Saturday, June 4, 2011

Our Story Continues....

Deep inside, the woman knows she's NOT crazy. "How could I have made myself stop breathing while I was UNCONSCIOUS?" she asks.

These doctors send her home with anxiety medication and pain pills. They send her home to die.

Nine days later she is back at the ER of the University hospital unable to swallow. She tried taking her medication at home, but it came out her trach. She can barely breathe. Her facial muscles are completely paralyzed by the time she gets admitted to a room some 12 hours later. She can't even close her teeth together.

Providentially, it is a new calendar month, and the woman is blessed with doctors whose tenacity has thus far been unmatched. One very good doctor with kind brown eyes looks at her and says, "We WILL find out what's wrong with you."

The woman believes him.

Four days later, the doctor delivers on his promise. "We have it narrowed down to 2 things." The woman still cannot speak because of the trach, so she writes, "?"

The doctor with the kind brown eyes looks away for just a moment. He says, "You either have Myasthenia Gravis, which has been suspected, which is not curable but it is treatable. Or you have bulbar palsy. It is degenerative and terminal."

The 29 year old newlywed sits in shock as the words "degenerative and terminal" reverberate through her mind. She can't really wrap her mind around what is being said.

She can't catch her breath. She can't speak. Tears well in her eyes, and she tries to pray. No words form.

The doctor tells the woman that they will continue treating her for Myasthenia Gravis (MG), and if she continues to improve, that's likely what she has. If she does not, she has bulbar palsy.

The woman is discharged shortly before Christmas. Will this be her last one? No one can say.
She still has a feeding tube, a trach, and a broken heart.

As most of you have figured out by now, I am this woman.


The Jammie Girl said...

Thank you for sharing your story! My medical issues are nowhere near as complex or serious as yours, but I do know first hand what it's like to be told "It's all in your head." and find out later you have a serious and treatable medical condition. My hope is that someone out there is reading your story as thinking, "Maybe my doctor is wrong and I need to keep searching for answers . . "

Rachel said...

Thank you for sharing such a difficult time with us...One can only imagine how frightening the whole situation must have been!

I remember my first weeks, I thought it was in my head, too much stress, and a host of other things going on. I said to my doctor maybe I was having some kind of breakdown. He was so reassuring, he said IT WAS NOT IN MY HEAD, WE WILL FIND OUT WHAT IS WRONG!!

I have been blessed from the very beginning with kind, compassionate, caring, and knowledgeable medical professionals in my life. For this a will be forever thankful.

Your words have been so helpful to so many, I can't thank you enough!

Kim @ Stuff could... said...

Wow this is a tough time for you and at 29! Thanks for sharing and yes we know the all in your head stuff. Anxiety is it :) Wish it was that simple....

Patty Ann said...

Thank you for sharing your story. Thank you for being brave enough and amazing enough to tell the rest of us what your trials have been. I can't imagine how frightened you must have been. I hope that you know how special you really are. You are an amazing woman.

Kerri said...

Jammie Girl, that's EXACTLY why I do someone else can MAYBE be spared a bit of what I went through. AND, to encourage people that chronic illness doesn't have to win.

Rachel, You're are one of the coolest people I've Never met. (ar ar) YOU encourage ME a lot. Love ya.

Kim, yes, if only it WERE that easy!! Thank YOU for sharing your "stuff" too!

Patty Ann, you never cease to make me smile, even if it's through tears. You are a special woman and I'm so thankful we met.

Gaspegirl said...

Wow! You are a lady of great strength and courage! I know how you felt when you were hoping for a Dr to validate that you were sick, I have been there! I have had Dr.`s tell me it is all in my head when I KNEW it was real... I feel for you!

(((hugs))) to you and your family! So glad I found this blog...

Tiffany said...

I can't even begin to imagine... thank you so much for sharing your story and your braveness.