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UPDATE Monday June 29 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-Exupé²¹
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, June 29, 2009 10:10 PM CDT Not a lot going on. But this week we are going to make some summer fun plans. I want to go to the museums in San Francisco park, the space center in Oakland with the special videos, and Monterey Bay Aquarium.
It is hard to believe that Independence Day is Saturday! That will be fun! I have always really enjoyed 4th of July. When I was younger and in Oklahoma it was always a big affair at the farm. All the family would get together. All day fireworks were going. And at night everyone pooled fireworks for an impressive show. It's not the same here. But we are always sure to set off some fireworks.
Martie Loftin and her son, Kent, both came for another visit. They will be back this week. And my friend, Laurie Frazier, is coming Wednesday.
I am excited for Harry Potter! :)
On a more serious note, Grandma has been having some health issues. We are all crossing our fingers that it isn't anything serious.
We have started watching the old series Voyager from the beginning. It is our summer series.
Thanks for coming by! I promise things won't keep being boring! Stick with me-I treasure your support and prayers!
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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