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*Update Monday, August 4 Oella Christamae Zimpel  
LOOK THROUGH
By: Christamae Zimpel
What do you see when you look at me?
Do you really see me?
At first glance a jumble of tubes and machinery
Wheelchair, ventilator, trach, port-o-cath, and GJ tube
Such a menagerie!
So hard to see through
To my personality
Look through the equipment
The lifeless blockades
See through to the person
The spirit within
Dig deeper to the human; the soul
Passionate, determined, caring, understanding, and witty
No one more competitive
More than machines
Worthy of being known for me
Perceive past the outside
The tainted mask
Use true sight, not just eyes
So you may see the true me
What do you see when you look at me?
Do you really see me?
Hello, one and all! This is where you can learn all about 21 year old me! This is made especially so I can build an online support group or caringbridge family. A little background info:
I was born with Congenital Muscular Dystrophy with hypo dense white matter. In English that means I have a progressive muscle wasting disease that effects every muscle from my head to my toes and only half a brain. Fortunately, it has not affected my intelligence. Some complications of this disease are severe scoliosis (curvature of the spine- mine is 125 degrees-corrected to 30% with a anterior/posterior spinal fusion involving a 6 1/2 month hospital stay with multiple complications), low vital capacity (I only use 16 percent of my lungs, healthy people use one hundred percent), tracheostomy (trach), asthma, sleep apnea, permanently collapsed lower lobe of left lung, severe contractures (my muscles are frozen in place, I can't unbend my arms, seperate my legs, yada, yada, from my neck to my toes, every muscle is involved), generalized severe muscle weakness, GERD-fixed with fundoplication, severe gastroperesis (delayed gastric emptying-my food digests really slowly and my stomach stopped digesting), mild Reflux Sympathetic Dystrophy (extreme sensitivity and nerve damage in both feet), Spinal Myoclonic Seizures (seizure activity caused by nerve problems in spine with complete consciousness), sinus arrythmia, late and early heart beat (The heart beats are supposed to be evenly spaced. Mine are different lengths apart-some closer, some farther away. Early beat: The heart interrupts the rhythm causing my heart chamber to only fill halfway. Late beat: The heart waits too long for the next beat so the chamber overfills. Result: My heart has to work harder and is not as efficient as it could be), slightly elevated ejection level (strength it takes to pump blood through the heart), chronic pain (controlled with narcotics), and near-sighted. Schew. :) I use an electric wheelchair to get around and have to have help with all physical tasks. I use a ventilator when I sleep, when I am sick, and 4-6 hours while I am awake. I have 24 hour GJ-tube feeds for all my nutrition and can no longer eat by mouth. I also have a port-o-cath for blood draws every other week because my veins are neonatal size, roll, clot, and blow. I get additional calories through my port with lipids 2x a week. All right but now on to the real me. I love to read, write, talk, listen to music, research politics and health issues, go online, and watch TV/movies with my family. I have been in Jazz Choir and All-State Choir. Unfortunately since I got my trach-March '03-I lost my ability to sing. You never know what will happen, though, since after 6 1/2 months of being unable to talk, I suddenly regained my ability to speak. Hooray! So, there is always hope. I especially love The National Forensics League (people always look at me weird whenever I say I was in the NFL!). I qualified for their National Tournament summer of 2002 with my Original Oratory which was about disability discrimination. In fact I am a huge disability advocate and plan to focus my future law career around that. I would like to work to help doctors know how to relate to people with disabilities and give first hand account experiences to patients who are about to undergo procedures. I graduated with honors (3.88) and 9th in my class. I hope to improve education, independent living, technology access, and healthcare for the disabled. I am looking into being a school psychologist who makes sure students who're disabled get the right services, being a child/family counselor, or medical social worker in a hospital. I am very religious and enjoy reading my church doctrine. I am a huge Disney/Disney World fan. I collect stuffed animals. So now that you have the basic background you can check out what is up right now.
I love guestbook entries, so if you visit please sign! Thanks for taking the time to get to know me!
 | Cheer Bear
You're the Care Bear cheerleader! Your spunky personality and optimisim lifts everyone's spirit. Though you want everyone to be happy, you stand your ground on issues you feel strongly about and this can bring disunity among your friends. Despite this, you are a true believer in working together. | |
Quotes to live by
Keep your face to the sunshine and you cannot see the shadows.
Helen Keller
You can complain because roses have thorns, or you can rejoice because thorns have roses.
ZIGGY
It is only with the heart that one can see rightly, what is essential is invisible to the eye.
Antoine de Saint-Exupéry
We make a living by what we get,
but we make a life by what we give.
Sir Winston Churchill
When you come to the edge of all the light you know, and are about to step off into the darkness of the unknown,
faith is knowing one of two things will happen: There will be something solid to stand on, or you will be taught how to fly.
Barbara J. Winter
TO BE SPIRITUALLY MINDED IS LIFE ETERNAL
True independence and freedom can only exist in doing what's right. - Brigham Young
It's not about getting what you want, it's about wanting what you get.
Lyrics 'I'm Gonna Soak Up the Sun'
My sayings
By not trying, you automatically fail.
Don’t expect from others what you don’t expect from yourself.
Have an Attitude of Gratitude!
Ultimate Fav'
By Mattie Stepanek:
Everything in life is a choice, even if the only choice we have is the attitude with which we embrace each moment.
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 Outside Oakland temple after my Endowments (May 28, 2005)
*HUGS* TOTAL!
give Christamae more *HUGS*
Get hugs of your own
Journal
Monday, August 4, 2008 1:38 PM CDT The past week had a bit of everything.
I had an orthopedic appointment with Dr. Diab because of hip pain. My hips are in but he said that they are arthritic and like a 50 year olds. The cartilage is thin because I am not weight bearing. Treat with anti-inflammatory/pain meds. Intolerable-cut off the part rubbing. I think I make him feel guilty. Every time he sees me he apologizes like I am sorry that things turned out this way, I am sorry you got the trach, I am sorry that your life is so different, it's a shame that things were so complicated, etc. Mom has said that she wonders how things would've been if he hadn't have forced so much correction. My curve went to 30/40 degrees from 125. Mom would've been fine with 70 or 80 which is under the cardiac pressure curve (90 degrees). I don't think there is any use contemplating what might've been. This is the way things are. But mom is thinking about changing orthopedic docs to someone that will be more aggressive with medication. I don't think anyone else will be different and (heaven forbid) I need more surgery I would much rather be in peds with a chance to stay in the PICU. ...We went over to see Cam to give her the pictures. We were parked in a zone that was tow away at 1:00. Well we didn't make it and got a $70 ticket. Ouch...
Dad finished tiling the back bathroom. It was a challenge to only have one bathroom. And now Dad has to take out the front bathroom...that will be interesting...
We went to the county fair Saturday. The fair was huge in Oklahoma. It was understood and accepted that kids would miss school that week and some schools even let out for a day or two. We entered contests for several years until they started charging admission fees. I always won something. And always placed high-usually first for the category in prettiest pumpkin decorating. One year Grandma's bread won the big prize and there was an article in the paper. There were all kinds of shows. The singer Dennis Lee had Danielle and I up on stage for his show when we were young. I reveled in the attention. There was a huge ramped area in the expo center that I loved going full speed down. Whee! The food was awesome especially the lemonade in the heat. All sorts of animals to see. Fun and interesting things to buy. Rides that I convinced mom to let me go on. The most memorable was the Himalaya a roller coasterish type ride that went in circles and up and down hills progressively faster. I loved it! I bounced up and down in the seat (which freaked mom out) and screamed yea! when the guy asked the trademark phrase- 'do you wanna go faster?!' Poor Dad got so sick from that ride...Everyone stressed for my safety since I kept lurching out of the seat. I remember Grandma and Dad clinging and pushing me down and me protesting cause I loved flying up. Good times. The county fair here was pretty good. My arm is tired from driving around. We all had a pretty good time. There were some nice exhibits. I liked the reptile one like the legless lizard that moves really neat. There was a real alligator in the open. I touched a boa constricter. They are very smooth and muscly. We met a family with a boy in a wheelchair and trach and vent and he couldn't talk cause of the trach. We talked with them for a few minutes. The mom was admiring our set up. There were two, uh, interesting people. One was this lady that came up to me all authoritatively and was like 'hello, sweety. where's your mommy?' 'in the bathroom' 'well okay. don't wander off.' I was thinking uh, yea I am 22 and could be at a gambling hall or bar (I nevet would be cause of my religion but still...). The other was one guy that was freaky. He kept standing really close to me and just staring. Dad kept asking if he needed something or had a question and he would just smile weird. Dad and I finally left the area because he was a bit disturbing. I found what I had been craving-fresh lemonade-yum. I drank a good portion of it myself. We met a representative from Monterey Bay Aquarium. He looked at our family and said that he would get us free tickets and a tour and could even arrange for us to come before or after hours. So that was cool. I want to enter the Christmas ornament contest next year. It was enjoyable.
We'll have to see what adventures happen this week...
Thanks to everyone for all there support and kindness. I love it!!
Read Journal History
Hospital Information: Patient Room: HOME!!! UCSF Children's Hospital
505 Parnassus Ave., Box 0290
San Francisco, CA 94143-0290
Links: http://www.patchworx.org A great support group with chats, bulletin boards, games, contests,etc. for kids/teens/young adults with chronic illness/disabilities
http://www.makeawish.org A wish granting organization. If you know a sick kid refer them here so they can get their own wish. Mine was awesome! Feel free to donate to this worthwhile organization.
www.disney2go.com & www.cutecolors.com The graphics on my website come from these two websites. They have lots of other awesome pictures!
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