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*Final Words, Funeral on Dec 1 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! My name is Oella Christamae Zimpel and I am 25 years old (10/03/1985). I go by Christamae. I have an older brother, Robert (28), and a younger sister, Danielle (23). I am blessed to have two devoted parents, Danny and Christine. I am also extremely close to my Grandma June (maternal Grandma). My sister is my best friend. I am pretty darn close to my whole family. My cousins have lived with us off and on most of my life, especially my cousin Shayna (27), who is practically another sister. Family is supremely important to me. We have a pretty unique situation (detailed further on) that means everyone must contribute and compromise.
The thing that I base my whole life around and is my greatest strength is my faith. God is my anchor and light. When I am feeling beaten down by life, I lean on my Savior and draw hope in the promise of my eternal future. I belong to The Church of Jesus Christ of Latter-Day Saints aka LDS aka Mormon. Right above my computer (where I spend the majority of my time) I have a picture of a young woman being held and the biblical verse, “Trust in the Lord with all thine heart.” Right below that is the phrase, “God grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.” I collect quotes and have several others displayed in my room. My favorite place to be is in the Oakland temple.
A very close second is Disney World. I am also a humongous Disney fan! I love Disney movies. I collect Disney pins…Disney=:).
I am extraordinarily grateful to live in the U.S.A. I treasure my hard fought for freedom. I have never missed an election. People died for that right. The least I can do is my duty.
I spent the majority of my life in Oklahoma. We moved to California when I was 17. my parents had both graduated with Master’s in Computer Science and were in search of the American Dream and to better their lives and break free of government assistance.
I can’t really continue my story without revealing the other thing that has influenced my life and development tremendously: my disability. My primary diagnosis is 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. Muscular Dystrophy effects many body systems and I have additional problems not directly linked to the Muscular Dystrophy so I will break it down by body system further down.
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 try to debunk myths and misperceptions. 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 high school honors (3.88) and 9th in my class. My college major is Psychology. I am looking into being a child/family counselor, a substance abuse counselor, or being a Behavior Analyst who designs programs for developmentally disabled children.
Unfortunately, my parents plan for the future went on a hiatus due to the progression of my disease. Shortly after we moved to California I learned that my scoliosis had progressed to a life-threatening 125 degrees. I had a two-part spinal fusion which caused a progression of my Muscular Dystrophy and many other complications. The level of my medical care required my Dad to devote his time to me. My mom has a milder form of Muscular Dystrophy so she can’t do all my care. In addition my sister also has Muscular Dystrophy and is in a wheelchair. Thankfully, she now has a nurse that helps Dad.
Grandma and Grandpa moved to California with us. Grandma has always been thoroughly involved in my life and taking care of me.
Now the breakdown of all my medical issues.
Respiratory:
• low vital capacity/PFT(I only use 16 percent of my lungs(last tested in 2002, so highly probable that it is lower), healthy people use 90%+)
• tracheostomy (trach) 5.0 Bivona pediatric cuffed trach with a stoma seal that is specially made
• asthma
• Reactive Airway Disease
• sleep apnea
• permanently collapsed lower lobe of left lung (injury from spinal fusion)
• Ventilator dependent 14-20 hours a day (Newport HT-50). Also oxygen dependent.
• Deviated trachea (pre-trach difficult intubation, post-trach need for specialized Bivona)
• Soft voice due to severely weakened muscles from Muscular Dystrophy. I have a voice amplifier to help compensate but my voice is pretty impaired
• Multiple pneumonia/bronchitis
• Medications/treatments: Claritin Redi-tabs, Atrovent 2x a day, Xopenex .63 every 3 hours, Xopenex 1.25 before bed, Pulmicort 2x day, Hypertonic Saline 2x a day, Pulmozyme 2x a day, trach and vent, suctioning as needed/requested.
Muscular:
• Severe generalized muscle weakness
• Severe contractures (my muscles are frozen in place, I can't unbend my arms, separate my legs, yada, yada, from my neck to my toes, every muscle is involved including my abdominal muscles so I can’t lay on my back. I am basically stuck in a sitting position)
• Weak swallow/aspiration so no food by mouth
• Severely weakened diaphragm and breathing muscles (see Respiratory)
• I use a specialized Invacare electric wheelchair full-time with tilt, recline, and elevator seat. Full assistance/’dead’ lift to transfer
Orthopedic
• Hip problems (dislocation, surgeries)
• Scoliosis that progressed to 125 degrees- corrected to 30 degrees with an anterior/posterior fusion anchored to the pelvis. I went into surgery with an 80 percent chance of survival. I had many complications (see Surgery/infections/previous conditions) that resulted in a189 day (6 ½ month) hospital stay.
• Bone deformities (mainly wrists)
Nerves/sympathetic nervous system
• Spinal seizures (propriospinal myoclonus) caused by back surgery when the membrane was nicked and all the nerves were torn from excessive stretching/correction. They are myoclonic in nature with jerking, spasming, cramping, and pain
• Reflex Sympathetic Dystrophy in both feet. Extreme sensitivity and pain. I cannot wear shoes.
• Nerve damage on the left side of my face, left arm elbow down on the left side, left palm, and pinky, ring, and middle finger caused by back surgery
• Nerve damage from numerous surgical scars
• Chronic pain
• Treatment/medications: Methadone for pain, ¼ Fentanyl patch, and Dilaudid for breakthrough pain
Digestive/nutrition
• Severe gastroparesis (my stomach is essentially paralyzed-the small amount of food I can tolerate bypasses my stomach through my J-tube into my jejunum also known as the area before the small intestine)
• Mic-key GJ tube: g port has a drain, j port for oral feeds as tolerated
• GERD-corrected with fundoplication
• Potassium deficiency
• Chronic gas/bloating/upset stomach
• Previously had a port (October 2002-July 2006) for supplemental IV nutrition. I was able to maintain nutrition orally until my food was discontinued. December 2009 a new port was placed. I had several interim PICC lines that were replaced due to infection. After infection contaminated the line, I was given a different type of central line-a broviac. My digestive ability has really diminished. I run TPN and lipids 18 hours a day. I would estimate it as 95% of my nutrition.
• Treatment/medications: Fundoplication, Farrell valves/bags for gas (G & J port), Food: Optimental 5-8 continuously (as tolerated) through J port on a Flexiflo pump. The majority of my nutrition is given intravenously via broviac. Hyperalimention (TPN) 7 days a week, 18 hours a day with lipids 4 days a week, 18 hours a day. Supplemental Potassium.
Neurological
• Recently (2009) I discovered through a CAT scan that I have extra fluid in my brain. At this point it is not severe enough to be called hydrocephalus or require intervention. I just have to monitor it.
• I only have approximately half a brain. I am missing almost all of my middle brain. The fancy name is hypogenesis of the corpus collosum or hypo dense white matter. It basically means that I was born with approximately half a brain. Fortunately, it has not affected my intelligence.
Psychological
• Generalized Anxiety Disorder
• Panic Attacks- These are pretty awful. It is just this absolute dread and feeling of being in ultimate peril. Yuck.
• Nightmare Disorder- I have had nightmares every night, throughout the night for three years. Sometimes I’ll wake up in the middle of the dream feeling panicked. I don’t like sleeping.
• Treatment/medications: Lexapro daily. Counseling. The very best thing is going to the temple! Also, the little dog, Taco, we found help, especially with nightmares. I just have to hold him awhile before bed.
Other:
• Nearsighted (glasses)
• Ridged ear cannals (wax build up, infections)
• Half toenails from ingrown toenail surgery (age 2)
• High palate
• Crooked teeth
Surgery/infections/previous conditions:
Muscular Dystrophy is a progressive condition. I was never able to run or jump. I had a penguin-like walk until about nine. But I couldn’t go very far and fell often. Leading to my first treatment.
• 7 Separate sets of stitches-required stitches from falling seven different times
• 4 concussions from falling or flipping my chair.
• Tore the ligament behind my right knee three times and my left knee twice.
• Multiple muscle strains, twisted ankles, etc.
• Between the ages of four and ten I had many hospitalizations for bladder infections/dehydration. This issue resolved
• When I was in 4th grade I was hospitalized for a severe pneumonia. I had a home nurse for about a month while I rehabbed.
• I have struggled with numerous bronchitis/ pneumonia infections all my life.
• Colonized bacteria in my lungs. I have two. One is Pseudomonis. Basically I have constant lung irritation. This means I am constantly fighting mucus. I require a lot of suctioning and breathing treatments to prevent bronchitis/pneumonia or an overgrowth of one of the colonized bacteria.
• Blood infections (7) from my central line that I use for nutrition. We were told to treat my dressing changes like I am a neutropenic patient with no immune system.
• Sweat gland growth was surgically removed.
I try to stay positive and abide by my motto-Have an Attitude of Gratitude! I won’t lie, though. Sometimes life gets me down. That’s when I slip on my perspective glasses. This earth life is just a sliver of eternity. I have so much time of health and happiness if I can just power through and prove myself during this speck of time.
I will try to write an update once a week.
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, November 26, 2012 8:06 PM CST Hello everyone,
This is Danielle, Christamae's sister. I'm sorry to say that Christamae passed away, about a week ago. It wasn't as peaceful of a passing as she was hoping for (our best guess is a burst pulmonary vessel/clot), but it happened very quickly and with her family around her. I had already laid down and couldn't get up, but I had just said goodnight to her and we had some sweet parting words, and I am so so thankful for that.
I want everyone to know that she lived and fought up to the end. She kept reading -- especially her Scriptures, kept Facebooking and talking to loved ones, she wrote final messages. She drank liters of soda! :) (she drained it from her stomach but apparently loved getting the flavor and moisture; it was so nice to see her enjoying that). And she showed her love for her family by making spending time with us a priority. She and I played Nancy Drew (a fun computer game) together. [In fact, the last thing she said to me was, "We should finish our game tomorrow."] She, our cousin, and I chatted like old times. She talked with all of us. And she made sure we always had our evening family time. Christamae continued doing what she could to take care of her health, even when things didn't look good. She kept up her regular breathing treatment regimen. She kept with her TPN and other medications. She let us try giving her coconut milk to supplement her fat. The only thing she didn't do was treat an infection that would have kept coming back. She was considering stopping life support before the pain got out of control and/or her organs started failing, but in the end she didn't have to make that decision, which I feel was a mercy for everyone.
Life will feel empty without her -- the best friend, sister, and example a person could ask for, but I also know that she is so much freer and happier now. She was ready to go and had not a single doubt as to what would await her. She had such strong faith. I don't know that I've ever met anyone that believed and followed His Gospel so whole-heartedly.
Christamae wanted me to share this final message she wrote to all of you:
"Some of you are probably wondering why? Or it’s not fair-she was so young-she could’ve done so much more. But I did exactly what I needed. My mission was over. Complete. I’d fulfilled my purpose. Please move past your pain and love God and fellow man. I don’t want you to wallow or hate. Be joyful. Remember me with a smile-not a heavy heart. Thank you all for your friendship and support. I know that God sent some of you to help me through certain times. Now I know that I am with my strongest foundation-my Heavenly Father. I am basking in my Heavenly parents love and brother Christ’s care. Free of pain and perfected. Know that I am looking down on you and awaiting your arrival…I pray that you will find or stay close to the greatest gift, highest hope, and perfect peace the Gospel and God gave me. If you admired me for the way I acted, you can find that peace and hope. The gospel helped me look forward and keep an eternal perspective to transcend my trials. It is my hope and dying wish that you’ll give it a go-listen to missionary discussions attend a testimony meeting, read the book of mormon- for I know it will help you so.
‘Til we meet again
Christamae"
Thank you all so much for the support and love that you've given my sister throughout the years. I know the kindness, friendships, and opportunities to support some of you in return that she received from her connections via Caringbridge was one of the main things that kept her going, especially in her final years as it became more difficult to get out and about. If any of you is interested/able to attend her funeral/memorial services, they will be held December 1 at 1:00 pm in Modesto. Please email me for the address at Christamae's account -- ldspeaker85@hotmail.com -- with "Christamae's services" in the subject line.
This parting is so difficult, but we will see her again. Until then -- run, dance, laugh, embrace, sing, and rest in peace Christamae.
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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E-mail Author: ldspeaker85@hotmail.com
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