Sunday, February 5, 2012

Remembering and Sharing: Past and Present

This week is a bit of an important one, though not in ways I'd like to remember.
Its the annual feeding tube awareness week, and during last years I received my first tube and have been tube fed or TPN dependent ever since. (3-4 months TPN, the rest tube feeds gratefully.)

That was a rough hospital stay, I'd arrived the week before and had an interesting experience my second day due to the type of mitochondrial disease they felt I had (my blood showed a 40% large deletion, but low heteroplasmy of the mutation.  It turned out to be nothing but at the time it was thought to be groundbreaking!).  I wrote about it shortly after I was discharged, here are some pieces from it:

...That morning after an extensive neurologic exam, where all my abnormalities seem to be magically noticed, I’d heard the fellow whisper that I might be a good candidate for "the conference". [30 people mostly in a larger room, some video conferencing in]  Soon I was asked if I would like to come to a meeting with many doctors to have my case presented and discussed to see what other ideas the forum had.  I asked a few questions, felt a bit hesitant inside, but intrigued so I agreed.  I later said to my mom, “I can’t complain about lack of awareness and understanding if I’m not willing to educate.”  Not that I meant to teach them about mitochondrial disease or POTS as far as the books go, I mean educate as far as invisible disease and odd cases that don’t make sense but in the end have a real cause... ...After the fellow gave a information packed introduction on my history, my medications, and my diagnoses I was asked to come forward and answer questions, share my story, and explain my symptoms.  A few moments in somebody spoke up in the back, they couldn’t hear me and I was wheeled over to the head of the table where a triangular mike sat. I began, doing my best to answer as directly as I could...I was asked about in great detail my strokelike episodes and my POTS episodes: how they started, how long they lasted, what they felt like, what triggered them, how my migraines tied in, and what my episode this time was like versus other episodes.  I showed them what I could do with my right side versus my left.  It was weird to do it for this strange man I’d just met in front of dozens of people, with my two favorite doctors in the audience! ...The minutes kept ticking by, I felt quiet inside, but definitely weakening.  I struggled to keep my head all the way up and eyes wide open, my left side slumped.  I took a few deep breathes and straightened best I could in time to see  my mito neurologist whisper to my main attending, “She’s getting tired.”  [She always knew, even if she wasn't looking directly at me, if I was beginning to crash.]  Nobody else seemed to notice...they talked on and continued their examinations.
It was an interesting experience, and it made me feel very strange.  My attending came to see me later, and we agreed "fishbowl" was the best way to describe it.  She also made the hard decision on the feeding tube, coming to see me every day of those three weeks (and calling the day she came and missed me!) even though she only was in house for the first one.  That's an awesome, dedicated doctor.

Today was a good day.
If you were a fly on my wall you'd not understand why I said that perhaps.  I'm obviously not feeling well today and in a bit of a battle with this body of mine.  But good days come in all kinds of bottles, you have to read the message before you judge it.

First, I went to church.  I haven't been in a month!  I am usually about 3 feet inside the door before I see somebody I know (we have about 1500 or so in our congregation, spread over 2 services) ready to give me a hug.  Today it was my friend and fellow horse lover!  She and her husband are just awesome, and if you ever want a caterer she is the finest.  Not long after, our senior pastor and a man I am so honored and grateful to have in my life comes at me: arms wide open with the biggest, most surprised smile that just made my day.  I can always count on him to be there for me, whether I'm in our local hospital or at home and need prayer.  The hospital staff can never believe he's in ministry-yup thats him!  He actually said today that he likes it that way, likes that he can just be who he is.  I admire that so much.

Church itself was wonderful, I always particularly love worship time.  As we were singing "Running to Your Arms" I noticed that somebody was standing.  She uses a cane to help her walk, and always looks to be in pain.  My heart lifted seeing her standing tall as everyone sat, praising Jesus so openly and deeply...
Heaven is going to be amazing - I prayed that everyone I know might know His love and gift!

I rested for awhile once we got home, and since I have wonderful understanding friends one of my closest friends waited til I had lied down for awhile before coming over, not complaining even though we'd had a date set up a few days earlier.  We had a lovely time sitting around laughing and reminiscing, and then playing a board and Wii games.  I'm so glad she's still around, we grew up together and spent more hours running around like little indians than I can count.

Now, since I've been lying around all evening, I'm thinking its time to go torture myself with meds in this feeding tube that I AM blessed to have until a skype date with my DTP and tubie friend Kim, who is quite the young woman!

Thank you for reading and sharing in my experiences, it is healing to share them.

God bless,


  1. Thank you for being who you are and being so supportive to us all!

    1. and thank you for being such an amazing friend!