Roller Coaster of Emotions

Posted by Mildred Jane on March 25, 2013
Posted in: depression, Gastroparesis, Inspiration, Life. Tagged: , , , , . 11 Comments

rollercoaster_image

Gastroparesis is a tricky disorder.  Not only does it affect your stomach, it also has a profound affect on your brain.  As mentioned in previous blogs, I believe a reason for this is due to the malnourishment.  However, I suspect that there is something larger going on.  My hypothesis is that Gastroparesis also affects the chemicals in your brain.  I’m not a medical researcher, I haven’t read anything on this subject, but I know how I felt when I had a concussion, I know how I felt prior to Gastroparesis, and I know what I feel like now.  The only logical conclusion that I can come to is that in addition to the malnourishment that there is also a chemical affect.

It also seems in talking to others with Gastroparesis that the brain element is much larger than anyone gives credence to or discusses publicly.  It is an area that needs more discussion.  This morning has been a roller coaster of emotions for me.  I swing between highs of feeling extremely motivated, inspired, and unique original ideas for both my day job and advocacy work.  Then the pendulum swings into extreme lows.  Lows that are rather dark and only others with Gastroparesis totally understand.  When you come out of the darkness, you think to yourself “who was that person?”

The worst instances of the pendulum is when it swings from hour to hour and your brain is literally all over the map.  It’s like you are riding a roller coaster and the chemicals in your brain are dictated the course of the car.  You have a surge of one chemical and you are flying high.  You are happy, you are motivated, you come up with some truly amazing unique work.  Then in the snap of the finger the chemical is gone and replaced with another one, you are then in a tunnel underground hoping that soon you will pop out on the other side.

I try to keep my entries light-hearted and show how to remain positive through fighting Gastroparesis.  However, I feel it is important to also educate about the dark side of Gastroparesis.  When it gets dark, it gets REALLY dark.  It is EXTREMELY important to remain positive so that when the darkness hits you can listen to that little voice in the back of your mind that is trying to break through and tell you that you can do it.  Without that little voice, it would be hard to come out of the darkness.

Now if I could just get off the roller coaster so that I can ride the antique cars with the GP Elves.  It seems like it would be a much smoother ride with time to enjoy the scenery.

~Millie

How You Can Help Fight Gastroparesis! IMPORTANT!

Posted by Mildred Jane on March 24, 2013
Posted in: Gastroparesis, health, Inspiration, Life, Politics. Tagged: , , , . 1 Comment

Thank you to everyone for following this blog.  If you wondered how you can help fight Gastroparesis, now you can!

There is a proposed bill in the United States House of Representatives which would increase the funding for research into dismotility disorders such as Gastroparesis.  They only way that this bill will be passed is by all of us informing our congressmen/women that we need this bill passed.

You can do this either through the link below and/or by calling your local representative.

https://www.popvox.com/bills/us/113/hr842

With the diagnosis of Gastroparesis, so much is taken out of our control.  By sharing this bill and signing the attached, we have the ability to take control back!

If you have any questions, please let me know & I will be happy to help as much as I can.

~Millie

The Joys of Motion Sickness

Posted by Mildred Jane on March 24, 2013
Posted in: Gastroparesis, health, Inspiration, Life, Spinning, Travel. Tagged: , , , , , , . 6 Comments

motionsickness

When I was younger, I never used to get motion sickness.  I was able to ride all of the rides at the amusement park or local fair.  As I got older, I was no longer to ride the spinning rides such as the tilt-a-whirl, scrambler, etc.  For some reason they made me extremely motion sick.  I really didn’t think anything of this because I have heard that most people have a problem with these rides as they get older.

However, the further along I am in my Gastroparesis diagnosis, the more I get motion sick on everything.  I get motion sick in the car, I get motion sick on a train, I get motion sick on a plane.  I’m not sure about boats, because I didn’t have any boats to go on.  This latest time flying was really bad.  I was popping my Zofran like it was candy.  (Probably not the wisest decision & definitely talk to a trained medical professional before copying this tactic.)  Now when I fly, I can feel every tiny little speed bump that we go over.  My head starts to spin, the pressure builds up tremendously and I just can’t wait to get out of the plane.

All of this complicates the fact that I really  enjoy reading on flights.  It is a solid 2-3 hours of undisturbed time and I can get through several chapters of a good book in that time.  It always makes me more determined to carve out time to read when I get home.  Even though I am extremely motion sick, I still read.  I will not let Gastroparesis steal something else from me, so I powered through and read my book.

This time I developed yet another symptom.  When I got home, I felt like I was still moving.  It was the same sensation as after a long day at an amusement park.  I’ve never had this happen before with flying, but I guess it is something that I will now have to add to the equation.

I’m just thankful that the GP Elves helped give the plane a push and turned my 3+ hour flight into a 2 hr 15 minute flight.  It got me out of the motion sick environment faster and gave me plenty of time to track down some Gastroparesis friendly snacks in the connecting airport!

~Millie

What tactics do you do to limit motion sickness?

Uncomfortable Airplane Ride Ahead!

Posted by Mildred Jane on March 23, 2013
Posted in: bloating, Diet, Energy, expanding waist, Gastroparesis, health, i'm not pregnant, Inspiration, Life. Tagged: , , , , , , . 2 Comments

airplane

Later today I will be flying back home.  I’m not looking forward to the plane ride because I am severely bloated and feel like the woman on the left of the drawing.  Normally I feel like the woman on the right.  Needless to say, it is going to be hard to get comfortable.  I will admit that it won’t be as difficult to get comfortable as a 6’2″ body builder, but nevertheless it will be hard.

Part of the reason that it will be difficult to get comfortable is that when you have Gastroparesis and are experiencing extreme bloat it is hard to get comfortable anywhere.  Your clothes don’t fit, your constantly pulling them out from under your bloated stomach roll, and your constantly squirming in your seat to attempt to relieve as much pressure from your stomach as possible.

It also gets difficult to mentally deal with.  It is hard to see yourself increase by 2 sizes in a day by doing a basic human function:  eating.  I’m a delicate eater and have tiny meals so it isn’t like I ate everything in line at a buffet.  My grand total for yesterday was: two forkfuls of scrambled eggs, half a sandwich, some french fries, and a strawberry crepe.  That is it!  Not a lot of food by any stretch of the imagination and all of it was 100% organic.  I also walked around a city for about 4 hours, so I definitely burnt enough calories for the day.  So why the heck do I look 5 months pregnant?  I tried holding my stomach in as I walked around town, but it was getting too painful.  Then finally, I said to myself, forget it!  I’m going to walk around and let everyone think that I am pregnant.  Once I did this, I started to feel better.

Gastroparesis bloat is a vicious cycle.  There is always a low spot where you just want to lay in bed and cry.  You want to cry over having no control over your body any more.  You want to cry over needing clothes in 3 different sizes.  You want to cry over not having the body shape that you once had.  (Whether it is extreme bloating or extreme weight loss.  Several people with Gastroparesis fight long and hard to maintain a frame of 100 pounds.)  However, crying in bed will get us nowhere.  It will only cause us to miss out on the life that is out there for us.  It will only cause us to cry more over what we are missing in life.  It will only cause us to become more depressed.  It will take us down a road that is extremely difficult to climb out of.

I refuse to let Gastroparesis get the best of me.  Sometimes it does, but I try to fight it as much as I can.  I’ll just remind myself of what a Gastroparesis Sister told me about her recent trip, “Yes, I ate things I shouldn’t have.  Yes, my slacks now feel like the are sawing my body in half.  But it was worth every minute of it.  It was worth acting normal and experiencing things I would have normally experienced while traveling.”  So when I get home the first thing I’m going to do is put on my trusty yoga pants to limit the discomfort and pat myself on the back for not letting Gastroparesis slow me down on this trip and for not letting it make me depressed more than 30 minutes.

~Millie

10 Minute Delay

Posted by Mildred Jane on March 21, 2013
Posted in: BrainFog, delayed reaction, Gastroparesis, health, Inspiration, Life. Tagged: , , , , , . 1 Comment

glitch

Do not adjust your screen!  The image above is as blurred as my brain.  An interesting phenomenon that happens with Gastroparesis is that sometimes you run on a 5-10-15-20 minute delayed reaction/response.  In your mind, no time has passed.  However, in reality several minutes have passed and much to your dismay the rest of the world hasn’t stayed on pause along with your brain.

This recently happened to me on this trip.  As mentioned previously, when I travel I purchase my own food and keep it in a refrigerator in the hotel room.  This particular trip I had forgotten to pack spoons.   My boyfriend asked me if I wanted him to go to the front desk and ask for a spoon.  I said yes.  I thought I responded immediately.  He had also asked me what time I needed the alarm clock set for.  I said that I couldn’t think about it yet.  (By the end of the night, not only is my brain delayed but it can’t multi-task.) I thought I responded immediately again.

However, this is what my boyfriend “claims” happened.  (He has always had my best interests at heart and is extremely patient.  Based on this, I have no reason to think that his claim is incorrect.)  He said that he asked me about the spoon and did not receive a response.  A few minutes later he asked about the alarm clock and after an additional few minutes I responded that I couldn’t think about it yet.  A few minutes after that he asked about the spoon again and quite awhile after that I again said that I couldn’t think about it yet.  Apparently from the first spoon question to my incorrect spoon response, 15 minutes had passed.  Apparently I answered the alarm clock question twice but thought that I only answered it once.

The basic chain of events is a complete mystery to me, but these types of conversations happen all of the time.  I also know of several other GPers who have the same issue.  However, all you can do is laugh about it and collect as many spoons as you can (both figuratively & literally!)

~Millie

Sometimes You Just Have to “Eat”!

Posted by Mildred Jane on March 20, 2013
Posted in: Diet, Gastroparesis, GERD, health, Inspiration, Life, Uncategorized. Tagged: , , , , , . 4 Comments

fancy-food-2

There comes a time in the life that you are offered such an amazing food selection that you just have to try it.  You have to throw Gastroparesis caution to the wind and try the detectible dish that is placed in front of you.  You know that the odds are high that you will pay for it later.  You know the amount of Prilosec you are going to have to consume to keep the GERD at bay.  You know the amount of Zofran you have to take to keep from vomiting.  You know that in spite of all this that consuming the dinner placed in front of you will be completely worth it.

The conference I am attending has a legendary dinner.  Considering this is my first time at the conference I wanted to partake in it rather than bringing in my smoothie to consume while everyone else dined.  (I have been known to do this and have become immune to the stares that it gets.)  The menu contained a fish option, which I knew was going to be a really horrible decision.  (Fish doesn’t go well for me at all.)  Another option was Antelope which was quite intriguing.  Yet another option was cocoa covered steak.  Considering I had never had antelope (who has?), I had absolutely no idea what the damage would be.  I decided to go with the controlled damaged of steak.  It also had a side of potatoes that I knew I could stretch out over the course of the evening.

The dinner came and it was A-M-A-Z-I-N-G!  I decided that for the next 60-90 minutes that I would be “normal”.  I was going to forget that I had Gastroparesis.  I was going to forget that I would likely end up with stomach cramping, horrible GERD, and nausea.  I was going to enjoy this dinner no matter what the consequences were.  (Sorry to everyone reading this on TPN & Feeding tubes!)  I decided that I could lessen the potential damages by consuming bites of food that were the size of a pencil eraser.  This also helped to stretch out the consumption which allowed me to “finish” at the same time as everyone else.  Even though my plate was more than half full, I was done eating at the same time and the server was more than happy to whisk my plate away with everyone else’s.  No one noticed.  No one asked questions.  No one cared.  For one night I was “normal” and enjoyed a taste of my pre-GP life.

Now I am going to try to fall asleep as fast as possible before all of the Gastroparesis symptoms kick in.  Hopefully they work themselves out before I wake up in the morning!

~Millie

Gastroparesis Fun With Swimsuits!

Posted by Mildred Jane on March 19, 2013
Posted in: Diet, Gastroparesis, health, i'm not pregnant, Inspiration, Life. Tagged: , , , , , . 6 Comments

This week I am traveling (AGAIN) for work.  Fortunately, it is taking me to a much warmer climate and to a hotel with a pool.  Considering that I have a Vitamin D deficiency and haven’t felt such warm air in so long, I decided to go for a swim.  Now this is where Gastroparesis gets REALLY REALLY fun.

As mentioned in previous blogs, your body shape can change dramatically over the course of a day.  Even up to 2 clothing sizes.  Females also know how much fun it is to purchase/wear a swimsuit when your body stays the same all day.  So needless to say, my adventure of the day involves a swimsuit.

My swimsuit was purchased during a spell of “normalcy” and is usually quite flattering.  It is a modest two piece with a tankini top & a skirt bottom.  (I am a modest person and keep my swimming apparel as such.)  I tried on the swimsuit last night and all things considered, it fit.  However, today I had to partake in some airport food which involved picking the chicken out of a taco and eating a solid meal for dinner.  Hey, I’m in Texas, I have to try something normal even if it kills me.  I didn’t experiment too much and stayed with chicken.  I also guzzled over a liter of water throughout the day to stay hydrated.  So let’s take a wild guess of what happened?

Did you guess bloating?  If so, you are correct.  My belly looks like I am a proud glowing mom-to-be and will be naming my daughter or son in about 3 months.  So let’s guess what happened with the swimsuit.  Yep.  You’re on the right track!  The tankini started riding up and the swimskirt started riding down.  It was as if my GP bloated belly was parting the red sea of my swimsuit.  Those GP Elves wanted to cross on skin, not material.  Maybe I was just about to get rushed to the hospital to deliver my new bundle of joy.  Pick a description, any one will do.  The only thing we know for certain was that it was NOT a good look.

Last night I looked like the photo on the right (okay, a bit of an exaggeration!).  However, today I look like the photo on the left (which is an understatement!).

swimsuit

Did I let this awkwardness stop me?  Absolutely not!  I was determined to enjoy the fresh air, the sun, and the soothing water.  My Gastroparesis survived 6 hours of traveling and food adventures, so I was celebrating with baring my belly in the pool.  I will own this hot new fashion trend.  I’ll just hope that no one from the conference sees me so that I won’t be asked all throughout the conference when I am due.  Maybe I’ll just say March 2014 & see if anyone does the math.

~Millie

Needing a Recharge

Posted by Mildred Jane on March 18, 2013
Posted in: Energy, health, Inspiration, Life, Travel. Tagged: , , , , , . 4 Comments

recharging

WOW!  If ever there was a day that I needed a personal fueling station, today is it!  I am exhausted and hitting a major wall; fortunately the Gastroparesis brain fog hasn’t surfaced.  Although, it seems as if those pesky GP Elves have spiked my tea once again and are trying to get me to fall asleep so that they can wreak havoc on the house.

Normally in these situations, I would power through an hour or so of quality TV and then go to sleep early.  Not today!  Today, I have to pack for a business trip that requires me to leave my house at 6:15 am.  I also have to drop my dog off at a friend’s house so that she is supervised (and spoiled) while I am gone.  My friend has a 3 month old baby that I must also hold and spoil.  (He is such a cutie and I love any time that I get to see him!)  So needless to say, tonight is going to be hectic and will not be involving a nap.

This is when Gastroparesis gets interesting.  You know if you power through everything that you are increasing your likelihood of getting sick.  However, the plane will be taking off tomorrow morning with or without me, so I have no choice.  All I can do right now is hope that I get everything done, that the clothes that I pack match, and that I pack both shoes in a pair.  (While I was advocating in Washington DC, a fellow GPer packed 1 sneaker and left the mate at home.  I kid you not!  This is a true story.  I blame it on the GP Elves, of course!)

Even though I know that somehow I’ll find a way to complete everything, I still would really like to have a nice little charging station like the one in the photo above.  There are so many times that it would come in handy.  It’s a shame that instead of spiking my tea, that the GP Elves would start inventing this contraption!

~Millie

Thank You for Following My Adventures!

Posted by Mildred Jane on March 17, 2013
Posted in: blogging, Caregiver, Gastroparesis, health, Inspiration, Life. Tagged: , , , , , . 2 Comments

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THANK YOU  to everyone for making yesterday a record setting day for Adventures With Gastroparesis!  Yesterday, the blog had the most visitors and views since it’s inception (only a few months ago).  We’ve also passed over 100 Facebook Likes and over 160 followers through all mediums (Facebook, Twitter, & WordPress).  The blog has also had views from over 15 countries!

A couple of months ago when I started this blog, I was hoping that it would help a few people.  I was hoping that it would help people be able to better communicate what daily life is like living with Gastroparesis.  I wanted to share the Gastroparesis ups, downs, fun, painful, happy, sad, and everything in between.  No holds barred.  No punches pulled.  A realistic window into how Gastroparesis changes every aspect of your life.

So often our caregivers try incredibly hard to understand what we go through.  Why not provide them with something that they can read to understand?  We get so tired of talking about GP with our caregivers, so why not provide them with something that only takes 5-10 minutes a day to read in order to gain a better understanding.  I was hopefully that I could achieve effectively communicating what a GPer life is like.  However, I never dreamed that I would have so many followers from so many different countries in such a short amount of time.  I also never dreamed of all the heartfelt comments and encouragement I have received from all of you!

All of the support and encouragement has made me realize that sharing my adventures is making a difference.  It has made me realize that there is a purpose to me having Gastroparesis.  It has made me realized that I am just beginning to discover and unlock my true purpose in life.  It has made me realize that my goal in life is to increase knowledge of Gastroparesis and what our daily life entails.

Thank you to everyone for believing in me!  Thank you for following my adventures!  Thank you for sharing my adventures with others!  Thank you (most of all) for making me realize that I am accurately portraying what a GPer life is like!

I promise not to let you down!

~Millie

Yes, I’m Lucky to Have Gastroparesis on Saint Patrick’s Day!

Posted by Mildred Jane on March 16, 2013
Posted in: Diet, Friends, Gastroparesis, health, Inspiration, Life. Tagged: , , , , , , . 3 Comments

Four_Leaf_Clover_068

Even though I fight Gastroparesis, I am feeling pretty lucky this Saint Patrick’s Day.  There are so many people that I would have never met otherwise.  The Gastroparesis is a truly amazing community.  We band together from all walks of life, backgrounds, beliefs, political views, geographic locations, life goals, financial means, and you name it.  I have said on several occasions that nothing bands people together like fighting Gastroparesis!  There are several members from the GP community that I can’t imagine never knowing.  They inspire me, help keep me going, and continue to remind me that I need to keep writing.

Through Gastroparesis, I have also realized just how truly amazing the majority of my friends are.  They help think through alternative treatment plans, they offer to help me with my advocacy work, and they volunteer to do anything they can to help.  I can also tell that several of my friends of spent a fair deal of time learning about Gastroparesis.

Tonight, a handful of friends are coming over for Gastroparesis dinner and game night.  Instead of kegs and eggs, it will be games and easy to digest food.  (Doesn’t rhyme, but is just as fun!)  I’ll admit, when we first scheduled the game night we did not realize that it was on Saint Patrick’s Day weekend.  However, once we realized it, we decided to make it a mini-Saint Pat’s party.

One of my friends asked for a list of what I could/couldn’t eat so that she could bring something that I could enjoy.  It really meant a lot to me.  At first, I thought about sending my usual note “Thank you, but the list is so crazy that I will be okay.  Bring something that you would enjoy.”  However, this time a light bulb went off.  My friend was willing to come up with a crazy dish to try to make it GP friendly and that it would be rude to not take her up on it.  So I sent my list which may have put her over her text limit for the month!  Her & her husband researched dishes that would be fitting for both Saint Patrick’s Day and it sounds like they have come up with something!  Anyone reading this who has Gastroparesis will realize what a truly amazing accomplishment this is and how much time it probably took them.

To some, it may seem like a small act:  bringing a special dish.  However, to someone with Gastroparesis it is the equivalent of them climbing Mount Everest for you.  It makes you realize that you actually do have the Luck of the Irish because you are lucky enough to have some pretty amazing friends both in and out of the GP community!

~Millie

What is everyone else doing to balance Gastroparesis & Saint Patrick’s Day?