Wednesday, June 26, 2019

There's no way around it.

The nurse is downstairs with Dermot. I'm upstairs at my computer. I'm gearing up for my second trip to Target today. The prescription was sent to the wrong pharmacy and I'm chasing it down. Only took four phone calls and about seven minutes on hold.

My quiet panic that lives beneath my sense of well being is slowly creeping to a low hum. My heart is beating a little faster and my insomnia is getting in the way of a good night's sleep. Oh and also the fact that every other night I get up in the middle of the night with Dermot to remedy his lack of oxygen. Turn it up? Nebulizer treatment? Or the ever popular deep suction. Last night it took all of those. This is typical these days and as my husband and I trade off every other night the lack of sleep over a twelve year period is taking a toll on both of us. Is this his new baseline?

My short term memory is shot. I stutter occasionally, lack of desire to participate in activities and a general feeling of isolation. Being awake in the middle of the night when everyone else is asleep will do that to a person. My health could be better, my ulcer is under control, and I'm still off the coffee. Have you ever had to deal with sleep deprivation without coffee?

This life is hard, there's no way around it. There's no way around it. That's the hard part. No escaping the pain of the obligations of being Dermot's mom. His condition is degenerative, meaning:(of a disease or symptom) characterized by progressive, often irreversible deterioration, and loss of function in the organs or tissues. Meaning, he will slowly die from his symptoms. Deep breath.

We discovered thru some recent testing that he does NOT have mitochondrial disease. Just when I had finally figured out how to spell it!

Dermot has been diagnosed with: BPAN: (Beta-propeller Protein-associated neurodegeneration). So that's even harder to say. The diagnosis isn't much different than mitochondrial disease, but now its official. There's no more wondering. If you'd like to find out more here's a link: http://nbiacure.org/learn/nbia-disorders/bpan/



I know what to expect, what to look for. I think I liked not knowing better.

I speak with friends occasionally and they all seem very relieved that we have nurses for 40-60 hours per week. I'm relieved too, but that only brings up new issues. Like the fact that we have nurses in our house 40-60 hours per week. then they ask about night nurses. I tell them we have one every once and a while. Last week, fours nights! This week, one night. so there isn't any consistency to it. we are taking what we can get. 

Truth is I'm scared most of the time. I look to outside fixes to my internal pain. Shopping isn't working, exercise isn't working, carb loading isn't working. Time to search for Grace again. TIme to ask for help again. Time to surrender to my life and stop fighting my feelings.

Deep breath.

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