Living life with multiple chronic illnesses…. and some other stuff!

Monthly Archives: April 2011

In the past few weeks I’ve noticed a big change in me.  I’ve had more energy and able to walk more.  This is HUGE!!!!!  I am so excited and thrilled and so very, very happy!  Today, I actually made it around the block.  I had done it once already with Neil by my side and was so proud of myself.  Today I was working on the computer and got the nagging craving for a coffee.  I’d been so reluctant to try and take a walk on my own, even with Shadow my Service Dog, at my side.  I thought about it, what’s the worst that could happen? I had my phone, I had Shadow who is trained to get bark and get help should I become unresponsive, and if I felt woozy or dizzy or anything I could just sit down.  That’s when I made my decision.   I went.  I walked.  I got my coffee.   It was glorious, and freeing, and so liberating!

So, what is the reasoning behind this new found energy?  Well, a few months ago a friend of mine educated me about Mitochondrial Diseases and how I seemed to fit the criteria.  I read up on it and turns out, I really do fit the criteria!  On one of the websites, The United Mitochondrial Disease Foundation, there is a section entitled “Ask The Mito Doc” where people can post questions to Mitochondrial Disease specialists. On this page, a doctor basically said that if a person responds to the “Mito Cocktail,” the current treatment for Mitochondrial disease and consists of several vitamins and supplements, that there is a good chance that they would have some type of mitochondrial disease.

What is Mitochondrial Disease, you ask? Here’s a short description provided by the United Mitochondrial Disease Foundation:

“Mitochondrial diseases result from failures of the mitochondria, specialized compartments present in every cell of the body except red blood cells. Mitochondria are responsible for creating more than 90% of the energy needed by the body to sustain life and support growth. When they fail, less and less energy is generated within the cell. Cell injury and even cell death follow. If this process is repeated throughout the body, whole systems begin to fail, and the life of the person in whom this is happening is severely compromised. The disease primarily affects children, but adult onset is becoming more and more common.

Diseases of the mitochondria appear to cause the most damage to cells of the brain, heart, liver, skeletal muscles, kidney and the endocrine and respiratory systems.

Depending on which cells are affected, symptoms may include loss of motor control, muscle weakness and pain, gastro-intestinal disorders and swallowing difficulties, poor growth, cardiac disease, liver disease, diabetes, respiratory complications, seizures, visual/hearing problems, lactic acidosis, developmental delays and susceptibility to infection.”

Still with me? If you are, awesome!  Since I enjoy having this new found energy combined with learning about Mitochondrial Diseases, I have decided to look more into it and see about getting tested.  That way I may be able to find an even better course of treatment with the help of dr’s and nutritionist who specialize in Mitochondrial and Metabolic Diseases.  In turn, transforming my little walk around the block into a walk around the neighborhood!