Making a List, Checking it Twice....

Tomorrow (August 1st) is a big day for Colleen as we are going back to Philadelphia to speak with her specialist.    First, we are going in for a breath test to see if she has SIBO.  If it is confirmed that she does, it could be the start of relieving at least some of her symptoms.   After that long test, we have a bit of a delay before she goes in to see the specialist himself.  It will be a long day, but hopefully a productive one.

As for making a list, this is very important:  When you go to see a specialist, write down everything you have been experiencing.  Even if you think to yourself "I have this symptom, but it probably isn't related to my Gastroparesis...", write it down anyway.   Perhaps that one symptom that you blow off because you think it is unrelated will lead your doctor into a new direction.   Not that you don't have Gastroparesis, but perhaps your condition is being made worse by something else going on in your body.

When you write up your list, show it to your loved ones, or whoever is going with you to the appointment.  Loved ones sometimes see things differently than the person actually experiencing the condition.   They may have something to add; but even if they don't, at least they will know what it is you are going to discuss with your doctor.    As a loved one, you really don't want to go into these appointments blind - you need to know everything that is going on.

It is my general rule that I will typically not say much during the appointment myself - allowing Colleen and her doctor to discuss the condition without me butting in every 10 seconds.  By the same token, you have to be ready to speak up and be an advocate for your loved one.   Be ready to back up what he/she is saying to the doctor.  If your loved one is complaining of intense stomach pains, make sure the doctor knows that you have seen the effect of it first hand.  If your loved one's condition has worsened, make sure the doctor knows that you are seeing the decline.

For many doctors, they see hundreds of patients.  They have your history in a folder, and probably remember who you are but the vision is cloudy.  It makes sense, as you often don't see a specialist more than a few times a year, if that.    Nobody sees the pain, suffering, etc. nearly as much as you do as a loved one.  You are more of an expert on your loved one's condition than you may think you are.  No, you can't cure it.  You can't prescribe a drug, or make medical recommendations of any kind.  You are a different kind of expert - the one who sees the patient every single day and can analyze their moods, their energy level, their emotional state, etc.

In the end, if you are making a long drive (or even a short one) to see a trusted expert in the field, make the time worth it.  Make that list.  Check it every day.    Don't ever leave that doctor's office saying to yourself "I forgot about this symptom!"  

Gastroparesis: Treatment Options

If you have Gastroparesis, or you know someone who has it, you should already know that treatments options for the disease do exist - but hardly any of them are dedicated to Gastroparesis itself, and they don't work for everyone who has the disease.

This can raise a few important questions - how can a drug like Domperidone work for so many people, yet have such little impact on others?     The same goes for all of the treatments that are out there for this condition (not that there are many).   You are pretty much playing a game of "flip the coin" with your health in trying to figure out if anything can work for you, personally.     Gastroparesis isn't completely unique in this regard, but that doesn't make it any less frustrating to the sufferer or to the loved ones.

My wife has tried many of the possible solutions.  The Domperidone didn't have much, if any, effect on her.   Erythomycin seemed to have some impact early on in her condition, but the relief didn't last.   She tried the Botox therapy, and that had no impact whatsoever on her condition. 

She hasn't tried some of the more radical approaches used to help the condition.  You may have read about the gastric pacemaker, which does what it implies:  Using a device implanted in your body that controls your stomach muscles.  The success rate on this technique varies, and it seemingly requires a lot of adjustments even when it does work.   I won't discourage anyone from trying it - it is just my personal belief that this would be more of a last resort than the first thing you run and try.  I liken it to a beta version of a video game - it works.  It is playable.   But, just as you are ready to capture the flag, a bug enters the picture and crashes your game.     By the same token, some people have instant success with the device and cannot live without it.

She has also not attempted to use Reglan, a controversial drug that I believe at one time was one of the gold standards for treatment of Gastroparesis.  The biggest problem with Reglan is that it comes with the dreaded Black Box Warning, as it can cause Tardive Dyskinesia, a serious movement disorder that is usually irreversible, especially if it isn't treated right away.    Some people do have success with this drug, however - though it is typically advised that one does not stay on it long term.  My wife has discussed the possibility of asking her doctor if she can give it a try, but naturally there is some hesitation there.   You can find many stories (good and bad) about the use of this drug online.  Some people consider it a savior; others say it was either ineffective or made their lives worse.

You may have heard of Cisapride in your research about the disease.    Cisapride has been banned due to the serious side of effect of cardiac arrhythmias.  Cisapride was once a wonder drug for many with this condition, but is no longer prescribed.  As an interesting side note, Cisapride is actually an approved medication for veterinary use.    

Beyond the typical treatments for the disease, you can try other remedies that control certain symptoms.  For example, ginger gum helped Colleen when she had a bad case of nausea.     

As a loved one, you have the responsibility to listen to the patient.  You can encourage and discourage, but remember that you are not the one feeling the pain every day (or most days).  If your loved one wants to try a more controversial/radical treatment for the disease, you have to do two things:  Gather all of the information you can about the treatment and support your loved one who is seeking it out.  By gathering the information, you are prepared to look for the signs of serious side effects.  You are prepared for the discussion your loved one will have with the doctor.   You are prepared to talk things through with your loved one as well to make sure this is the path they truly want to go in.    Just always remember that the person who is sick is desperate to get better, and sometimes radical approaches can help reach that goal.  It is your responsibility to be the "watchdog".   It may not always be easy - but nothing about this disease is easy for anyone.  But remember, nobody has it worse than the sufferer.

An Apple Fritter a Day.....

Don't let the title of this post fool you; an apple fritter a day, unfortunately, will not cure Gastroparesis.

Often, I have to pay attention to signals that Colleen may be having a (relatively) good day.   As a loved one, these days should be easily to spot:  More energy.  A bigger appetite.   Or, just looking at her face or in her eyes and seeing more life.  It is not easy to describe.  You just know that your loved one is having a good day just based on your own experiences.

There is nothing really funny about Gastroparesis, but it is interesting that my wife & I watch just about every food/cooking reality competition you can think of.    Shows such as Top Chef, Masterchef, Hell's Kitchen, Next Great Baker, The American Baking Competition, Donut Showdown, The Great Food Truck Race.  Believe it or not, I may even be forgetting one or two.    

This isn't really about reality television, however.  One night, when we were watching one of these shows, the topic of apple fritters came up.   Colleen explained to me that when she was younger, her family would take trips to North Carolina, and one of her favorite delicacies during those times were what they called "apple uglies".   Since I had noticed that Colleen was eating more and feeling a little bit better over the last few days, I surprised her the next day by going out and getting her an apple fritter to enjoy.

Apple fritters, obviously, will not show up on the recommended diet for Gastroparesis (of course, they won't show up on a recommended diet for just about anything you can think of), but the moral of this story is simple:  Read the clues that your loved one gives you.   If I had noticed that Colleen was having one of her terrible flareups, the last thing I would do is bring home a deep fried pastry with icing and a few pieces of an apple mixed in.     But since I noticed she was eating a little bit more, and I could tell that she was having a bit of a craving to taste a little bit of childhood, I made the decision to go get that for her.    The best part is the fact that she actually did eat some of it.    It made me feel good inside - seeing her enjoy something that she cannot often even attempt to enjoy.    I remain optimistic that some day, Colleen will be able to enjoy an apple fritter whenever she wants to have one, without a care about what it will do to her stomach later.

Finding the Zebra in a Field of Horses

"When you hear hoofbeats, think of horses not zebras".

In the world of medicine, this is an adage that many professionals live by:  If someone comes to you complaining of a stomach ache, think about gastritis, or indigestion, or possibly GERD.   Don't think about those "other" conditions that most doctors will never see in their entire career as a physician.   This is not necessarily a bad approach - if the odds are that 99% of the people who come to you with Symptom X have Disease Y, it is acceptable to look for Disease Y.   The problem is when a doctor does that, finds nothing, and decides not to even bother looking for Disease Z.     If you have ever had an illness - including Gastroparesis - you have probably encountered the frustration that comes with a doctor who seemingly cannot be bothered.

When it comes to Gastroparesis, there are elements that are both a horse and a zebra.  Most doctors don't seem to know much about what it is and won't order any tests to look for it (Zebra!), but yet 5 million people suffer from the condition in the United States (Horse!)  

One of the many themes I have talked about in this blog is the overall unawareness of the disease - I bet most sufferers who are reading this have gone through a frustration or two in their time.   You seek the opinion of gastrointestinal doctors, and some of them look at you as if you are an alien when you even bring this disease to their attention.

This disease manifests itself in so many ways that Colleen and I both believe there are other things going on inside of her body.    Now that she is in a group of 5 million or so horses, she wants to figure out if another zebra is making her condition even worse.   We are going to investigate conditions such as bacterial overgrowth, which can be a side effect of Gastroparesis - but can also be a condition completely independent of the disease.  Our suspicions are heightened by Colleen's constant succussion splash.   The splashing in her stomach is quite loud, and very noticeable.   It sounds like water entered her stomach and decided to pool there, like a puddle after a rainstorm.     Succussion splash is not a common side effect of Gastroparesis, so we are going to make an effort to see if it is something else.

Remember, your doctor is not a mind reader. And even if he or she is an expert in Gastroparesis, it is highly likely they have never actually suffered from it.   You have to go to them with everything - and ask for anything you want to ask for.   Don't just assume that just because your doctor is an expert that you shouldn't question them on what they are diagnosing or prescribing.     Colleen has an appointment with a specialist on August 1st and has a long list of notes on everything she has been experiencing.    She has many questions she wants to ask.    You have to remember that specialists typically aren't just a phone call away - even if you are an existing patient, it can take weeks to see them.     So, take full advantage of that time and get everything laid out on the table.  If it looks like they aren't listening, make them listen.  It is your body, not theirs, that is suffering.    Maybe, just maybe, they will discover that zebra.    And if they do, you never know:  You may only be a prescription or procedure away from going out to play with all of the healthy horses.

So, When Was I Last Healthy?

I once had a personal experience with a long-term illness.   It started on December 1, 2007 and last until sometime in 2010 or so.    This isn't a blog about my health, however, and I will spare the details.  However, my personal experience with such an illness is what gave me the inspiration for this blog post.

Eventually, when you are in the middle of a health crisis, you will start to forget what it was like to live when you were healthy - as if it was a completely different person who lived that life.  Your entire life is all about how sick you are, and how you are going to get through a day, a week, a month, etc.    You may get to the point where you just deal with it - you aren't exactly living your life, but you come to an acceptance that this will be your life forever.   

I had those same feelings when I was sick.   But here is the interesting thing about all of that:  When you finally do get healthy again, you start to forget about how sick you were during that long-term illness.  I sit here now, amazed that I wasn't able to even walk out to my mailbox or walk through Target without feeling dizzy and as if I was going to pass out.  As I said above, you feel as if a different person must have lived that life, because it just doesn't feel real anymore.   You get to the point where you don't even fear the condition coming back, even if it just might come back.

If you haven't figured it out by now, Gastroparesis is a strange illness.  It completely takes away your zest for life, but can suddenly go away.  In many cases, people don't start to slowly feel better until it resolves.  It appears that it just decides to resolve itself.      Think about having a leaky roof during a rainstorm.   You start to panic, you start to run around the house looking for buckets and towels.    You run to the spot where the roof is leaking, and it isn't leaking anymore.  However, it is still raining and you didn't patch anything. How did the roof resolve the leaking on its own?  That is what people who get "cured" from Gastroparesis often must think:  I didn't do anything special to get rid of this illness.  Why is it gone?  Can it come back? And for those who have unresolved Gastroparesis for months, years, etc they are left wondering:  Why can't mine just magically go away?

Nobody really knows the answer to that.  A doctor can't say it will go away tomorrow or next week.   By the same token, a doctor cannot say that it will never go away.  They have no idea what it is going to do or how it is going to manifest.  In the case of Colleen, the disease did seem to resolve - for months.  But she woke up one morning feeling ill again.  It hasn't gone away since, and the frustration because of that is overwhelming.

As a loved one, you have the responsibility of making sure to drive home the point that the disease has resolved for some people.  That many of those people went through the same living nightmare as you are. They may not believe that - but you have no choice but to believe that.    Simply put, even if you are a pessimistic person by nature, you need to dig deep and find your inner optimist.    Otherwise, you are both heading in a direction of despair.  And once you are in that hole, it will never be easy to climb out of it.

Damned if you Do, Damned if you Don't: The Gastroparesis Dilemma

One of my favorite comic strips of all time was the Far Side.   Gary Larson was a genius - telling a full (typically twisted) story with one drawing and a sentence or two.  

The comic strip above may as well explain Gastroparesis.    You may feel hungry with the need to eat, but you know that if you eat, you may end up crouched over in pain, or get a sudden feeling of fullness and/or nausea that could cause you to throw up what you just ate.      The human body cannot live without nutrients.  Keeping yourself hydrated can often be a problem with Gastroparesis - because there are times when you simply do not feel like eating or drinking.  There are times when you feel like eating or drinking and end up paying a price for doing so.   It is frustrating to the sufferer (and I am putting that mildly), which should make it frustrating for the loved one.   One thing you cannot do is attempt to shove something down their throats - on the other hand, you can't just avoid offering them something.    

My wife has been through the gauntlet.  One of the most frustrating aspects of her Gastroparesis is how the disease becomes so random within her own body.     There have been moments in the past where she felt good enough to ask me to go out and get a pizza.   Then there are times when something as simple as a cracker, baked potato, or white rice is impossible for her to hold down.   This can start a spiral of physical and emotional pain, one that is hard to recover from.   Whenever the disease goes into a lull, that feeling of dread is still there.  You hope the lull stays away forever, but with this disease, you never know.   Think about when you have a cold - when the headache, sneezing, coughing, or whatever symptoms you are feeling go away, you are confident that the cold is not going to come back.  And you would be right about that - a cold doesn't typically attack you, then give you the false sense of security before attacking you again.   Gastroparesis sufferers can only hope that is the case.   On top of that, even if the Gastroparesis resolves, you have no idea why it did.    The doctor can't put you in a MRI machine and say "You are officially cured".  It doesn't work like that.

Bottom line here is that, as a loved one, compassion is one of the best things you can do for a sufferer of this condition.   If you live in the same house, you are going to have no choice - you are likely going to eat a meal or two in front of a sick loved one who can only wish they could have a bite.    Be courteous about it - nobody is telling you to hide in the basement to enjoy your meal.   Just be in tune with the fact that your loved one is sick with a condition where food suddenly becomes an enemy.    And sometimes it is hard to be in the same room as the enemy.  

Gastroparesis Statistics: What do they tell us?

Before you look below, knowing what you know about the disease, can you guess the number of people in the United States who are impacted by Gastroparesis?     Most people would probably guess too low.  The people who see this as a trick question would probably guess higher - and still be too low.    When you have never heard of a condition, your instant reaction probably is that hardly anyone suffers from it.    If I were to tell you that 5-20% of the United States population gets the flu every year, you probably would think of that number as being accurate (it is).

But if I were to tell you that it is estimated that 5 million people in the United States have Gastroparesis, you may be taken aback a bit.    However, that is also the truth.

Now, when you break down that number, it comes out to approximately 1.6% of Americans.  That number may seem low when you look at it in percentage form, but it actually represents a fairly high number for any condition.    

Let us look at other conditions:

Parkinson's:  1 million

MS:  250,000-350,000

ALS:  20,000-30,000

I can go on and on with the list if I wanted to .  As I stated in other entries, my intention here is to not downplay other obviously severe conditions.   My intention is to show that Gastroparesis should be treated with the same type of urgency as other conditions.

Of course, the statistics don't tell us everything.  Sure, ALS only has 30,000 people who suffer from it.  Obviously, the reason for that is simple:  Most people die from it within five years, which means you aren't going to have a high number of living cases.    Diseases that don't have high death rates are going to have higher active numbers.

This is what can make the disease unbearable for the millions who suffer with it:  You aren't likely to die from it, but most of the time, you will find living to be a chore.     Who would want to go through life like that?  You know the statistics are in your favor to live - but the statistics also show you may not get better. 

This is why more needs to be done - the Johns Hopkins breakthrough is only the beginning.  If that can help save people's lives (not just talking about saving from death - talking about getting back to their lives before Gastroparesis), it could potentially lead more experts and doctors to dig into even better ways to save people.    Once the ball gets rolling, the potential for success is limitless.  Unfortunately, not many researchers have even picked up the ball, never mind try to actually roll it.

Finding Answers to Impossible Questions

You have probably had many instances in your life where you had to wonder how you got in the position you are in.        You end up questioning what happened, why it happened, and where you go from here.  Of course, many times, the answers to those questions are impossible to find.  The reason why you got sick, or why you have chronic pain, or why a loved one died too soon are things you often will never be able to figure out.  

That is when we often have to reach deep down into our souls to figure out the riddle - and if we can't figure it out, finding someone who can.

That is how life can be with Gastroparesis.    If your son is out playing with his best friend, and his best friend ends up missing school for a week with Chicken Pox, there is a decent chance your kid is probably next.   That is a concrete answer to why your son came down with the disease:  It is highly contagious, and his friend had it.  Cut and dry.

With Gastroparesis, there often is no obvious trigger.  You don't eat tainted hamburger meat and come down with this like you would food poisoning.   You don't hang out with a friend who has a stomach flu and end up coming down with one of your own.   You don't eat spicy food and suddenly have nausea and indigestion.   It may come as a consequence of another illness (IE, an unrelated illness that decides to attack this area of your body), but trying to figure out why that would happen is another mystery.

So, how can you have answers about this condition when you really don't know what the questions are to begin with?  That is the million dollar dilemma - if you can't ask the question "Why do I have this?", then you won't ever know why you do.    It seems that nobody really knows the why's and how's - and nobody can even really tell you what is going on inside of the body, per se.  They can explain the consequences of the illness - but can they fully explain what leads to those consequences?    In my opinion, the answer is not really.  This is not meant as a slight to the (few) experts that do exist in the treating of this condition.  It is just the nature of the beast.  How can one wake up one morning with a horrific stomach condition, and just have no idea how it came about, why it came about, and how to fix it?   Hopefully, somebody can figure out the answers some day.

In the meantime, if you are a loved one of someone with this condition, you shouldn't be expected to fully understand it.  The person suffering doesn't fully understand it, so how can you?     All you can do is support them during their lowest points and try your best to encourage them.   You can't possibly feel their physical pain, but you can help them with the emotional aspects of it.

New Treatment Option for Gastroparesis?

Just about every day for the past year or so, I always do web searches for Gastroparesis and look at the current news regarding the disease.  More times that not, a news search for this condition comes up empty in terms of finding anything new and exciting.

So imagine my surprise when I did a search today and up came a story about a procedure being tested at Johns Hopkins.   It is too soon to tell (they have only tried it on three patients - but all three have come out the procedure feeling better).     You can read more about the procedure here.

Nobody wants false hope, but this at the very least seems promising.  It is a procedure that tries to strike at the core of the condition, rather than just treat the symptoms of the condition.    Time will tell if it actually becomes a gold standard procedure for Gastroparesis patients, and whether or not it will have a high success rate.     As you know, most every magical cure for diseases that no longer pose a major threat to us had to start somewhere - perhaps this is the start of something big for Gastroparesis.

We can only continue to hope and pray that is the case.

Food! Food! Everywhere There's Food!

As part of an exercise, I would like anyone who is reading this post to think back to the last five times you did something outside of your normal, every day routine.   Whether that be a birthday party, running a marathon, or going to a baseball game.  

Now, thinking of those past five experiences:   How many of them involved food in some way, shape, or form?  I would assume most who run marathons (something I certainly cannot attempt to do) would probably treat themselves to a nice lunch or dinner afterwards.    If you go to a birthday party, the amount of food available may be endless.   If you go to a ball game and have $20 to spare, that should get you at least a hot dog (depending on which stadium, of course)

Now, I am sure if you are a Gastroparesis sufferer, the last thing you want to read about in a blog is how much food is a part of everyday life - even when we do things that are not in our every day routines.

That is the point of this blog, however.

Obviously, nobody should feel guilty about offering food at a party, or buying food at a sporting event, or celebrating with food after an accomplishment.     But for someone with Gastroparesis, this is what can cause  anxiety to rise - and one of the last things a Gastroparesis sufferer needs is increased anxiety.

How does this tie into being a loved one?      You have to understand that sometimes people who suffer from this condition do not want to be around food.  Especially the types of foods that celebrations often have.    It is not easy to sit and watch as everyone else is enjoying a birthday cake.   If you go to a dinner party, more than likely there will be a lot of compliments to the host on how good the food is.   For a sufferer of this disease, that as well can trigger anxiety - all of this great food that everyone loves, and I can't have any of it!

The bottom line is that if your loved one suffers from this, you may have to come to terms with the fact that often you will need to attend events solo (or with your children only if you have them).    It is OK to feel awkward about that very notion, but remember:   Your life is easy compared to the person who is staying home.      In my case, the most awkward moment was the first time I went to an in-law's house for a major holiday.    It may not feel normal at first, but I try my best to avoid missing these events.   I often come back home with many stories to tell, and my wife is interested in hearing them.   I try to avoid the food subjects, but she typically just asks me anyway.  

Sometimes, you just have to use your best judgment.    Guilt is a strong emotion - and it works both ways.  You may feel guilty leaving your loved one, but your loved one will feel guilty that you only stayed home because of their illness.    That is normal behavior.   Don't avoid it - embrace it and come up with the best possible solution.  Because the last thing you want is for either of you to go from "guilt" to "resentment".

I Guarantee It!

The words in the subject of this post are the most powerful words this entire post will contain.   If you go to a used car lot, and the salesperson tells you "This car will not break down for 50,000 miles - I guarantee it!", what would your reaction probably be?  My first guess is that you would ask about the nature of that guarantee.  You would probably get answers such as "As long as you bring it here for every oil change, or any time you notice anything wrong with the car.  If it is obvious you took this car anywhere else for repair, the guarantee is void."    That would likely be the most reasonable condition among a bunch that are completely unreasonable.

Of course, this is not a blog about used cars - it is a blog about Gastroparesis.  But there is a tie in - that is, if anyone tells you their product, service, etc. is guaranteed to make you feel better, you really should do one thing:  Run.   All they want is your money, and they don't care one bit about you or your condition - except for the fact that the longer you have it, the more money they can make selling you fake remedies.

This isn't to say that all products are necessarily useless.  You just have to be careful in making your choices. My wife encountered a Snake Oil Salesman in her quest to get better - it didn't have the happiest of endings. As I have said previously, I am more than willing to give details to anyone who asks for them - in this case, I may even write an entire blog post about this person, as my wife's faith in getting better was almost ruined by him.  

If a product or service is too good to be true, it is.  There is no cure for Gastroparesis.  There aren't many remedies.  Many of the products used to help with other stomach/digestive disorders have absolutely no impact on a Gastroparesis sufferer.   A few things may help with a few of the systems - ie, ginger can be great for controlling nausea.   But it isn't a cure for the CONDITION - it just helps relieve one of the SYMPTOMS.

So, if you see a product online for $49.99 that is "proven to help or even cure people with Gastroparesis", don't buy it.  Or at least research it.  But be careful - some of these people are very tricky and will put fake reviews up online.     There are many reputable people who fight and study this disease - go to them.  Go to a doctor who at least understands the condition.  Seek out REAL websites that deal with the condition - trust me, if a product for Gastroparesis is found online, it has been discussed in legitimate forums and facebook groups dedicated to the disease.

If someone offers you a program that he/she says will cure your condition, don't believe it.  It won't.   Some of the tips given may be useful, but they are not cures..and they are tips you can find in a $20 book dedicated to digestive disorders.

Finding someone who can legitimately help you is hard - but is doable.  Finding people looking to steal your money by praying on the sick is not very hard.  It is actually way too easy.

Oh, You're Just Lazy!

My wife showed me a post on Facebook the other night from a fellow Gastroparesis sufferer.  The post was a fairly long one, but the gist of it was this:  A loved one, or several loved ones, are beginning to think she is just lazy and unmotivated every day.

It is easy to fall into this trap.   You may be having thoughts about why your loved one wants to sleep more than usual, or why he/she doesn't want to go out and do things they may enjoy.  Perhaps you wonder why their motivation is simply non-existent.

Let me just give you a little bit of advice as it pertains to this:

1.  Think about to the time right before your loved one was stricken with this disease, assuming you knew them before they were diagnosed.    Think about how productive, how full of energy, etc. they were during that time period.     Do you want to know why I want you to think about that?  Because that is exactly how your loved one wishes they felt right at this moment.     Most people like to be productive in some way - or do the things they enjoy whenever they feel like doing them.  Most (healthy) people do not want to sleep all day.  They want to work.  They want to go out and do things.  They don't want to be feel trapped in their own homes, or within their own bodies.
2.  Think about how you would react if your loved one was going through this with a different disease that is more well-known.   For example, what if your loved one had MS and was having a flare-up that caused them to need rest for hours, or even days?   What if your loved one had cancer, and needed to rest after a chemo treatment, or is just having a rough time in general?    How about something like this:  What if your loved one had the stomach flu that knocked them out for 24 hours?  Would you think they were lazy?  I sure hope not.  And, for some people, Gastroparesis can feel like a constant 24-hour stomach flu that just never goes away.
3.  Think about the essence of the disease itself:   If your loved one suffers from it, you probably have noticed that there are days when he/she cannot eat.   Days when he/she even has trouble drinking a glass of water.   Think of what that would do to anyone's body:  You would get dehydrated and weaker, which causes you to need to sleep and rest more.

If you are a loved one who likes to read about the condition and how it has impacted others, also remember another very important fact:  This disease strikes people in different ways.  Of the millions who have it, I would assume that just about all of them have different experiences, different symptoms, and different causes.   So, just because you read a post from someone who may say something like "I have Gastroparesis, but it doesn't really impact my day to day too much", remember that the person typing that may have a mild form of the disease, or may have symptoms that aren't quite so severe as other symptoms.   Everyone is different - don't take what one person's experiences are as gospel.   Just help the person in your life who has the disease get through it the best you can.  It may not be easy - but it is essential for them to have people around them who support them 24 hours a day, 7 days a week.