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.

Wednesday, March 6, 2019

Words of wisdom

I haven't eaten a full meal since last Thursday. each day since it's gotten worse. Stomach cramps, like there's a guy inside with a torch, walking around my intestines lighting it up. The only thing that helps is to stop eating and lay still. Six days later, six pounds lost, I'm surviving on applesauce and Sprite. Today is a big day, I'm going to try to eat a banana, if that goes well I'll move on to some plain mashed potatoes. Ugh.

Doctor was puzzled, not the stomach flu or gallstones, prescribed some Zantac yesterday. Its helping a bit. Then prescribed the diet of rice, applesauce, mashed potatoes and toast. Awesome. the words stomach ulcer are in play now. WebMD confirms almost all symptoms, call into the doctor too.

I'm a week away from my 48th birthday and I probably have a stress induced stomach ulcer. it probably doesn't help that my diet is comprised of three cups of coffee a day, an afternoon diet coke, numerous handfuls of M&M's, daily popcorn while watching my midnight Netflix shows, six hours of sleep each night and 7 days a week of exercise.

I'm running away and its catching up with me. "Worrying is paying interest on a loan you don't have" I used that quote forever. This has been different, I haven't been talking about everything. I've decided I can wait and not visit my therapist right now "there's nothing she can do to help me" . So I internalize it. I exercise, I stay up too late, I online shop. "your body will always find a way to get the feeling out of you, whether you like it of not..."that's another quote I use frequently. Ugh.

Dermot's surgery is tomorrow morning. We've been waiting for an entire moth, A month to let the anxiety build up, grow in my belly. Manifest through bags of peanut Butter M&M's and Grande nonfat latte's...I can feel it boiling up as I write. Yuck.

I also need a crown on my molar, my step-dad just got a stent placed to cure a blockage, my mom is far away, I put my phone thru the laundry and my youngest is turning into a compulsive liar and is also racked with anxiety and there's a constant parade of nurses in and out of my house...Fuck. I wonder when I'll get few weeks of smooth, calm "normal"?

There you go, that's me in a nutshell. I think when I spit things out I feel better. "50% of the solution is telling someone else about it", that's another one of my words of wisdom.

Maybe I need to remember to have faith in myself. maybe I need to remember to have faith in general. I am where I'm supposed to be right now, "the answers will come if I am still enough to listen..." Last quote.

Thanks for reading. Please remember to think of Dermot tomorrow morning at 6:30 a.m. and send some good vibes while you're at it...


Thursday, February 14, 2019

Kidneys

They help the body pass waste. They also help filter blood before sending it back to the heart. 

So there's two tubes coming out of Dermot's back. Those tubes are connected directly into his kidneys to relieve excess fluid and preserve kidney function. Dermot has a peanut sized stone in his right kidney (unshelled) and an almond size one in his left. They are actually many stones that have fused together.

Through many tests, CT scans and ultrasounds we discovered the stones after a mysterious illness that included vomiting, high fever and heart rate and aspiration pneumonia.Last week we brought him to Mayo Clinic and St. Mary's Hospital for the nephrostomy tube placement. Because of hospital permission issues and doctor schedules, Dermot has to wait an entire month for his removal surgery. March 7th is the date. 

We hope to have all the stones out on that date, otherwise, the tubes stay and another procedure is scheduled.

Dermot now has a G/J feeding tube, two adjustable metal spine rods and two nephrostomy tubes attached to urine bags in his 77 pound body. 

Those are the facts of the situation. Also facts: My sadness grows with every intervention and every foreign article in him. My ability to concentrate lessens, I am unable to preserve my sense of well-being and I find my way into a cocoon that protects me from my feelings. I choose not to answer the call from a dear friend, because then I will have to talk about the situation. My to-do list gets littered with meaningless tasks to keep me "busy", and when I talk to you I skim over the topic quickly with strong non verbal ques pleading with you to not to ask too many questions.

The nurses have taken over the calls to the doctor because after two calls of not getting the right results I was a puddle. I gratefully delegated this task because I know I am not at full strength yet. 

In the twelve years of being Dermot's mom, I have learned a lot about myself. I know when it gets to hard, I retreat. I procrastinate. I online shop. I worry that it's too hard to be my friend. I eat way too much chocolate. I stay up way too late. 

But only for a while, then I come out of it. I show up at the Y. I start baking again. I share in my twelve step group and cry. I start talking again. I wake up every day and do the things I need to do. I pray. I get better. This is my cycle and I know it, so I allow myself the chocolate and the blanket fort and the packages delivered from UPS.

I'm struggling for a perfect end to this essay. something that will fulfill this message. I don't know what it is or what it should be. I'm beginning to feel gratitude. That's a feeling i notoriously hate, and yet I feel it. Maybe that's enough for now. Maybe I don't need to wrap everything up in a pretty package for you.
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