our headbangers ball

I just returned from my 8th or 9th CT scan. I think I’ve had one or two every year since the car accident. But I’m not sure  how many due to being unconscious for a few of them. Dan teases my by saying ” they still can’t find that cat?’ He is so good at putting humor into everything I have to go through and making me smile. I have treated myself to breakfast at Crumb Bros. I am sitting here enjoying my treat after fasting  and drinking ick that makes my insides glow and thinking about what to write in my blog. I am also thinking how lucky I am. When the scan was completed I poke my head around the corner and look at it with the technician.  Of course he can’t say much, other than echoing what I state that I already know about. I can read x-rays, so we look in detail at my insides. Noting the rise of my diaphragm on the right side. It looks like a question mark laying on its side. The high part being the damaged side. You can see that it’s pushing on things. Done with my unofficial diagnosis, I will wait for the doc to call me.

You see, my insides are all stuck together with scar tissue. My liver is stuck to my diaphragm, which is stuck to my lung and for some stupid reason it is rising up towards my lung and pressing on it. You would think that gravity would work the same way as it does on every other body part, like my boobs for instance.

So every breath I take is painful. My diaphragm is paralyzed on the right side and so I use my neck and chest muscles to breathe. I can feel pressure and stretching with each deep breath. So for that reason I forget to breath. I find myself taking these short, shallow, panting breaths to avoid the pain. All these shallow breathes don’t help my anxiety at all. I constantly have to remind myself to take a deep breath.  Slowly I breath in and out like a normal person would. Welcoming the air but hating the pain. It doesn’t feel normal to me. It feels unnatural, more like an exercise. But we all need to breathe, so I do. Big cleansing breaths until  I forget again and pant. I try to hike and walk a lot to keep everything stretched and working. Dan is my  encouragement king. He patiently waits for me with a big, cute smile on his face because I have to stop often and catch my breath. Most of my memories of our hikes is me looking up at him, waiting for me. It was a lot farther in between breaks now than it used to be. But now I am going backwards and not making so much progress. It hurts more to breath and I am out of breathe just from walking up our stairs.  I also have moments when the scar tissue is tightening its knot in the form of painful muscle spasms that leave me breathless with tears in my eyes.  They are getting stronger and more frequent. That is why the Dr. wanted another CT scan.

I have hand-picked a few Dr.s by interviewing the staff on the phone and then the Dr. at the first appointment. You would not believe how many providers out there really do not know what to do with me, but will fake it until I find them out.  I realize, after all, that Dr.s are human and that I am responsible for my medical care. So I keep lots of notes and talk with people I trust like Dan or my family. I keep copies of all  reports in a file and make sure all Doc’s involved have a copy also. Let’s see, to date I have a wonderful general physician, a neuropsychology, a thoracic surgeon, a cognitive therapist and a speech therapist.  Dan plays a huge roll in all of this too. Together all seven of us try to keep my quality of living the best it can be. So I can enjoy my second chance.

So, the report is back to the General physician and now on its way to the Thoracic surgeon. I’m just waiting for him to call me. We agree on many things and one is to try to avoid surgery because it only causes more scar tissue wich increases the problem. A surgeon separated all my stuck together parts a few years ago, but it only lasted a few months. Breathing was so easy and wonderful during those weeks. In fact the first thing I said to my mom when I woke up afterwards was “I can breathe!” But it’s probably not worth having surgery for a few months of relief. So we will wait, discuss and decide. In the meantime I will keep on keepin on and enjoy my hikes and walks with Dan.  It’s amazing what you can accomplish just by sticking one foot in front of the other.

~ by gonefishindd5 on April 14, 2010.

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