Hi Friends!

       I survived the torture chamber! ;)  I had some symptoms during the tilt table test, but they definitely weren't their worst.  I was pretty much covered in medical wires/equipment, laid flat for 20 minutes while they probed/massaged my juggler veins to see if that affected my heart response.  I was tachycardic (heart rate over 100bpm) while I was lying flat.  Then they stood me up for 40 minutes, the last 20 minutes being them having me bear down, take deep breaths, hold my breath, put my hand in ice water and sloshed it around (Raynaud's did NOT like that one......OUCH!), and then gave me a medication to speed my heart rate up which does NOT feel very good when your heart is already racing.  After the test, my electrophysiologist (EP) came out and gave me the results.  I have, as my EP called it, "POTS' cousin" - Inappropriate Sinus Tachycardia (which just sounds so wimpy for what it causes! ;))....a few long words to pretty much say my heart is running a marathon even when I am resting and sleeping.  The POTS (postural orthostatic tachycardia syndrome) is caused by posture, but this just stems directly from the heart rate.  You can learn more about it from Dysautonomia International here (http://www.dysautonomiainternational.org/page.php?ID=228).  They say it affects 2.1% of the population.  Anyways, I'm supposed to up my fluid and salt intake, wear compression as tolerated, and she prescribed a low dose medication called a beta-blocker to try to help get my heart rate under control.  We're hoping that it won't cause any mast cell issues and will give me some relief.  If we get passed the mast cells, we have to balance the dosing where it'll stabilize my heart rate without dropping my blood pressure too much.  I was knocked out after the test...drifting in and out of sleep from utter exhaustion of the testing plus some mild reacting to the medicine they gave me to speed my heart up.

Mom, Ezra, Christina, and I
on the carousel :)

Christina and I on the carousel
(and Mom photobombing ;))

I had a little peak where I felt fairly well later in the afternoon after napping and resting.  Since we were already in Durham, we went to the Meadow Lights in Benson to see Christmas lights.  We rode the train and the carousel and then went through the little candy store.  It was a lot of fun, but my body was screaming "enough is enough!" by the time it was done.  I got up at 4:00 in the morning, went through the terror testing, rested for a few hours, and then put my body through another round of chaos in the evening.  It was worth the second part, however, I could've skipped the first half of my day! ;)  I'm glad I at least have that tilt table test behind me now!

Ezra and I riding the train.  He wasn't very thrilled about it...
he is terrified of metal!

Thank you for your prayers!  Please continue!
Allison

Tilt Table Scheduled

Hi!
   Just letting you know...my tilt table test is scheduled for 6:00am.  Please keep this a matter of prayer!  I'm usually worse in the evenings so 6:00am was a bit of a bummer, but we know Who is in control.  I've developed some autonomic symptoms throughout this evening so at least that's encouraging!  I really need this test to be accurate!

Allison

A Tube Change, A Niece, & A Tilt Table Test...

Howdy!

    So sorry for the delay in my updating!  The tube change went well.  The tube was still in the right place and I confirmed that after seeing the images.  I tried my formula mixed at half strength and running at half the rate.  It is doing well that way.  I continue to react to my meds.  It could be the temperature of the water that is causing a reaction instead of the meds themselves.  I'm really hoping that is the case!  Finding new meds is a lot more difficult to handle.

Holding my little (ahem, BIG) niece, Vivian Ruth Workman.
(Look at her hair!!!)

Yesterday was a very eventful day....  My niece, Vivian Ruth, decided to meet the outside world! :)  She came weighing a whopping 9lb 4oz and was 21" long...she is huge for a first baby!  She is having a little bit of a rough start so we would appreciate your prayers for little Vivian and a smooth recovery for Joanna (aka "Mama").  She has already grabbed our hearts and I look forward to watching her grow.  We didn't get back home from the hospital until about 1:30 this morning!

I will, Lord willing, soon be leaving for Durham.  Tilt table test is scheduled for tomorrow.  We have to call between 3:30 & 4:30 this evening to find out what exact time they want me there.  They don't give us a scheduled time until that point in time.  I would greatly appreciate your prayers that I will have symptoms that show the problem throughout the testing.  Even though it's been rocky lately, my autonomic system isn't acting up all that much.  Go figure!  I really don't want my health to be absolutely superb for this testing.  And then, once the testing is over, I really want a quick recovery for Christmas activities...it's not quite the same when you're miserable! ;)

Thank you so much for your prayers!
Allison

Feeding Tube Change

Just letting you know I have an appointment at 10:30 this morning to get my feeding tube changed.  I'm more positive than ever about this tube not being where it is supposed to be.  When I drink hot chocolate (my own recipe/concoction) and can immediately drain it from the part of the tube that is supposed to be in my intestines...yeah, there's a teensy bit of an issue! ;)  I'm hoping all goes well.  Please pray that they will change the tube and not make a fuss about me having J tube surgery.....and that I'll get the best radiologist.  There are at least 2 that I really don't care for - one is very cocky and the other is insistent on a J tube.  Take my word for it, cocky doctors changing feeding tubes does not make for a pleasant time of it!

Hopefully I'll have good news about this situation later!!
Allison

Catching Up

Hi Friends!

     I have so much to catch up on.  It's crazy to think I haven't written since Thanksgiving!

Me and Ezra at our local Christmas parade...
matching antlers and all! ;)

I guess the first thing would be the current situation... My feeding tube.  I've been having a lot of trouble with it and finally had it checked yesterday.  They said it was even farther in place than it had been (which, I might add, makes no sense) even though they didn't save an image of the last time.  It was all here say from the radiologist that had manipulated it last time.  They can't use dye so nothing is ever for sure.  99.9% of the time I am right on it being misplaced and I'm 100% convinced it isn't in the right place right now.  Everything points to that.  I'm working on getting something done about it.   Upon my hematologist's nurse's instruction... we called my GI's nurse and left a message, asking to get either a tube manipulation or tube change ordered.  When we didn't hear back within a reasonable time to get it done today, we were supposed to call my hematologist's nurse and she will take care of it.  So we have contacted my hematologist's nurse to hopefully get it taken care of today.  I feel like I'm between 2 evils right now.  Radiology is one and leaving it be is the other.  I'm afraid of what the radiologist may think/say, but I'm afraid I'm only going to get worse if I leave it be.  I greatly need your prayers that they will see that it's indeed out of place and be able to fix it!!

My PICC line had been doing great until Saturday evening.  The stitches became painful, red, and slightly inflamed.  I had my dressing changed yesterday and one of the stitches has gotten worse and is following the same track as before when I was reacting to the stitches.  I'm afraid the constant triggering from my meds not going into the right place via my feeding tube is making this worse.  It's just complicated.  I'm thankful I got to enjoy our church's Christmas cantatas, though! :)

My tilt table test at Duke is now scheduled for December 22nd.  So, as long as all goes as planned, we will be leaving the 21st and coming back the 23rd.  Please keep this a matter of prayer!

Bella, me, and Ezra.

Ezra with Bella sitting under him. :)  I LOVE
this picture of them!

 I've gotten all of my Christmas shopping/wrapping/mailing done!  I got my Christmas pictures taken, cards made, and got them to their destinations.  Now I'm just enjoying counting down the days!  Today is my niece's due date.....hoping she doesn't decide to arrive while I'm at Duke!  I'm sure my brother and sister in-law would appreciate your prayers for a smooth delivery and a healthy baby! :)

Hannah Rose Humphris
1996-2015
(This is my favorite picture of her...
She looks like a princess!)

I've thought a lot about the people we have on a daily basis who we take for granted.  It's coming up on 2 years since I lost my dear friend, Hannah, whom I nicknamed "Gumby".  Some of the very things she would say that would drive me absolutely nuts are the things I miss the most.  I would give anything to have her call me "dramatic" (her way of saying stop worrying/chill out) again.  Cherish those moments even when someone is being totally annoying because you never know when that day may be that you would give the world for another moment like that.  I, too often, find myself "wishing those moments away" and impatiently waiting for it to be over.  It hurts as if it were yesterday that I found out she was gone.  I texted her that dreadful day...I guess I was just in denial that she was actually gone.  I wanted to tell her, one more time, what she meant to me.  I wanted to just hear once more that she loved me.  I still have yet to receive a reply.  I would give everything to have one more moment with her.  Hug the ones you love a little tighter today...show them how much you love them because you never know when that day may come when you never get a reply to that text...you never hear their voice...they no longer share that laugh with you.  Forgive today.  Do that one thing special you've been planning.  Love them a little extra.  I will always cherish the (all too short) time I had Hannah as my friend.  I miss you, Hannah...I hope you have a wonderful Christmas in Heaven! :)  If I could send hugs to Heaven you would get 5 packages every day! <3

Thank you so much for your prayers...please continue!
Allison