Saturday, January 30, 2010

The Birth of a Candy Bar

I know my blog is G. rated, but I just had to post this. I got it in an e-mail from my grandpa. Too funny!


Wednesday, January 27, 2010

Questions and Control

Are you cold? Do you want a blanket? Are you hungry? Do you want something to eat? Are you thirsty? Do you want some water? Are you comfortable? Do you have any pain? These are just some of the many questions that I get asked by my nurses on a day-to-day basis.

Sometimes I feel like they don't trust that I'll say if I feel or need something, but I know that they're just doing their job; trying to make me happy and as comfortable as possible. It does get annoying though to constantly be asked questions all day. It also makes me feel like I'm not in control. Almost like I'm giving something up by answering yes or no instead of asking myself.

Maybe that sounds strange but one of the reasons is because I rely so heavily on others to do things for me, that I try to hold on to every bit of control possible. By directing my cares, telling people what I want done, when I want it and how to do it makes me feel some sort of peace in knowing that I am the one running the ship. That people aren't just doing stuff to me or for me without me asking first.

I know all of these feelings are completely normal, especially for someone who's lost so much. I try to make sure that I'm not being offensive when telling someone that I'll let them know when I need something. They are just doing what they are here to do, and that is work for me.


Monday, January 25, 2010


My tongue touches came today! I'm at home now but later I'm going to Target so I have an excuse to use them. It's been over a month since I've been able to drive my wheelchair myself. I need all the independence I can get, so it's been a struggle for me. Every day I'd been checking the mail to see if they'd come. Every day I was let down once again. It was kind of funny because today I had my mom check the mail and when she came down she shook her head no. This time it didn't even phase me. I was so used to that answer that I had no reaction at all. Then she brought them over and I got all excited. Hopefully now I won't have to write any more about my wheelchair.


Saturday, January 23, 2010


Still no word on my tongue touch. Hopefully by next week I will be up and running again. At least my nurses aren't bad drivers, otherwise I would be stuck.

The other day I had an appointment with the urologist. I have to see him annually for a checkup. I've had bladder stones in the past, so they needed to make sure that I didn't develop another one. A couple of weeks ago they did an ultrasound on my bladder and kidneys to see. When I saw the doctor, he said everything was clear. That was a relief. I didn't want to have to go through another surgery.

I've been pretty laid back today. Just watching TV, reading, sleeping, going on my computer, and now about to play the game Scrabble. Sometimes we all have to have days like this to give our body and mind a break from all the crazy things going on in life. It definitely works for me.


Wednesday, January 20, 2010

Talking It out

I had an appointment with my psychologist today. I haven't been to see her in a few months. A long time ago I was going every week. I think I'm doing well enough that I don't need to go as often. It's nice to have someone to talk to though; especially someone who will just listen and not try to fix whatever is wrong. Even if there isn't a problem going on, it's nice to just let it all out and work through any thoughts that I have.

I think my blog helps with this too. I feel very free to say whatever I am thinking and going through. Maybe it's because I'm talking to a computer, and don't really think about the fact that thousands of people around the world are reading it. Or maybe it's because I know that what I have to say may help someone. Whatever the reason, it's also a form of therapy for me.


Saturday, January 16, 2010

Good Poem

I Will Be Worthy of It

I may not reach the heights I seek,
My untried strength may fail me;
Or, half-way up the mountain peak
Fierce tempests may assail me.
But though that place I never gain,
Herein lies comfort for my pain-
I will be worthy of it.

I may not triumph in success,
Despite my earnest labor;
I may not grasp results that bless
The efforts of my neighbor.
But though my goal I never see
This thought shall always go with me-
I will be worthy of it.

The golden glory of Love's light
May never fall on my way;
My path may always lead through night,
Like some deserted by-way.
But though life's dearest joy I miss
There lies a nameless strength in this-
I will be worthy of it.

-Ella Wheeler Wilcox

Thursday, January 14, 2010

Loss of The Controls

For the last couple of weeks I haven't been able to drive my wheelchair with my Tongue Touch. The battery in one of them went out right before Thanksgiving so I was using the second one. Then that battery went out just before New Year's, so now I'm stuck without anything to drive my wheelchair. The nurses have been using the joystick on the back of my chair to drive me. This happened a couple of times before. The problem is that I had to send them all the way to California to get the battery changed. I'm not sure what's going on as far as why they haven't fixed them and sent them back by now. Usually it doesn't take this long.

It's just frustrating not to have the ability to drive myself. I only have so much independence and when it gets taken away, it's really tough. It's hard not be able to park myself where I want to be and to rely on other people to always drive me around. I already rely on them for so much else. I just found out last night that I'm not the only one in this situation. There's someone else who is without both tongue touches as well and is relying on others. This makes me even more frustrated. I really do like the Tongue Touch Keypad when it works and I think it's a great concept, however when things like this happen it makes me want to try different options for driving my wheelchair.


Tuesday, January 12, 2010

First Day of Class

Today was the first day of my Psychology of Religion class. I think I'm going to enjoy it. My teacher is awesome; he is very laid back and personable. The class itself is very interesting and will challenge me to think and ponder on questions that I wouldn't normally. I'll let you know more about it once I have more classes.

If you remember from my last post about my classes, I had said that I signed up for mass communications online. I decided to drop that class because I felt like the workload would be too much at this time. I'm probably going to take it online during summer session by itself, without any other classes.


Saturday, January 9, 2010

Update on Sleeping

Thanks to the increased dosage on my sleeping medication, I've had the best week's sleep. I've been averaging about 5 to 6 hours, which is twice as much as I was getting before. The anxiety is completely gone, and I feel great. Now I actually look forward to going to sleep. I do take naps during the day, which keep me energized. Hopefully I won't have any more problems with sleep; it's the worst thing to try to fix.


Thursday, January 7, 2010

156 Countries Sing Together

I saw this video and just had to post it.

"On December 7th, 2009 at 1:30pm GMT Starbucks invited musicians from all over the world to sing together at the same time to raise awareness for AIDS in Africa. In that one breathtaking moment, musicians from 156 countries played "All You Need is Love" together. Watch now, as musicians from all around the world come together and share a song."

"Join in by lending your own voice to Watch streaming video from countries around the world and then join in by singing All You Need is Love yourself. For each video submitted, Starbucks will make a contribution to the Global Fund to help fight against AIDS in Africa. You can also help increase the Starbucks contribution to the Global Fund by submitting a drawing to the Love Gallery.

The global sing-along is part of our continuing efforts to help fight AIDS in Africa. In just one year in partnership with (RED)™, Starbucks has generated money equivalent to more than 7 million days of medicine to help those living with HIV in Africa."


Wednesday, January 6, 2010

20 K.

Wow! I've reached 20,000 visitors. When I started this blog, I never imagined that so many people would be reading what I had to say. I realize how many people I reach out to and help with each day passing. I'm glad that I can be there for those who need a little support and encouragement. Thanks!


"The best thing to do with the best things in life is to give them up."
-Dorothy Day

Monday, January 4, 2010

Trouble Sleeping

Lately I've been having trouble sleeping. Last week my doctor switched my sleep med to something different to see if it would help. It only made it worse. My average number of hours sleeping went from 4 to 2-3. I called him today to tell him it wasn't working and he switched me back to the one I was on before, only a higher dose. Hopefully that will help.

Not sleeping is one of the things that makes me anxious. The anxiety got so bad this past week that I was actually making myself feel sick to my stomach where I felt queasy. Yesterday was the worst because I was worrying about the night to come. I even cried a couple times because I was so overwhelmed (I was also extremely exhausted, which didn't help the situation). I feel much better today knowing that tonight I'll at least sleep longer than I have been.

It's hard when I wake up at 2 AM and can't fall back to sleep. I'm not able to just get up and walk around or watch TV. I just lie there and think. Music helps sometimes but not lately. It doesn't help that I have nurses at night who come in at least every hour to check in and change positions, sometimes turning me from side to side. Even though it can be disrupting, it's well needed.

Thanks for listening, well reading. Goodnight!


Friday, January 1, 2010

Happy New Year!

As we enter this new year and decade, I want to say thank you to all of those who have been with me through this journey. Your support and help is greatly appreciated, and it makes me happy to know that there are people out there who care.