I am finally well enough to get up for a long enough period to get into my office to my “big girl” computer. I have a Kindle so I can look at my e-mail and type out a short message, but to really write I need to be able to get out of bed and to the keyboard.
Plus the truth is I have been depressed. So it is an emotional trip, as well as a physical one that has kept me from writing. I tend to want to wait until the other half of the story, the good and happy part, emerges before I write. I had a really bad day, but then….
Right now I am in a place where the turning point towards the light seems far away.
I have become resistant to several of the antibiotics that are commonly used. Since the first of the year I have had to be on antibiotics more than a dozen times, including a couple rounds of IV antibiotics. Even though I am now on the third type of antibiotic I have taken back to back, I still feel horrible.
Close to 30% of people who have MSA end up dying from a urinary tract infection. I have been dreaming about taking the catheter out myself, although that would not stop my urinary issues or stop the chance of infection. My daughter, the nurse, has asked to sit down and have a talk with me about the steps taken when someone ends up in the hospital with this kind of infection. She says that there might be things I want to decide ahead of time, like the things I already have written like “do not resuscitate, or do not intubate”, there might be some additional things I might want to add to my directive. I can’t imagine what those things are, maybe “don’t poke me with a fork” or “do not play country western music in the patients room”; but probably not.
I have filled three journals since my diagnosis a year ago. The last one I filled in less than a month. I find drawing is very helpful to keep my anxiety level down. I this last journal most of the drawings are mandalas, which seem to be the most relaxing for me to draw, but as I draw late into the night and my hand craps up they take on an edgy, frantic look, like drawing it will somehow keep me alive.
I keep thinking I am doing something wrong to get these infections. And other people are always ready to jump in with their ideas. So are you changing your catheter bag often enough? (No, I have been hired by the government to develop a new weapon of mass infection) Are you drinking enough water? (No, I have totally switched to tequila).
I am following all the reasonable advice about how to care for this bizarre tube sticking out of my stomach. Drinking lots of water, no baths or swimming, good hygiene, frequent equipment changes, once a month sterile tubing change. But that number, almost 30%, keeps going through my mind.
I have started a list of things I no longer have to worry I am going to die from. I have stopped wearing sunscreen and have a great tan. I could (but have not up to now…) smoke all I want and drink like there was no tomorrow. I could have unprotected sex willy-nilly and not pay attention to signs that say Danger. I could skydive, start fights in bars, and hunt rattlesnakes.
I think instead I am going to continue to do the really dangerous things like breathe deeply, feel all my feelings, say everything I need to say, and live my life to full each precious day.
In grace and ease,
Welcome to my blog. Here I will write about all things Cathy.