Saturday, January 31, 2015

January 31, 2006

This was the day I was diagnosed.  9 years ago today.

I was diagnosed via MRI.  9 years ago today, I underwent my first MRI, this one a back MRI ordered by my doctor, who did not suspect PKD.  He suspected I had a spinal tumor that was causing my back and abdominal pain.   He was wrong, of course, but at least he took me seriously when I told him something was off about my body.

I had never had an MRI before, and, not gonna lie, I found it terrifying.  It was a closed MRI, and I went in head first.




(This picture makes it look like there is a comfy amount of space between the person's body and the top of the tube.  Trust me, that space is not comfy.  Also, I went in further than that, because it was a back MRI.)

There was no button to push, no squishy ball to squeeze if I wanted out, no mirror to see anybody in the room.  I asked the tech what I should do if I panicked and wanted out, and she shrugged and said, "I dunno.  Wiggle your legs.  I'll see that and come back into the room."

And then she left me alone in a cold room, stuck inside a tube.

I breathed.  I hummed.  I sang songs in my head.  I imagined terrible, terrible, terrible things happening to the hospital while I was stuck in the tube, like an earthquake hitting and killing everybody who knew I was down there, or an electrical fire that cut out all the power to the building, so I would be stuck there in a fire AND without any power to the machine to get me out.  Can the jaws of life cut through an MRI machine?



These are not calming thoughts.  FYI.

I've had several MRIs since then, including a brain MRI a week after my diagnosis where they strapped my head into a CAGE to immobilize it before they sent me into that tiny tube.  That was also terrifying, and I knew I had to do some different kind of mental mind games to get through it.  This time, instead of pretending that the whole hospital was going to collapse around me, I tried to pretend I was in a rocket ship, heading to the moon, or the space station.  I read an article once about how astronauts had to stay in a tight, close position the whole way to the International Space Station, so I pretended I was John Glenn, and that this was just another space mission.


Then I accidentally pretended I was a French prisoner, trapped in an iron mask forever.  This unwelcome image was courtesy of the 15 minutes of Leondardo DiCaprio's movie "Man in the Iron Mask" that I happened to watch in high school, to my detriment.



Rocket ship images?  Kinda fun and cool.  French prison images? Not fun or cool, and very unhelpful when you are trapped in a face cage in a tube.

Anyway, that was 9 years ago.  Like I said, I've had several MRIs since, and while they are never pleasant, I no longer need intense mental stamina to get through them.

(I still sometimes pretend I'm an astronaut, though, just because, you know, space.  It's cool.  And I'm kind of a dork.)

More has happened than just MRIs.  I went from a normal BP to needing 35 mg of Lisinopril to keep me from stroking out.  I had an almost flat stomach when I was diagnosed, and last week somebody asked me if I was pregnant.  My husband would often tell me how cute my belly button was.  Now I have an umbilical hernia that often resembles a hard apricot that I have to manually shove back into my body, and I can't do sit ups anymore--doctor's orders.  The disease.  It progresses.

But there are really good things that have happened in those 9 years too.  My daughter was born.  My husband got a new job that moved us to a city that we love.  We got a sweet dog that have taught my children to love animals.  I'm in the thick of learning a new career that is challenging and fun. My children and husband are healthy and thriving, which I know is not a given.

So this life.  It progresses too.  And it delivers rich abundance even on those days when I have to lie curled up in a ball for the pain.  (And just FYI, speaking of Leondardo DiCaprio, "Titanic" is a great one to watch when you are in so much pain you think you might die.  It's boring enough that you don't have to pay close attention, and if you are in enough pain that you are hating the world, the drowning scene is kind of satisfying.)


(And you can also yell things at the screen like, "That ticket brought you DEATH, you stupid git!"  That helps too.)





3 comments:

Sharon Bahr said...

Hi love reading your adventures. I just finished having another surgery to reduce my cysts on my left kidney, cyst decorticating. While my belly looks like a million bucks for awhile my babies evenltuly always cone back home! This surgery went real good so far I was discharged 24 hours later :-). Now back to working on getting strong again to handle my next challenge!. PKD always gives you a task at hand to focus on, lol!

Anonymous said...

I have known I had chronic kidney failure for the past few years, since my doctor informed me that my GFR had dropped to 18 and to get prepared for dialysis. I thought this was very fatalistic so I started researching on my own.

I started following a diet for blood pressure related kidney failure. Two weeks later I had another blood test and my GFR was 21. After two more weeks, my GFR was 23. I was overjoyed with such fast results.

It's been 6 years since my original diagnosis and I now feel that by sticking to my diet and vitamin plan I can hold off dialysis for the rest of my life.

In case you're wondering, this website contains the diet regimen that I know follow:
http://www.journalofnaturalhealth.com/kidneydisease

Hope it helps anyone reading this!

Name: John Williams
Email: johnswilliams82@gmx.com
Website: http://www.journalofnaturalhealth.com/kidneydisease

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