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Meeting a Congressman About Gastroparesis

Posted by Mildred Jane on April 21, 2013
Posted in: Gastroparesis, health, Inspiration, Life, Make A Difference, Politics, Uncategorized. Tagged: , , , , , , . 5 Comments

United States Capitol Building

This weekend has been beautiful outside but I have been happily sitting at my laptop preparing a binder about Gastroparesis for my meeting with my Congressman tomorrow.  All in all, I am quite pleased with how the binder has turned out.  It includes a lot of great information about Gastroparesis from a variety of sources.

I am now working on my talking points and the order I want to present them in.  Practicing some of the statements has made me quite emotional.  It is so hard to not have your voice quiver when talking about how people are quite literally starving to death due to a lack of a cure and treatment options.

It’s difficult to talk about finding your Plan B in life and continuing to pay the bills.  Talking about how your life has been quite literally turned upside down and all of your priorities have changed.  Things that once seemed so important now seem so trivial.  Discussing how this shift has cost you your relationship with what were once dear friends and even your own family.  Describing what it is like to have people disappear from your life because they don’t know what to do with you.

It’s also emotional talking about all of the new people that have been met due to Gastroparesis.  People that are some of the strongest people I know.  People that have overcome some that most amazing obstacles.  There are also the caregivers who never complain and keep trying to help us in the best ways that they can.

Gastroparesis brings together people from all backgrounds into one unified voice.  A voice that needs to be heard & I’m more than thrilled to be speaking to my Congressman tomorrow on behalf of all of us.

Now it’s time for me to get back to it so that I can represent tomorrow!

~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

Finally Meeting in Person

Posted by Mildred Jane on March 1, 2013
Posted in: Gastroparesis, health, Inspiration, Life, Uncategorized. Tagged: , , , . 8 Comments

friends

There are many downsides to Gastroparesis, but one of the coolest things about GP is that you meet so many amazing people from all over the world.  Most of the “meeting” is on-line.  In fact almost all of the meeting is on-line.  You chat on IM, you send Facebook messages, Twitter messages, share items on Pintrest, or maybe chat on the phone.  It is amazing to see and hear all of the great things that people are accomplishing in spite of Gastroparesis.

It is so helpful to make Gastroparesis friends to share in the ups and downs, to laugh and cry, and to understand what the heck you are trying to say during brain fog.  For me, I have been privileged enough to make a GP BFF.  Something about our personalities just clicked immediately when we were chatting on-line.  We swear that we were separated at birth!

We are both working professionally and have chatted numerous times about the challenges of navigating Gastroparesis in the work place.  It is a very difficult situation to navigate and it helps to know that someone else is treading the water with you.  It helps to have someone know exactly what you are talking about when your brain leaves you.  It helps you to know that you are not going crazy and that so many things that now happen to your body is a result of this horrible disease.

Marie (My GP BFF) lives on the opposite coast of the country as me.  As such, we never thought that we would meet in person.  We have only ever communicated via IM and have never spoken on the phone.  Although, I can tell you that there have been more  than a handful of occasions where she has completely turned my day around.

Today was quite special.  I was flying into Washington DC to advocate for Gastroparesis and so was Marie.  In fact, we had decided to share a hotel room.  So today, we met for the first time in the Washington DC airport.  It has been a fun day of talking in person to one of the best friends a girl can have!

So as much as Gastroparesis turns your life upside down, it provides you with an opportunity to meet so many amazing people that you would have never met otherwise.  I am so thankful for the on-line support groups and for all of my GP brothers and sisters.  I hate having this disorder but am so glad that it provided me the opportunity to meet all of you.

~Millie

PS…Hey Marie!  I see you over there, you’re not just in my computer anymore!  😛

When Your Body Stops You In Your Tracks

Posted by Mildred Jane on February 5, 2013
Posted in: Energy, Gastroparesis, health, Uncategorized. Tagged: , , , . 1 Comment

bed

As I have mentioned in previous blogs, I am working my way out of a Gastroparesis flair.  However, it seemed to rear its ugly head in full throttle last night and into today.  As such, the majority of my day was spent imitating the photo above (complete with reaching for my tea).

One of the hardest parts of a flair up is that they require you to miss work.  I should mention that I work for a Fortune 500 company that is fast paced, demanding, but fair.  In addition, I have an advanced degree from a prestigious University which adds an extra layer of expectation as to the end result of my work.  My position also affords me the opportunity to interact with senior management.  I have also traditionally been a high achiever and have been in denial about the need to slow down due to Gastroparesis.  (More on this in future blogs.)  That being said, ALL jobs in every walk of life in every background are important and anyone with Gastroparesis goes through the same level of stress when they need to call off due to a flair.

When I need to call off work due to a flair, I go through the following cycle of questions:

Meetings:  What meetings do I have today?  If so, is the meeting with someone that would be beneficial to meet to help with my career growth?  If I have a meeting, can it be rescheduled?  How many times have I rescheduled on this person recently due to being ill?  Will the person understand?  To what level will I need to speak and educate about Gastroparesis?  Have I already educated the person?  Is there someone I can send in my place?  If I can send someone in my place, can I get them up to speed in the morning? etc.

Projects:  What project deadlines are approaching?  Can the deadlines be shifted?  If the deadlines can’t be shifted, is there someone else that could fill in for me?  If someone could fill in for me, is it faster to explain it to them or just do it myself?  If the deadline can be shifted, who do I need to e-mail to inform?  Will they understand?  Have I shifted deadlines on them in the past?  If the deadline can’t be shifted, can I muster up the energy to work on it from home?  (This last question is more related to me being in denial about limiting myself which will come in future blogs.)

Vacation Time:  Do I have enough vacation hours left to have paid time off?  If I use vacation hours to take the day off, how many days does that leave me for the year?  If I use vacation hours, will I have enough days to cover myself when flairs occur later in the year?  If I use vacation hours, will I have enough days to go on the vacations I have planned?

Keep in mind, that all of these questions are running through my head and being answered in my head all while battling through stomach cramps so severe you think that someone is stabbing you in the gut with a bunch of knives.  This is all going through your head, with your stomach so extended that you appear 6 months pregnant and your stomach is hard as a rock so you hope that one of the knives stabbing you punctures your gut to let out some of the pressure.  All of this is going through your head while you are trying not to vomit and worrying about how long you might vomit for if you start.  All of this is going through your head while you are wondering when you might be able to eat again.  All of this is going through your head while you realize that life will never be the same again.

So the next time you have the flu, a stomach virus, or any ailment which requires you to call of work, think about the stress you go through with making the call.  Now imagine having that stress at least 2 times per month.  Or in my current flair, I’ve had to make this judgment call at least 6 times over the past 3 weeks.  You worry about your credibility remaining in tact, you worry about continuing to receive the projects you enjoy, you worry about whispers behind your back, you worry about all of these.  You worry about all of these sometimes more than worrying about when you might be able to eat again.

All of this is just a “normal” part of living a life with Gastroparesis.  Sure some days are better than others, but the lows are really low and are why we MUST find a cure and treatment options for this life.

So I spent today rotating between my bed and the couch with my faithful dog by my side to guard me from the GP elves that were trying to take over the house to liter it with ginger ale cans, tea cups, socks, and slippers!

~Millie

Spinning Like a Top

Posted by Mildred Jane on February 2, 2013
Posted in: Energy, Gastroparesis, Uncategorized. Tagged: , , , , . Leave a comment

Top

We’ve all been there (Gastroparesis or not); we get dizzy and start to spin.  Everything gets blurry and moves in and out, it starts to make you feel nauseous.  It is a helpless and frustrating feeling.  You don’t know when you’ll stop spinning, you just hope that it is soon.  Today, the dizzy spell started for me….on my way home in rush hour traffic.

With Gastroparesis the dizzy spells happen quite frequently.  It’s really not all that surprising when you stop and think about it.  We can’t eat “normally” and are lucky if we can handle solid food once per day.  This makes it difficult to meet the nutritional needs of your body and it is extremely easy to become malnourished.  Hence, the frequent dizzy spells.

When your body can’t digest food properly, it means that you no longer eat food for enjoyment, flavor, or socializing.  You merely find ways to force yourself to intake the minimum daily nutritional requirements of your body.  Did I mention that this is done while avoiding a plethora of food?  (More to come on food limitations in future blogs.)

My current method of forcing (yes, forcing) nutrients into my body is through custom made protein smoothies, Greek yogurt, and coffee.  I refuse to give up my coffee even though I know it is trying to kill me.  GP has taken so much from me that I refuse to let it have my morning cup of Joe!

This means that every Monday – Friday I have the EXACT same “food” intake.  Yes, every Monday…Tuesday…Wednesday…Thursday… …Friday…every week…every month…it is the same exact same food at the same bat time on the same bat station.  I start off every day at 7 am with a cup of Greek yogurt for its 15 grams of protein.  At 9:00, I venture for a slight walk across the building for my morning cup of coffee and gossip.  Then at 10:30 it’s a custom protein smoothie containing:  tofu (protein), frozen organic berries (all sorts of fun stuff), orange juice (calcium), spinach (more fun stuff), peanut butter (more protein).  Around 2:00 it’s time to follow that smoothie up with…you guessed it! Another smoothie!  This time it’s a thrilling blend of:  coconut water (potassium), oatmeal, more frozen berries, honey, and hemp protein powder.  Yes, hemp protein powder.  My experiment with whey protein powder almost sent me to the emergency room for severe stomach cramping.  I may have avoided the hospital, but it did result in non-stop vomiting, which led to not eating for a week which led to an IV to refuel.  (More on IVs in future blogs.)  For dinner it is usual some stand-by recipe involving various combinations of rice, chicken, turkey, noodles, and if I am lucky…some beef.

As you can see, experimentation with food is not advisable.  Experimentation only occurs on the weekend when I can allow proper recovery time if something goes awry.  Experimentation only occurs when I am close to home and know that I have my comfy bed to curl up in, my guard dog to try to cheer me up, and my amazing boyfriend to make sure the GP elves have restocked the ginger ale!

~Millie