Friday, June 5, 2015

Manometry Update Part II

Well Reader, I woke up again. Pain. Dread.  I still have a tube up my nose. Down my burning esophagus. Will this night ever end.
(courtesy of this poor lady off youtube but had a "professional" nose tapey thingy that I did NOT have.  My Dr.'s Minion used just three pieces 1/8  of an inch thick, of athletic tape. So my Rudolph tape job to secure my tube down was even a bigger sensation than this lady's.  )

This made do that one cry that comes from deep in the gut. And is the one you do when no one else is around. It doesn't last long because no one is there to here you do the three sighed gut cry.

Anyway, I am T minus four hours from having this removed. My stomach is killing. My throat is sore. And I just learned how to spell what they did to me yesterday. Manometry.

To this day I struggle to recall how to spell the D word and I have had Crohns going on 20 years!
It must be a shrink thing.

Actually I sort of refuse to learn any word that has an odd spelling and diarrhea is just odd. It's odd to have it, spell it, have a disease other than the stomach flu..... it, IT. ! Darn it! (Go ahead and swear here if you do in real life but censor yourself on a blog because you are pretending you don't or haven't sworn in real life.
(I can't stop laughing. I am putting in pics days after this and can now do so. Courtesy of these actors and ~ Thanks again, Houston! Great stuff comes outta there, doesn't it?)

 I have to tell how J. reacted when he saw me. He apparently forgot I was getting the tube for 24 hours and so he immediately offered to sleep with me to make sure I don't stop breathin. I told him it would be okay cause I wouldn't be able to get to sleep. He calls me Momma when he is trying to comfort me. The Momma. Which I just realized is something I hadn't written in a journal or something because I will one day forget and he will stop.

I just remembered to punch the button on my little camera to show I am sitting up standing but I am actually sitting. And that is hard enough. My spine feels like the tube is down it. I wonder if my Dr.s minion nurse put it there! Either way I am ready to pull it.


I am feeling like a wimp. Some people have brain tumors and I don't. Thank goodness.

Oh, great! I just remembered: Today is taper day of prednisone! Brilliant!

 I just misspelled that word; brilliant. And was autocorrected. Seriously. Not lying for a laugh. I feel that one cry coming on again.

(Houston Nails it Again!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!)

Anyway, just great! Now I am going to be in a wheelchair for sure! I have hardly handled the taper as it is. And Padre has already said there's no room in the house for a wheelchair so it's off to Promitory Point for me! Grandma was there and the outside looks good but it's all for show. Passed the offices the rooms are mediocre, the beds were horrible, the rehabilitation neglig--- how do you spell negligible? Hey, I got it right.

We decided to jump off the "Prednisone Cliff"  pretty quick to ten by going 1mg per week from 15.
Which is a far cry from my other attempt of 5's. I won't mention the person's name, okay my GI, but that taper had even his other staff mates (collegues but I can't spell it) telling me that was way too fast.

(Ah, man. This picture captures  it, Readers. It is like an extension cord up and up your noz. Thanks youtube, dude.)

REALLY? Is that why I felt I was drowning in Hades? Glad I used my noggin' and made the right calls and got

I can't even think about it. Back to J. because he is more fun and makes me laugh. I snapped a selfie for a fellow Crohnie and he saw it and said:

"Do you realize how cute you are?"
as he grabbed me by the neck and pulled me to his chest. Which hurt, Reader. And I winced.  but ya make allowances for your children right? And I let him hold me there as my spine took part in the leaning action of hugging my son.

I don't know if he truly believes the fake and sarcastic smile I had in the picture is really cute or if he is saying that so I don't feel bad that I have greasy hair, no make-up on which reveals the scars and acne that I never dealt with through puberty. My cheeks are very red due to the broke vein muscles due to the Cushings, Crohns, and prednisone attacking the smooth muscle that lines the inside of our veins and blood vessels. And I am wearing a pink I heart New York shirt on to sleep in. Thanks for the shirt, Care.

Readers, this is what can now replace what I went through the last few days. Many of you have had the tube and might be thinking I am a woos. Please, Reader know I had been in pain and bloated due to my esophagus being narrowed. - A stricture that went unnoticed. Blood tests don't find it. Doctors in the ER didn't X-Ray when I would go in. It was missed until a P.A. caught it on X-Ray.
She believed me. She believed something was wrong.
And she was right. I was choking and gaggin. Aspirating food into my lungs. Time was of the essence. She didn't expect an ER visit to only be for some person who had a Bear attack and his leg was hanging off as the only emergency to walk in that door.
She thought my injuries and pain through. She put one piece of that pain puzzle together.
The new kiosk to make things faster ask you why you are there- there are only 9 options and sometimes you have multiple reasons and places, and then the volunteer punches in something as you ramble off what you are needing help with and it ends up that the doctors are just going to go with the kiosk answer instead of the looking at the whole picture.
She is an answer to prayer, Readers.
I want to thank her. But how?
Then, with the help of a respected, retired doctor I was in getting scoped and it was opened up.
However, I have hurt since then but the bloating has gone down. I don't look like Kate plus 8.
I still sound funny. I have talked like a man named Boyd K. Packer who is what we call a General Authority in my church- The Church of Jesus Christ of Latter Day Saints.
Not kidding fellow Mormon Readers. Non Mormons but fellows on this blog journey, stay with me here.  
He is one of the 12 Apostles.
I don't know why his voice is gruff. Mine is due to Cushings and the acid scarring my throat, I guess? 

hangin on,

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