{Medically Complex}

My list of diagnoses is substantial and often requires explanation (and spelling!) to anyone I try to explain them to, including nurses and doctors. I want to provide a short description of each illness and how it specifically affects me, for general reference.

{Mitochondrial Disease}

also known as "mito"

Symptoms: fatigue, migraines, nerve pain, muscle pain/weakness, muscle tremors, gastroparesis, brain fog

I consider this to be my most significant diagnosis. In part because it can be described as the root of all of my other illnesses, and also because it's quantifiable. I don't have a genetic diagnosis (the gold standard), but I was diagnosed by muscle biopsy and subsequent enzymology showing defects in oxidative phosphorylation complexes I-IV. At the time of diagnosis, my mitochondria were only producing roughly ~15% of the energy that they should. 

Now, some people argue that these tests that were used in my diagnosis are too sensitive. Those physicians feel that even a healthy person could, by that definition, have a mitochondrial disease or the energy production could be low as the result of another illness. Even if the energy defects are secondary to another disease, the effect is the same so in my case I have to disagree with the naysayers.

The neurologist who referred me for testing for mito had referred one patient for testing prior to me and I was by far the oldest at 17. However, since then she has referred many more and has an incredibly high track record with being right. her rule of thumb is this:

When three or more systems are involved, it's time to suspect mito. 

It's such a simple rule of thumb, but so accurate for many people I've encountered in the chronic illness world. It is often the combo of neurological issues and stomach issues, while the third system is more variable and can range from endocrine, psychological, rheumatological, kidney, to respiratory issues or more.

{Ehlers Danlos Syndrome}

also known as EDS

Symptoms: joint aches and pains, repeated subluxations, joint hypermobility, slow wound healing (cuts and bruises), slow injury healing (sprains, fractures), increased scarring, unexplained fractures

I consider this to be my second most significant diagnosis. Some physicians believe that the EDS phenotype can actually present like mitochondrial disease, meaning that all of my symptoms could be the result of EDS. Likewise, all of my EDS like symptoms could be the result of the mito. It's a toss up, and one where the answer doesn't matter (to me) since the course of action remains the same either way. 

This diagnosis was made on both clinical presentation of hypermobility, blue tint to my sclera (whites of my eyes), high palate (roof of mouth), etc and also based on a familial history of joint issues and migraines. 

{Hashimoto's thyroiditis}

Symptoms: ??

For a long time I considered this to be a throw away diagnosis (for me), because in the scheme of the mito and EDS, what did this really tell anyone? Surely it's just a symptom of one of the above, right? We truthfully found it by accident before I had any other diagnosis when we were trying to figure out "what was wrong". My thyroid antibodies were in the thousands, even though my thyroid levels were fine, which made the whole scenario even odder. Well, it turns out that as I have experienced more rheumatological issues recently, this diagnosis becomes more interesting. It's a sign that something isn't quite right with my autoimmune system. How this affects me or fits in to the bigger picture, I don't quite know yet.

{Dysautonomia/POTS}

Symptoms: fatigue, dizziness, low blood pressure, tachycardia, dehydration, difficult regulating temperature 

This was my first diagnosis, and we didn't really even understand that's what it was. The way the neurologist explained it, dysautonomia was a description of my symptoms not a diagnosis. In many ways I'm still guilty of subscribing to that because I think most of these symptoms are again due to the mito or EDS. The POTS is commonly concurrent with EDS, because EDS can cause low vascular tone, making it difficult to maintain blood pressure. The dysautonomia is more consistent with the mito, because it describes "the inability to regulate autonomic nervous system functions". Basically anything your body does unconsciously, it can struggle to do with dysautonomia.  

{Food allergies}

Symptoms: chronic inflammation, upset stomach, ulcers, joint pain, acne, asthma

I'll probably talk about my food allergies more than most of my illnesses because I happen to love food, and I do my best to eat healthy and delicious food without consuming any allergens. Which is easier said than done sometimes! 

dairy | peanuts | soy | peas | all legumes | tomatoes | tree nuts | egg yolk

The thing about food allergies is that, unlike most of my illnesses, I have the power to control this one. All I have to do is avoid the triggers, which makes it easy to become obsessed with food in ways both good and bad. 

So that's it in a nutshell--a lot of words to describe the limitations on one body.