My Many Mito Adventures...

My Buddy Satchel

Thank you all for taking the time to visit!

Welcome to my Web Page. It is awesome to finally have a place to keep my family and friends updated about my adventures living with Mitochondrial Disease, my daily activities, challenges and even my writings.

So, what is Mito you ask?
Mitochondrial Disease occurs when there is a problem (mutation or deletion) in the mitochondria or in the mitochondrial DNA (mtDNA). This causes a disruption in the production of energy in any of the 5 complexes utilized to generate ATP for the body. When there is a failure to create energy the body and mind suffer. It is like running a 4 cylinder car on 2 cylinders.

I have Mitochondrial Cytopathy (meaning multiple organ systems are involved) with dysautonomia (meaning my body struggles to regulate functions that should be regulated automatically).

Originally diagnosed in 1987 my life has changed dramatically in the last 8 years. I now use a power wheelchair named Stella to get around (she has a lot of personality). I am now on TPN (Total Parenteral Nutrition) continuously as well as IV Hydration, I use a V-Pap (a non-invasive vent) whenever I'm sleeping, resting or have air hunger, and all my medicines go into my T/J tube or Central Line.

Oh, how life has changed! But I wouldn't trade my experiences for anything. I've gained a lot of character (inside family joke).

I hope by maintaining this website I WILL: Keep in Touch, Educate, Inspire, Support Others, Appreciate the Gifts I've Been Given, Live Each Day to the Fullest and Hope for a Cure! Speaking of a CURE I just found out that if you use GoodSearch.com (powered by Yahoo) for all your internet searches you will be donating a penny for every search. I know it doesn't seem like much, but over time those little pennies can pile up. Do me a favor and at least check it out. Consider donating to: The United Mitochondrial Disease Foundation, Mitochondrial Disease Action Committee, or The Muscular Dystrophy Association. THANKS!






Don't forget to sign the guestbook. I Love getting all the messages and seeing who has visited!





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Saturday, March 21, 2009 7:38 PM CDT

I know it has been a very long time since my last journal update. No excuses. A few updates:

I finally received my new bed! Although it is missing the rubber floor gaskets which would prevent Satchel from riding it like a surfboard when he takes his running leap from the doorway only one of us seems concerned about this.

Jake came home with his roommate for 4 days prior to going to Boston to stay with family (Kevin and Lisa and the girls). His roommate went to visit his girlfriend at Harvard. Both boys were happy for the access to Harvard’s Rare Book Library to aide in the writing of their sophomore papers which in turn will hopefully lead both boys to be enabled for their last two years at St. Johns.

Ellen made it through her hip replacement surgery without any major complications. She was doing stairs and driving before the 3 week was over. She is going a bit stir crazy but is taking care to not put her new joint at risk.

I’ve been through yet another triple lumen central line placement having convinced the surgeon that I believed some of the bad luck with the lines related to the continues use of the veins that already have hosted many lines and have additional buildup of fibrin. I am healing, but the placement of this line was indeed difficult and painful.

This coming week I am having my T/J tube replaced. This will be the second one since my last post. We don’t have any idea or understand why these lines get so nasty and non-functioning as quickly as they do.

I’m not sure what to say about my PCA issues. Out of the three hired only one has any background with any relation to my needs. I feel like I’m babysitting the other two. With them only here 2 days per week they simply cannot get it. I believe this is unfair to me, AND them and placed the agency in a predicament.

I am SO tired of having to fight all these battles. You can’t imagine the amount of energy (usually negative) that gets wasted on this matter.

Everyone is sick… and of course this means that I have been exposed to all kinds of crud.

To top everything off my Brain in the Box died. It has taken me a bit to figure things all out; I decided to go with a pocket pc rather than a palm system. My new brain and I are getting to know each other. One thing for sure this brainII has way more potential then my palm brain did!

Spring is here!!! I can’t wait to be able to spend more time outside!

My thoughts and prayers are with all of my cb/mito/mda families. I may not be on the computer as much these days, none the less you are all still carried in my heart. To everyone else who stops in to check up on me… thanks. Your messages warm my heart and give me reason to keep on keeping on!

Love and Hugs,
Kristie

E-mail Author: kristiep@frontiernet.net

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Note: The foregoing information was authored by the patient, parent or guardian, or other parties who are solely responsible for the content. Such announcements or their content are not necessarily endorsed by CaringBridge, Inc. or any sponsoring agent. This information does not confirm that anyone is or was actually a patient at any facility.