About Me, my disease

My name is Dr. Elizabeth McClung and I have a terminal disease.
This disease combines:

Autoimmune Disease of unknown origin which affects the immune system of the brain, destruction of the thyroid (as a secondary issue) and other autoimmune systems of the body and,
Autonomic: I have both central (heart, lungs blood pressure, blood circulation, oxygen and nutrient absorption) and peripheral autonomic failure (extremities circulation, delivery of nutrients to parts of the body, circulation consistent on both sides and neurological issues)
Neuropathy (the destruction of the five types of nerves all over the body) plus the muscles to which they are attached.

The loose general types of ultra rare disease of this type can only be determined by exclusion (excluding everything else) and in autopsy. They are called AAN after the three aspects. I will soon be alive four years from start of symptoms. That is a long time for someone with AAN, and I have outlasted the prediction of two neurologists.
I also have had a stroke in my temporal lobe which destroyed my sense of time, but also affects memory beyond a day or so. This along with the autoimmune and autonomic destruction of my brain accelerates both age regression, the ability to act instead of react, brain fog, issues of emotional liability, and dementia.

I am on many different pain medications including ones for nerve pain and others for muscle pain as well as general pain. So yeah, um, I am in pain all the time, but now with better pain management, I can put a sentence together and keep attempting to do more, think more, experience and try more.

My left eye due to muscle and nerve loss, does not track the same as my right eye which leads to double vision or two completely different images if the eye is tired and pointing elsewhere. Also sometimes it just shows garbage (like a TV on white static), so I wear a patch (arg!). This kind of misbalance and death of nerves and muscles occurs all over my body, including loss of use of a couple fingers. Oh well.
As my circulation and cell break down, Edema collects. Edema is water in the cells which cannot be pulled out, and the blood is not able to circulate BACK to the heart and the kidneys to pull it out, so there is swelling. My heart usually has 25% erratics all the time. I take 4-5 heart pills a day to stop feeling the pain of this, but it can cause my hand to turn black, or lips blue.

Due to not converting oxygen from the lungs to the blood cells, I need pure oxygen added to my lungs. I have hypersomnia (I sleep a lot, 11-13 hours a day or more). After six to eight hours my autonomic systems start shutting down from breathing, loss of diaphragm muscles to loss of heart function.
I pass out regularly due to lack of oxygen. My heart has stopped once, and my lungs several times, including the time I stopped breathing for a few seconds shy of four minutes, causing brain damage.

I am a writer, though I also have a Ph.D. I have written nationally and internationally, contributed to two books of poetry, an award winning fiction book, journals, fiction and poetry publications, a poetry award, articles and research for organizations including writing 2 years with the BBC to a research article for a PETA campaign. I have won a Kodak picture contest, had my work translated into at least five languages and was chosen to represent Canada for the UN day of the woman, in talking about disability for North and South America. I have been interviewed in newspapers and magazines including several boxing and sports magazines.

I have a dark sense of humor, and I like fiction which is about change and identity, usually teen fiction (as there is nothing like getting ill and dying to go from University lecturer to cared for shut –in to give one a sense of change of identity). I like goth and anime and the variations in it, the irony as well as the history it embraces.
I am not sure how much I time I have left, it seems more like months now, or sometime less, but I go on. I want to record what it is like, to write and think and continue to share how I see live, and how I live it.