Wednesday, October 1, 2014

GP Fighter - Emma

"Don't give up, continue to strive for your goals."
 -Emma Tillman

A couple years back I read a fascinating research article about TPN that still to this day I often think about.  Little did I know I would soon meet the one who put it together, hearing her speak not on behalf of this particular research, but her own recent diagnosis of gastroparesis and how she continues to not let obstacles get in her way. 

Growing up, Emma Tillman, a clinical pharmacist who now lives and works in Tennessee, struggled with bouts of cyclic vomiting.  This could go on for a day or so but then would often subside for weeks, sometimes months at a time.  There were periods when these episodes increased, particularly around times of stress.  While attending college she would need to receive IV fluids at times when things got bad.  Then one day, the Sunday following Thanksgiving of 2011, the vomiting didn't stop. She quickly lost 30 pounds.  Like most of us, Emma went through the ringer; of testing including labs, ultrasounds, CT scans, and the gastric emptying study (GES), which eventually led to her diagnosis of gastroparesis.

Tuesday, September 16, 2014

3rd Annual Awareness Walk for Gastroparesis a Success!


Surrounded by many others living with gastroparesis, our friends and families, and a booth of beautiful chaos, my dear friend Angi pulls me aside.  "Stephanie," she gasped, "this is amazing!"  She quickly recalled where we started 3 years back - myself and a few incredibly supportive friends, with an idea to raise money and awareness for a condition few in my community understood.  We looked around the corner of the busy farmer's market, and how many were gathered.  Unlike the 1st year with mostly just locals to support a small event, we now saw large groups of others with GP, some meeting for the first time, bonding over challenges, similarities and a strong passion to advocate for our cause.  A sea of awareness T's, hoodies and tanks, green jewelry and ribbons in our hair.  Okay, perhaps more of a pond, but still, compared to before, it felt like a sea!  In fact, my head was swimming between all the new friends I wanted to learn more about and others asking questions regarding donations, awareness items, auctions, raffles, and handouts.

Thursday, September 11, 2014

Gathering My Spoons and Recharging the Batteries

Do you ever just sleep for a couple days and not feel one bit guilty for it?  I am so, so very glad for permitting myself to do this and don't feel a moment was wasted.

There is a popular idea called the Spoon Theory, which helps to explain to those who may not understand our limited resources for energy, why we only do so much.  So according to that logic, my spoons were long gone, though I had yet to realize it.   

My office looked like a tornado flew through the room by Saturday evening, once we unloaded everything post walk.  Green glitter, piles of educational handouts and auction bids, boxes of leftover awareness items and Orgain (giveaway soon!) and a stack of money needing to be recorded.  My head was spinning from all the people I had a chance to meet, more GP'ers in one location than I ever thought possible. It was inspiring and empowering, all of us together, understanding each other like not many can.  Yet it was overwhelming to manage the event smoothly, making sure questions were answered and everyone was being taken care of.   Someone who is not sick would probably be tired from this.  

Sunday came and still high on adrenaline I joined T and our 2 dogs out on the boat for the afternoon.  Funny how car rides can make my tummy twirl yet being on the water doesn't seem to affect so much (knock on wood).

Monday and Tuesday were spent catching up on work emails and wanting more than anything to share with the world updates and pictures from the walk.  There is still an inspiring interview from a GP marathon runner I have yet to share (sorry Emily, I haven't forgotten!), Orgain and book reviews plus giveaways, the latest research, and so much more.  By Tuesday night my head was swimming with to do's but I knew I had to put them off and rest.

For someone who is healthy, day to day tasks such as work, family, cooking, cleaning, school and so on, can be very tiring at times.  Someone living with a chronic illness, it's like sucking the life out of us, like a battery that has died and no longer provides the power to simple stand up and walk across the room.  If you've experienced this then you know exactly what I mean.  I have a tendency to pretend I'm "normal," try to live my days like others by waking up early, exercising, working, cooking, cleaning, errands, gardening, socializing, what most call living life.  

A rude awakening came crashing down Wednesday morning, or should I say not awakening.  I tried to walk into the kitchen and felt like I was towing around heavy bricks.  Once I began to drink some tea to try and wake up, it dawned on me.  This is not just morning grogginess, I need to go back to sleep.  Without a second thought I slowly made my way back under the down comforter and it felt cuddling in to a bed of puffy clouds.  No time to even feel guilty, I was out like a light.  
Hours passed, waking every now and again for a brief moment only to immediately fall back in to a deep comatose like sleep.  


This went on until evening, when I woke for a small dinner and movie on the couch.  Worried I wouldn't be able to sleep through the night I slid in for a nice, hot Epsom salt bath.  Nothing to worry about there, I was like jello sliding back under the covers for an entire night of more sleep.

Today is a new day and obviously I am awake and functioning (feeling somewhat recharged).  Moral of the story: Try your very best not to use all your spoons in one day.  If you do, some days it can't be avoided, then allow your self to rest and recharge.  It's okay, we need it and deserve to feel our best.  

It's bedtime, again, and once my spoons are fully reloaded I'll be back to share some exciting stuff, such as the GP Awareness Walk, which in fact was AMAZING, so please be patient!  I'm still gathering pictures, orders, crunching numbers and so on. 

Sweet dreams, may the spoons be with you.
Stephanie





Monday, September 1, 2014

Blendtec Winner


Congrats Cindy B., you were picked through the random generator to receive a new Blendtec!  Look for an email/FB message with details.

Thank you everyone for the donations so far.  Packages with GP Walk wear and jewelry will be shipped tomorrow morning and should arrive no later than Friday so you can participate from afar on the 6th.

Those of you attending the walk, a 2nd chance for a Blendtec will be happening at our booth and your orders will be waiting for you and look forward to meeting you all very soon!



Monday, August 18, 2014

Tummy Gummies - REAL Food Recipe

Last year I shared a recipe for GP Gela-tea, a simple and soothing treat to have during a liquid diet or even just to snack on for some extra easy to digest nutrients.  As I wrote previously, it is shocking to be in a hospital for stomach problems and then be served coffee, Ensure (which has always made me worse) and jello.  The jello we are used to seeing, the neon red and green food most of us grew up on, is loaded with sugar, artificial flavoring, and color, all of which can possibly wreak havoc an a sensitive tummy.  
My own version, using herbal tea blends and gelatin I trust, was just what I needed when not feeling well.  Now I would like to share a new recipe using REAL fruit!

Saturday, August 16, 2014

A-Wear-Ness Blendtec Giveaway #2!

With only a few weeks left before our 3rd annual GP walk, it's time to share once again one of my favorite, most generous sponsor's, Blendtec.  Just like last year they have donated 2 brand new blenders, each retailing at $500.  One of these will be up for the silent auction during the event on September 6th.  The other I would like to give you a chance to win.

Monday, August 4, 2014

Alive with HPN: A Life to Adjust To and Making the Most of It

I would like to take a few minutes and talk about TPN, how it has affected my life, and most recently the work I do.


Not only is August Gastroparesis Awareness month (which we are currently raising funds for), but August 3-9 is HPN Awareness Week.  HPN, TPN, what is all of this you might ask?