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The Ugly And The Beauty

For the last two days my friend that I’ve known since we were 14 years old text me and asked how I’ve been doing? After I tell her, she proceeds to enlighten me on writing out my story. She has a vision of me being an author. I personally don’t see it, but I do appreciate the encouragement. So, on the advice of a great friend, who knows who she is, I will be undertaking the task of writing in detail every detail of living with a rare disease and also a trach and then of course when I get the dissection surgery done.
I have not written for a long time for my personal blog, but I have been doing a lot of writing for my composition class for school. Yes, I am in college finally going towards my BA in Psychology, but still the obstacles that I am facing are about to blow me over with a feather. A lot has happened since December 7, 2011 when I had the fateful surgery that changed my life with a stainless steel trach placed in my throat. For which I am living with now and has caused me such dire feelings about this whole Granulomotisis with Polyangitis (aka Wegener’s disease). The disease attacks my trachea which is an important piece of equipment for the body. The trachea helps the body received oxygen into the lungs and is long. A healthy trachea is 12mm wide and to get an idea about what I am breathing through. I am currently breathing through a 5mm trach tube. That is more than half the normal size of a healthy trachea. When I first got home I was using a 4mm trach tube. That was like breathing through a straw. I digress, my immune system attacks my trachea and causes scar tissue to form which is weakening my trachea and also narrowing it. I have had more than 12 surgeries since my first one on December 9th, 2009 and my last one was on December 7th, 2011.
I live my life based on my trach and the care it now requires of me. It is a challenge. Yes, I have a good attitude, but there are days when I just want to rip the whole darn thing out and say forget it. I know that is not conducive to my over all health. I endure the stainless steel pole sticking out of my throat, the nasty gunk that is half blood and half snot. The uncomfortable coughing fits that become so violent that I have to run to the bathroom or risk peeing on myself.
My routine consist of me getting up two to three times, putting my inner cannula in some peroxide for a few minutes. Then I use a wire brush that comes in the trach cleaning kit that I get from my medical supply company to push through the foaminess and clean out all the gunk that clogs it up. Doesn’t that sound lovely? Then of course, every two weeks I have to take the trach out and let it soak in the peroxide solution while I am cleaning the wound. The hole is the size of a quarter and is more like a whales blow hole than anything else. After I clean the trach the same way I clean the inner cannula with the wire brush and peroxide I then reinsert the trach back into the hole. I do not like this part of the trach cleaning process out of all the things that I have to do in order to keep it clean and clog free. I loath taking the whole trach out and then having to twist it a certain way and then stick it in the hole with the special tool so that I do not cut myself with the stainless steel and then make sure I slip it out so that I can breathe. There is a special suction sound that my throat makes that lets me know that the trach is in and then I can Velcro the straps that hold the trach in place and continue on with my day.
Lately, I have not been doing much of anything. I stay home, I go grocery shopping with Myron my caregiver, or go to doctor appointments with my sister in law Kris. It’s difficult for me to go out in this condition and not being medically allowed to drive makes it rather difficult. I would go out and walk, but considering where I am being attacked, hardly able to breathe properly walking to my mail box, the laundry room, or the garbage room I don’t foresee that happening any time soon. Most of my friends live in Longview or elsewhere and so visitors rarely come. Yes, I am keeping my mind occupied for the most part with my school work, working through the emotional aspects of being ill, and fighting something that is attacking me that I cannot see, and of course, I have my fur buddy Nicholas to keep me company. I will stop writing for now, and I promise to keep this blog updated once a week to keep everyone updated on my journey.

3 Responses so far.

  1. Rose says:

    Read about your illness. Sounds OVERWHELMING as an understatement. I have ARC …Arachnoiditis…an inflammation of the nerves in my back that causes intense chronic pain.

  2. Jamie Chases Butterflies says:

    I am sorry that you are ill. I am the webmaster…Jamie will probably respond to you when I figure out why she is unable to. Thanks for commenting.

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