision. After that I'm not sure how long it's going to take before I get a new wheelchair; maybe 1 to 3 months. Medical assistance has to approve it first.

Jenni

" A hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles."
-- Christopher Reeve

Try This

Painting Again

Now that I have some free time, I've been painting again. It makes me so happy to be doing what I love. I tried a new technique as well as one I've done before. Check out the pictures below and tell me what you think.


I found this new technique involving plastic wrap on the Internet. For this painting I put a wash of two colors down and then while it was still wet had someone lay plastic wrap on top of it. Then I told them which spots to scrunch together. After letting it dry overnight, the plastic wrap was removed and this is how it turned out.


I did the same thing with this painting only I used three colors. It kind of turned out to look like some sort of scenery with water and a sunset. That was unintentional. What do you think it looks like?


I've done this technique involving leaves before. First the paper was fully wet. Then I painted color onto the tops of the leaves and turn them over pressing them firmly on the paper. While it was still wet, I painted the background. Then I let it dry overnight.


When it was completely dry, I pulled the leaves off one by one to reveal the pattern and color underneath. This is how it turned out.

The most exciting part of doing these paintings is having to wait till the next day to reveal them. I am really proud of every painting that I do. It's fun to learn new techniques and to show them off to others. I hope you enjoy looking at them too!

Jenni

Getting Independence Back

The most valuable thing to me to have in my current situation is independence. It is something that is extremely hard to get once you've lost, so when things come along that can help that I hold onto them. When I finally get it back and then lose it again, it can be frustrating and saddening. Losing the ability to drive my wheelchair myself has been extremely tough. Right now I'm in the process of trying to figure out which way I'd like to use to drive a new power wheelchair.

On Tuesday Key Medical brought me a power wheelchair with a sip and puff to trial. After telling me how to use it, I tried it out for the first time in my room. It was not at all like I expected; harder actually. I tried it for a little while, got tired and sore cheeks, and was extremely frustrated that it wasn't going my way. It would have been easier to try it outside or something in a bigger space, but it was extremely hot and humid outside. At first they said that they were going to take it back with them when they left. I said no because there's no way I can know after an hour if it's going to work or not or if I like it. I was able to keep it until this morning at around 10 AM. I'm extremely surprised that they wouldn't do a longer trial period.

Yesterday I took it outside to mess around with it. After a while, I started getting the hang of it but was still frustrated. I know it takes a while to get used to something and learn it, but I just felt like no matter how long I tried it, I was never going to get it. I want to say that I loved it and that that's what I want to use, but I am unable to. Without something else (besides the tongue touch) to compare it to, I just don't know if it would work out for me to use. So I talked to them today and they are now going to try to get a wheelchair with a chin joystick for me to try; although I'm not quite sure how long that will take.

After I choose which of the two ways I want to use to drive my wheelchair, then they can begin the process of ordering it. It will probably take a couple of months before medical assistance will approve to pay for the chair. Only after we go through this entire process can I begin to get my independence back. I'm hoping and praying that everything works out okay and then it can be as quick of a process as possible.

Jenni

Good Things Do Come

I found out I received a 93% (A) in my online mass communications class that I just finished up. Definitely better than I thought I was getting. I'm really proud of myself for sticking with it and not giving up. For fall semester, I signed up for intercultural communications at Normandale and environmental biology online. It's going to be interesting taking two classes; I have a feeling it will be a lot of work again. Hopefully I'll be able to handle it.

I got word from Key Medical on Friday. They're going to bring out a loaner power chair on Tuesday for me to try. It's going to have a sip and puff on it. I'm not sure how long the trial period is for; hopefully until I can get a new one. I'm so excited to get out of this manual wheelchair and get a little independence back. Now I just have to learn how to use it. Wish me luck!

Jenni

"There are two big forces at work, external and internal. We have very little control over external forces such as tornadoes, earthquakes, floods, disasters, illness and pain. What really matters is the internal force. How do I respond to those disasters? Over that I have complete control."
-Leo Buscaglia

A Poem That Fits

Determined I Shall Be

Keeping myself optimistic
Each day begins anew
Looking on the bright side
That's what I had to do

Erasing negative thoughts
So doubts will disappear
In knowing I have patience
I continued to persevere

Persistence always helps
In using determination
I'm never one for giving up
Whatever the situation

In believing all is possible
That is so true of me
Everyday I remind myself
Determined I shall be
-Hope

This poem relates to how I'm feeling now with everything going on. I am determined to stay positive and believe that everything will be okay. In this current situation, it can be easy to get depressed. I'm not going to give up.

Jenni

Rest in Peace Ty

So I have some bad news. My cat Ty got outside on Friday and then went missing for a couple of days. That's unusual for him to be gone that long. We searched and searched but couldn't find him. Finally Sunday evening one of my nurses was driving home from her shift and spotted him on the side of the road not too far from my house. We're not quite sure how he died but we think an animal got him. There are coyotes and foxes in the woods behind our house. Plus owls and hawks fly around at night.

It's really unfortunate though, he was a great cat. There will never be another one quite like him. He had such a personality and was so friendly. When we would talk to him he would meow back and he would lay down and bow his head for a treat. He would greet people at the door hoping to narrowly escape to the outside. It was hard to keep him inside because he loved to be out. He would roll around on the driveway and get all dirty, and then he would lie in the grass keeping watch. Even though he didn't have any front claws he was an excellent mouse catcher. Sometimes he would just play with them and other times he would bring them to the door as presents. We're really going to miss Ty.

Has anyone else lost any pets close to them?

Jenni

Yay for Me

I'm finished! I know I've talked a lot about this class, but that's only because it was extremely difficult for me. I just submitted my final exam and am now officially done with it. I feel very relieved and excited to have finished because there were many times along the way where I felt like quitting and just dropping the class.

This morning I had physical therapy. She flipped me onto my stomach (in the prone position) and worked on relaxing my back muscles. I have a massage table that I bought so that I can go prone whenever I need to. My massage therapist flips me over too when he comes once a week. Before my accident I used to always sleep on my stomach, so it's my favorite position to be in.

Tomorrow I'm hopefully going to go to Target so I can pick up some well needed items. Then I'm going to enjoy my day and read for fun. That sounds good to me.

There will definitely be better posts to come now that I have some time.

Jenni