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Archive for the ‘Raising Awareness’ Category

Tomorrow is always a day away

Posted in At the Doctor's, Energy for Life, Hope, Hospital life, mito, Raising Awareness, reality, Stealing words, The Future on 18 January 2011| Leave a Comment »

So I haven’t updated much because there’s really been very little change. I’m still stuck in a hospital room, unable to get the necessary nutrition through tube feeds, bored out of my mind. For the last week or so, I’ve heard that I’ll be going home “tomorrow.” I’m pretty sure that’s medical speak for “never,” but I’m still hopeful. The pancreatitis attack is over and my aspiration pneumonia has cleared. I feel fine and just want to go home. I suppose the positive is that we’re finally getting things in line so when I do go home, I won’t end up back here.

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Inside the Mitochondria

Posted in In Motion, mito, Raising Awareness, Stealing words on 14 January 2011| Leave a Comment »

Or “Mitochondrio,” according to Jonah’s “Latin.”

I came across this video a while back. It explains a little more about how the mitochondria work and how a single step in the energy-making process can cause the entire production to fail. I hope it’s able to help the non-biology-oriented mind have a better understanding of what “Mitochondrial Encephalomyopathy due to a Complex I Deficiency” means in terms of how my cells function, or rather, don’t function.

Also, I want to encourage anyone and everyone to ask questions. About the cellular process, about my particular deficiencies, about my symptoms, about my diagnosis and the diagnostic process. No question is too invasive. This blog is not just an outlet for me. And it’s not just a means of communicating to all my friends and family. This blog also exists to educate and help raise awareness about Mitochondrial Disease. If you’re still confused, then I’m not doing my job!

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A Little More Complex

Posted in At the Doctor's, Boston, Hope, Hospital life, Keith, mito, Raising Awareness, reality, The Future, umdf on 13 January 2011| 2 Comments »

It’s hard to describe exactly how I’m feeling.  My emotions are still incredibly complex and difficult to decipher.

For well over a year, I’ve lived with a “clinical” diagnosis of mitochondrial disease, the result of a lifetime of various symptoms and presentations. What does this entail? Many of my doctors felt that my symptoms and test results were indicative of mito. And they were going to treat it as such. Unfortunately, there is a bit of a stigma attached to a clinical diagnosis. Both in the medical field and among other Mitovians (families affected by mito). Physicians don’t take it seriously (no “proof”!) and frequently suggest a psychological basis (either on behalf of the parent or the patient) to explain the multitude of medical issues – despite tests implying otherwise. And the mito community itself frequently scoffs at clinical diagnoses. Despite all the good we gain from the camaraderie provided by the amazing support network of the mito community, there is also plenty of judgment and doubt.  Some diagnoses are deemed “more serious” or “more true” based on the diagnosis method.  It’s unfortunate, but true.

There are diagnoses based on muscle biopsies (these seem to be given the most credence, despite the high false negative rate).  And there are diagnoses based on genetic mutations or deletions (these are usually given a good bit of respect, but have a high false positive rate, because although mutations are present, they may not be expressed).  Finally, at the bottom, we have “clinical diagnosis.”  These are generally symptom-based with a few objective studies and laboratories to back up the decision.  These are often regarded as untrue, made-up, without basis.  And it sucks that patients aren’t given care by doctors just because these clinical diagnoses are not believed.

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