Another New Year - The Good, the Bad, and the Motivation to Get Through It All

"When it is obvious that the goals cannot be reached, don't adjust the goals, adjust the action steps."

-Confucius

Another year has passed and tomorrow we start again.  Around this time, at least in the last 8 years, I've said to myself, "This will be the year, I will find an answer, a way to finally feel better."  That is always the New Years resolution...feel better.  And then what immediately follows, "What if this is my best?  What if I can never eat normal again or get off nutrition support?"

It's human nature to compare ourselves to those around us.  I realized this during my first yoga class, my freshman year of college at Wichita State. Yoga with Flo - yes that was her name and that is exactly how she moved, even at the age of 70 (and she still teaches, my dad took her class at the YMCA!). She would always remind us we are exactly where we need to be at that moment.  "Wow, I'll never be able to fold forward like that", I thought.  A lifetime of tight hamstrings and bad posture made touching my toes seem impossible.  But it was through training of the breath and the mind, that whenever I so badly wanted to be as flexible or graceful or athletic as the person next to me, this was who I was and exactly where I needed to be.  Don't get me wrong, those thoughts creep in but I learned to acknowledge them and understand my own realistic determination.  Fast forward 5 years to a hot yoga studio in Bellingham, WA and it happened, my fingers actually wrapped around those wobbly, big toes and a bolt of accomplishment shot through my body.  

Though I long for the days of a yoga routine being life's biggest challenge, the memory reminds me of similar emotions we all go through.  When the future of wellness feels like asking for the moon and stars.  It seems incredibly impossible, unrealistic.  But I won't give up.  By that I mean I won't let the myriad of challenges stop me from dreaming and living the best I can.  

2014 was a crazy year.

• The temporary PICC line in my arm became a more permanent central line in my chest.  I'll share more about what a daily routine on TPN looks like in the future.  For now, know that it takes time, patience, and being more careful with your body than you can ever imagine. 
• I started a new job as a Nutrition Consumer Advocate for ThriveRx.  It's been an absolute blessing to work with others around the country and help to educate and support people also living on tube feeds and/or TPN.
• For a short time in the spring I actually felt better but it was short lived.  Despite eating more, weaning down to 4 nights of TPN resulted in a near 10 lb weight loss.  Back to 6 days and maintaining. 
• 3rd annual GP walk in September was a success, more GP'ers showed up than ever before!
• Participated in the Bellingham Traverse on the kayak leg with my husband.  Challenging but after having so many procedures, tests, tubes and lines, I felt like anything was possible.  Days of sleeping followed this race but it was worth it.  
• Traveled to California and Kansas to spend time with family, good and bad days but again, so worth the effort.

I continue to struggle with severe pain at times, bloating, chronic constipation, fatigue, dizziness, and the ability to eat enough.  To most people (nearly everyone) this is mostly invisible, so on the days I'm not strong enough to handle it or I turn down invitations, trust me, it's me not you.*

Balancing the bad with the good keeps me going and what I suggest to you as well.  Find what brings you joy, even in the smallest of things.  Short walks, time with friends and family, helping others, big goofy dogs, learning to accept help, good books and movies, they all bring me enough joy to make it through the day.  

As far as resolutions go, and I always say this, but I really do want to write more, both here and one day in a book.  So much to share but motivation and routine is the key. 

Hope to see more of you in 2015 and wishing everyone a "better," healthier, happier year.  

-Stephanie


*Added Thoughts - January 1st, 2015

This post was written the morning of New Years Eve.  With plans to join good friends to bring in 2015, I ended up having to take my own advice about turning down invitations.  It actually started with T not having a voice post Seahawks game so it wasn't just me this time!  However, not wanting to disappoint the people I love is probably the hardest part about backing out.  My stomach took a dive in the afternoon, draining any energy to get dazzled up for a party.  Following 2 days plus the morning of feeling pretty good, it's so hard to explain the sudden change (even we don't get this).   My request is that people understand how challenging it can be when not feeling well to not only socialize but to also be around food and/or drinks.
Missing out is upsetting to say the least but we made the best out of it, cuddled with the pups, made some tea and watched How I Met Your Mother for some laughs.  I was in bed by 11pm but T came in and for a midnight kiss and opened the shades so I could see the giant explosion of colorful fireworks right outside our window!
Resting today and again, looking forward to better days ahead for myself and all the friends I have out there who can relate to this life.
-Stephanie 

Baked Breakfast Sausage

In the last post I interviewed Crystal Saltrelli for her new book Eating for Gastroparesis, to which I promised to share her and her families favorite recipe - Baked Breakfast Sausage.  Of course I had to experience it myself so last week I made it exactly as she shared on the book cover, served with her Quick and Easy Pancakes (pg.92) and added a small serving of Daily Green Juice (pg.94).  The recipes were all quite simple and the best part was that it made enough to freeze for last minute meals in the future.

Eating For Gastroparesis: Book Interview and Giveaway with Health Coach Crystal Saltrelli

“There is no one-size-fits-all diet for gastroparesis.  But there are a set of effective guidelines from which you can develop your own gastroparesis-friendly diet.”

- Crystal Zaborowski Saltrelli, CHC

On October 31st I had the pleasure to talk with Crystal about her newly released, updated version of Eating for Gastroparesis.  I have to say I was quite excited to read new tips and gluten, dairy-free and mostly low FODMAP recipes-something I hope might benefit others out there with digestive troubles or, at the very least, encourage experimentation.  Due to my own multiple food sensitivities it was a relief to have some new ideas for navigating meals! 

After reading the book in one sitting, I learned more about Crystal's own journey and at the same time, received additional tips and general information for eating well with GP.  Not only this, her book goes beyond food and discusses some of the other aspects of our lives that fall into play when managing GP.  I highly recommend anyone struggling or looking for some fresh ideas to read this book and give the suggestions a try.

This is quite a long post but goes over everything we talked about from her original diagnoses to experiments with food, working with clients, recipes, and her number 1...well perhaps 2 or 3 pieces of advice.  Also, at the end I’ve included a yummy recipe from the book and a chance to register to win a free copy of Eating for Gastroparesis!

Setbacks: Slowing Down to Catch Up

Do you have those times when the more you try to get ahead, the further behind you get?  Those bumps in the road when you least expect them?  You would think by now I've gotten used to them; to plans falling through when you so badly want to join the world, to feeling great one day and waking up ill the next, to having a perfectly working central line to getting caught on a cabinet and going in for another procedure.  And to promising blog updates, interviews and giveaways, yet the words don't appear.  

Following a new central line placement 2 weeks ago, I was sore and frustrated, a reality check that there is a fine line between being healthy and everything falling apart.  This week, after experiencing non GP related symptoms, came to find out I had a UTI. My first one ever, which I know is uncommon.  The doctor prescribed antibiotics, which in the past have been a HUGE setback resulting in weeks/months of increased digestive trouble.  At the end of day one I had terrible abdominal pain so the doctor prescribed something different, an antibiotic in powder form to take with a glass of water.  Still, this freaked me out.  After some careful research and talking to other women with GP who have been in the same boat, I decided to try a recommendation of D Mannose.  It's now day 3 and so far things seem to be getting better!  Crossing my fingers it works and will check with the doctor next week just to make sure.  

Oh, and mom, I know how nervous this will make you but try not to worry!  

There it is, truth be told, unexpected things have come up, life just happens.  And just like it says above, "with that she realized the only control she had was how she chose to handle them." 

So, with that, I want to say that yes, I do have lots to share and still plan to do so here soon!  The last couple weeks have been dedicated to my own self-care, something I seem to slack on (talking the talk but not walking the walk, you know what I mean?).  To me, this requires less time on the computer/FB and more time resting, exercising, and having fun in addition to working from home.  I signed up for Crystal Saltrelli's living well program which is in it's 2nd out of 14 weeks.  Ideally I would like to write about my discoveries along the way and will try to do so as we go.  

The focus of the program this week was The Stress Response.  After the fear surrounding a new central line placement (which by the way went just fine aside from the soreness) and the belief that I have failed somehow in managing GP because I'm on TPN, this couldn't have come at a better time.  Though I thought I knew everything there was to do when it comes to these situations, I've learned a lot about myself by filling out worksheets that show what parts of my life I do well in and what areas need working on.  For example, socializing and support are strong points, I have more than I know what to do with!  But actually taking the time daily to slow down and work on relaxing, whether it be through yoga, deep breathing, reading a book, etc, I think I do that often but since last summer I really don't (the secrets out!).  Lately being distracted, busy and productive are my coping mechanisms.  

Could slowing down and getting back to creativity and joy help in the long run?  Perhaps possibly lead to the ability to eat more and have less "bad" days?  I'm not sure but I do know that there were times in the past when I thought the GP was going away so that relishing in that feeling keeps me going.  It certainly can't hurt to try.  

Now to wrap this up, I'll be back soon with an interview from Crystal about her new Eating for Gastroparesis Book, which is actually not ALL about eating, a recipe to share and a book giveaway.  In addition, the Orgain is still hear waiting to be given away so that's coming up, in time ;)

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.

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.

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