You Have what did you call it Gastro something?

Don’t you just hate this question?  Even worse don’t you hate having to explain what Gastroparesis is all about?  Do you tell someone the simple answer my stomach is paralyzed?  Do you try to explain the symptoms?  Do you tell them to just imagine their worse flu and think about living like that every day?  Do you try to explain in detail what gastroparesis is and what how it makes you feel?

Well there is really no right way or wrong way to answer the question.  For some of us we are so tired of the question that we just give the simplest answer possible.  At the same time, we watch the person getting the answered shaking their head like they understand.  Then we thank to ourselves well at least I didn’t have to do a lot of explaining and that is over with.

Then there are some of us that are so angry about being asked all the time that we just lay it all out on the table.  Sometimes we go into so much detail that people are overwhelmed.  They stand there in awe just wondering how we are alive.  We must be extra strong.

Then there are some of us that vary our answer depending on who the person is.  A person that isn’t in our inner circle we might describe it as flu or just say I have a paralyzed stomach.  Then when we are talking to our inner circle we go into details to help them come to acceptance of what we really feel and how things are.  Then there are times that you want to spread awareness and you get blunt and to the point. 

Like I said there is no right way or wrong way to answer this question.  We are sick and we have an illness that most people have never heard of.  In most situations we are the first person that they have ever met with this beast we call Gastroparesis.  Think about it a second are you the first person that you know that have this monster.

The hardest part about explaining this disease is most people do not understand how their own bodies work.  All they know I get hungry I eat.  I feel the urge and I go to the bathroom.  Most people just think that is part of nature and there is nothing big happening when you are digesting your food.    I know there are times that I have the flu and have to watch what I eat.  I might run into bathroom issues of constipation or diarrhea but I take some medicine and I am back on my feet.  This is where the problem really starts.  Be honest did you know the importance of the movement of your stomach before you got sick with GP?

I have learned that most people are inquisitive because it is a shock to their system.  They can’t imagine that someone can’t just eat whatever they want.  They can’t understand that a person may be in pain when ingesting food.  That a simple few bites can mean a complete full stomach.  That eating can cause your stomach to bloat and make you look like your pregnant and you just took a few nibbles of food.

I also have learned that most people do not want all the details but they do want to be supportive.  Many are not trying to condemn us they just want the information so that they can treat us with respect and dignity.  With that in mind I have come up with my own way to talk about Gastroparesis.  In a way I am spreading awareness.  I am also sharing the fact that this is something that can strike without warning.  Also I am trying to debunk the notion that stomach problems are all in our head.

Get ready here is what I say….You might find that it is what you want to say…or you might just want to come up with your own answer.   The biggest thing that we need to remember though is most people do not understand how their body works so they can’t imagine how such an illness can exist.

I have Gastroparesis a physical illness that paralyzes my stomach.  See your stomach is supposed to contract to help food move throughout your digestive tract.  In fact, your entire digestive system is a long set of contracting organs.  When one part quits working and slows down or paralyzes it causes food to stop flowing throughout the rest of the system. 

I might not look sick because I am overweight but that is because my body has gone into starvation mode.  Many others lose weight and can’t even take a single bite of food by mouth.  I get sick and can’t eat a lot of food or the food you might be able to eat.  Your stomach is emptied totally within 4 hours and the rest of your system is going in full force by then.  For me it takes up to eight to twelve hours depending on what I eat for my stomach to empty.  Anyone can get this I consider myself one of the lucky ones because I am idiopathic or what you would say no reason to explain why my stomach decided to stop doing its job. 

Because my stomach doesn’t work right I live in a state of nausea.  I have pain in my stomach.  There are a lot of times that I get sick and loose the food that I have eaten hours later. There are no cure only treatments that help control, well what they control, of my symptoms.  I am lucky for right now that with my stomach pacer and medicines I am not hooked up to tubes. 

By the way I want to thank you for asking.  Hopefully I haven’t blown your mind with my explanation.  If you have any other questions go ahead and ask.  No question is too crazy for me to answer. 

True it floors many, but those that really are curious will just start asking me tons of questions.  I don’t just start the conversation unless someone asks.  If I notice that they are getting overwhelmed I turn down my explanation to a shorter version.  But most people that I have told this to are amazed.  Some even have said I have a friend or family member that might have this.  How can they be tested?  I also always have someone say that they will pray for me or wish me luck in getting better.

Again this might not be what you want to do.  Adapt it for yourself.  Amazingly this takes me about two minutes to share.  I have it well memorized.  I also have answers for most questions.  I share my blog address if they want more answers.  I also share G-Pacts address.  You don’t know how many people I have seen in other situations that remember this conversation and ask me how I am doing.   

For my fellow fighters keep on fighting and remember one day they will figure this out and we will have won.  Until then don't give up hope.  It is okay to rest on bad days, but on the good days enjoy life to your fullest because you deserve it.    

There is so much more and remember this is something that I live with and am writing from my perspective.  Talk to a doctor if you feel you may have this or any other disease because without proper diagnosis you will never get the treatment you deserve.

Long time..No Post

Hi everybody sorry it has been a long time since I posted.

Wanted to do a quick update and a challenge for all of you.

Meniere's Disease is still keeping me under the weather.  I wish the spins would stop.  Yet, I know that this is my new normal.  I still have the balance issues and always will but I am still fighting.  I learned that on my good days enjoy them.  On my bad days just relax and prepare for my next good day.

Gastroparesis well had a few bad weeks the last month. With my stomach moving slow I have extreme gastric reflux.  Seems the slower it gets the more reflux I get.  Well my insurance company was fighting the only medicine that will give me some relief from the constant burn.
And my GP said it was also going on strike.  I think it moved slower than ever before.  So back to my limited diet.  And the wait game started.  Finally got my meds and hooray after another week of burning and unable to eat the day came that I got back to my norm.  I hope this doesn't become a once a year ritual...

Had a long overdue knee replacement in December.  Knocked me down.  the anesthesia takes me a lot longer to overcome.  I notice every time it seems to change the balance and spinning and not in a good way.  To prepare for the surgery the pacer was turned off for about five days.  So I went into surgery very ill.  It took about a meek after it came back on to start to feel relief.  So the pacer is still doing its job.

I am still in the study for gastroparesis.  I really feel like that is my best way to help find a cure.  Which is the one thing that I pray for daily.

Now for the challenge.  I am a bigger supporter of a cause that is also dear to my heart.  I lost my grandfather, 3 great uncles and a true mentor in my life to adult cancer.  I started shaving my hair 7 years ago through the group Saint Baldricks.  It is an awareness and fundraising campaign.  All of the money goes to help find a cure for childhood caner.  I truly believe if we can cure kids cancer we can find cures for those cancers adults face.

If you would like to support me in my fundraising goal you can follow the link below.  If I can figure out how to upload the shave I will be posting it to the blog.  I am also become a knight of the Bald Table which means that I have participated for a least 7 years.  I consider this one of my biggest life achievements.  The fact is that I like being able to do something for others that have life changing illnesses.  It makes me feel like I am being a beacon of light for them just like their courage and bravery is a beacon of light for me.  To make any size donation just follow this link.  Thanks

https://www.stbaldricks.org/participants/deaconmichelle

For my fellow fighters keep on fighting and remember one day they will figure this out and we will have won.  Until then don't give up hope.  It is okay to rest on bad days,  but on the good days enjoy life to your fullest because you deserve it.    

There is so much more and remember this is something that I live with and am writing from my perspective.  Talk to a doctor if you feel you may have this or any other disease because without proper diagnosis you will never get the treatment you deserve.

DISABLED DOESN'T MEAN I AM DEAD

" I don't like the word Disabled because we shouldn't Dis anyone.  I heard this statement from Dawn Gee a local reporter the other day and t made me think about what it means to be disabled.  A lot of people assume that when you are disabled that you cant enjoy life.  Many think that those who are disabled are unable to do anything.

Let me make this clear there are things that I cannot do.  I cannot drive a car, because I never know when a vertigo attack will take me  down. I cannot mow my lawn, because the sound of the mower and the vibrations will start me on a spin I cannot just stop.  I cannot use a vacuum,  does the same thing as a mower.  I cannot work because I never know when I am going to hit the ground.

I also never know when I will be heading to the bathroom.  I also never know when I am going to fall asleep because the medicine I am on.  I also never know when sounds, sights and activities will be too much and I am done for the day. I also  know that there are a majority of days that I go into brain fog.  I also never know when the use of a computer will make me so dizzy  I cant stand straight.

Yet, what I also know is that I am not dead.   I have a mind that wants to be used.  I have a voice that wants to offer praises to God.   I have a heart that wants to give love to those that are in my life.  I also have a body though limited wants to live to find a cure.

Here is the truth all people have limitations.  Some people are more limited than others.  I do not know anyone that can do everything all the time.  Yet, people have a tendency to say that those that are worse off are disabled.  Therefor they are dissing us by thinking that we are unable of all things.

I want people to also know that everyone can do different things.  Just because someone has an illness doesn't mean that they have the same condition as a friend.  Nothing is more stressful than hearing my friend has that but they are able to function.  Even worse  you are not as sick as my friend that has the same illness.

People are a combination of many things.  People can have more than one illness and put together they may have limitations that others may not have.  Yet, just because they have limitations doesn't mean they are dead. People who pigeon hole sick people as unable of enjoying life are dissing the person.

I want people to know  that I am  not  dead because I have limitations.  My mind is one of the strongest things I have.  Even when I am in brain fog it still is functioning.  there is so much I wish I could do.  I would love to go on rides and watch movies.  I would love to go a restaurant and order whatever I want.  I would love to get  behind the wheel of a car and go for a long drive on a whim.

So the next time you see someone who has limitations  think about  what are they capable of doing.  Let's make it clear that limitations will change the way people do things.  Yet, just being able to write this every once and awhile gives me an outlet.  I know there are days that I will not be  able to write.  Yet, when I see people all over the world getting encouragement it makes my heart happy.

I want those that  are limited on what they can do to be encouraged.  Look at what you can do and be happy.  It might not be what you want to do but do not just  give up.  Those that keep going will find peace with their illness.  Those that give up are just setting themselves up to be miserable.

For my fellow fighters keep on fighting and remember one day they will figure this out and we will have won.  Until then don't give up hope.  It is okay to rest on bad days,  but on the good days enjoy life to your fullest because you deserve it.    

There is so much more and remember this is something that I live with and am writing from my perspective.  Talk to a doctor if you feel you may have this or any other disease because without proper diagnosis you will never get the treatment you deserve.

The statement that can hurt more than help...At least you do not have cancer

How many of us have heard these dreaded words.  For some reason believe that things are OK as long as you do not have cancer.  That the worse thing to ever has is Cancer.  Yet, people do not understand when they say this that they are belittling those that are sick.

People that have illnesses do not need to be compared to others.   Each person has their own limitations.  Yet, People want you to think that your illness could be worse.  That you should be grateful that you do not have a more deadly illness.

I have a hard time with this dilemma myself.  It is easy to say I am glad that I don't have this or that. Sometimes when we look at one situation or another we can feel blessed that we are not worse off. Yet, this is saying that other people are less fortunate because we think one illness is worse than what we have.

I am shocked at how many of my friends and family do not understand that every person has something that limits their ability.  You might not be able to walk, to hear, or to eat certain food.  Yet, what we have to remember is that we are not to judge what we can't or can do to what others can.  

We are not our illness.  We may be limited by what we can do but it isn't who we are. Our lives are so much more.  People have a hard time accepting limits from people when they can't see their illness.  It is easy to say that someone on a cane or walker is disabled.  Yet, someone else  who has balance issues might not be to the that stage yet.

We need to teach people that they have to accept us the way we are. Not to judge our illness with others.  There is no one alive today that doesn't live with some form of pain or disease.  Yet, there are those that have become disabled because of their illness.  We as humans need to accept that just because someone isn't on death doors doesn't mean that they are strong and healthy.

Yet, there is something else that we can take from this statement.  How do you think it feels to people that are living or are survivors of cancer to hear other diseases compared to their illness.  I can only imagine that they feel as people think that they are doomed.  Yet, there  are many survivors of  cancer.  We need to make  sure that we do not set up people with cancer as the doomed illness.  The hope is that no one dies and there is a lot of research that is working to defeat it.

The next time that you start comparing someones illness you need to think about how it will affect them.  Are you belittling the way they actually feel by saying others feel worse.  We also need to understand that not all people with the same illness will react the same way.  It is amazing when you hear people say you cant have that because my sister does and she cant do the things you are doing. Think a minute how that has to feel to the recipient.  It is like they are making up their illness.  Yet, even people that are "healthy" are not all able to do the same thing.  Each of us are different and we should be looked at that way. 

Takeaways:

Bless those that are better off in the way they feel.  Bless those that can do more with their illness than others.  Bless those that can overcome the stigma of their illness.  Bless those that have a positive spirit.

Do not compare those that are sick.   Do not compare one illness with another.  Do not compare people with the same illness.  

Try to understand those that have silent illnesses.  Acknowledge that the way they feel is real.  Help them live up to their potential.  Accept the things that they cannot do them self.  Pray for those that are on their last stand.  Work with those that need an extra hand.  

Pray that sickness and disease will end.  Pray that those that are sick will make recovery.  Pray for cures for illnesses that people have.  Pray for peace for those that are struggling.  Pray for healing to come to all.

Most important of all be real.  Accept that everyone is struggling with something.  Don't try to compare situations.  Understand that the person who is sick is living their own turmoils.  Be supportive and listen when they need someone just to talk to.  You will be amazed how your life and theirs can change when people are  showed a little love.

For my fellow fighters keep on fighting and remember one day they will figure this out and we will have won.  Until then don't give up hope.  It is okay to rest on bad days,  but on the good days enjoy life to your fullest because you deserve it.    

There is so much more and remember this is something that I live with and am writing from my perspective.  Talk to a doctor if you feel you may have this or any other disease because without proper diagnosis you will never get the treatment you deserve.

Stop and Smell the Roses

Life can sometimes overwhelm you.  You start worrying about things that are affecting you that you really can't change.  You might stress over your health.  You might be stressing over friends that don't understand.  You might be worrying about the loss of independence.  You might be worrying about the food you cannot eat.  You worry about the things that you cant do any longer.

Yet, I am here to tell you that there is something that you can change.  You can start by stop worrying.  Your body can do better if you stop the worry.  I know that this is a lot to ask of yourself.  I have been there.  What I learned is if I let the things that were bothering me go I actually enjoy life better.

Now there are days that I start to worry about the things I can't do anymore.  I use to have so much independence and I wish I could have it back.  Yet, what I have learned is that people want to help you.  When they see that I need help my friends just step right in.  In fact, most don't even need to be asked.  They can look at my eyes and realize that it is a bad day for me.

Yes, there are times that I stress over the job I lost because of my illness.  Yet, I rejoice in that God who is my Higher Power has provided a way for me to have income.  It isn't the same and never will be, but I am blessed with not having to be stressed over money and trying to work.  When it was all I could do was to stay vertical and out of the bathroom.

See we need to Stop and Smell the Roses.  Rejoice in the little things that happen each day.  When you take and can get up in the morning take a deep breath and find something to rejoice in.  I even enjoy watching TV or just taking an afternoon nap.  I enjoy days when I get cards from friends.  I am encouraged when I get positive emails.  See these are little things that you can enjoy.  

I encourage everyone of you that read this to find something that happened that was positive in your life.  True there seems to be days that everything seems to be going bad.  Yet, there are things that you can find that happened to you that are good.  

Take a few minute and don't stress and see the beauty that is you.  For today I am blessed by you reading this simple post.  Thank you for giving me something to be happy about.  You have blessed my day now look around and see what you can find in your own life that is a blessing.

For my fellow fighters keep on fighting and remember one day they will figure this out and we will have won.  Until then don't give up hope.  It is okay to rest on bad days,  but on the good days enjoy life to your fullest because you deserve it.    

There is so much more and remember this is something that I live with and am writing from my perspective.  Talk to a doctor if you feel you may have this or any other disease because without proper diagnosis you will never get the treatment you deserve.

Simple Lessons to Learn if you have a Silent Illness

1. YOU ARE NOT ALONE...  We often think that we are the only one's suffering.  Because even we cannot see those around us suffering in silence.  Our illnesses are hidden well inside our body.  Yet, if you take the time to get to know people you will soon find that a lot of people are just like you.  
2. DON'T BE MAD AT YOUR BODY... Now your probably saying how can she dare say this.  But it is true.  If you get mad at your body the next thing that happens is usually a flare up.  
3. DON'T BE SHOCKED IF YOU HAVE MORE THAN ONE SILENT ILLNESS...  Most of us have multiple illnesses that we deal with daily.  Some have caused the illness we have now. Others are just out of the blue illnesses.  
4. THINK POSITIVE... Each and everyday try to think of something to be positive about.  There is a reason that you are still here on Earth.  So find the positive in situations and your whole attitude can change.
5. DON'T HIDE FROM YOUR FRIENDS AND FAMILY... It is easy to just stay home and not be around others.  We don't want people to worry about us.  We don't want people to try to fix us.  So we stay barricade in our homes to hide.  Instead enjoy others company and let their thoughts and concerns be their own.  You can't fix them just like they can't fix you.
6. SPREAD AWARENESS...  It is important to share with those that you meet about the illnesses that you are going through.  Now this doesn't mean that this should be the only topic of your conversation.  When the time comes and the questions start.  Give them the best answers and you will see that you can change people's feelings about your illness.
7. BE PROUD OF YOUR ACCOMPLISHMENTS...  Another subject that is hard to deal with.  We are so concerned about just trying to get our body to keep working that we forget about the things that we have done in life.  We need to be proud of both the big and little things that we accomplish today.  It might not be a historically changing accomplishment , but if you are reading this then you woke up.  That in itself is a great accomplishment.  
8. CHERISH EACH AND EVERY DAY...  Everyday that you wake up is a new day to see the beauty around you.  If you feel so bad that you can't go outside and enjoy it there are simple things that you can do.  Open your blinds let the light come through.  Call someone just to say hi. read that book that you have been waiting to do.  Today is a day that you can do anything that your mind lets you do.
9. NEVER EVER GIVE UP FIGHTING...  I know you are like me and there are days you wish you could just turn in the towel.  Enough is enough.  For me out want to stop the spinning and the nausea.  Thinking it would be better to just stop.  Yet, deep down inside I am still wanting to fight. That tiny spark keeps me going.  Find your spark and you can make it one more day.
10. HELP FIND A CURE...  You might already be doing this in some way or the other.  It is very important that you do this daily.  Things that people thought would never have a cure have.  So why give up hope.  If possible join studies and maybe something that they learn from you will lead to the answer.  Help support causes that are trying to find cures.  

So there you have it ten simple steps to help get you through the fight of a silent illness.  You might have been hoping for more.  Yet, learning to accept and move forward with your illness is the first and most important step.  Don't let your illness drive your life.  Instead drive your life and put the illness in the passenger seat.

For my fellow fighters keep on fighting and remember one day they will figure this out and we will have won.  Until then don't give up hope.  It is okay to rest on bad days,  but on the good days enjoy life to your fullest because you deserve it.    

There is so much more and remember this is something that I live with and am writing from my perspective.  Talk to a doctor if you feel you may have this or any other disease because without proper diagnosis you will never get the treatment you deserve.

food, food everywhere food---WHAT IS ONE TO DO

Family Reunions.  Church Picnics.  Friend's Barbecue Parties.  Marshmallow Roast.  Hot Dog Roast. The List goes on and on.

What is someone to do when they can't eat or drink without being sick?  Do we hide and not go to the events?  Do we go and feel embarrassed because of the situation?  Do we go and try to eat only to get sick?  Do we go and hide in the crowd so no one notices eating?

I say go and have fun.  If people cant accept you then are you with the crowd?  Wear your green and show be prepared to answer their questions.  Don't be ashamed that you cant eat.  Don't be ashamed that you have to use your TPN, feeding tubes, or your own food and drink.

See what people need to learn is there is more to life than food.  My roommate said it best the other day. "Why base your life on what you are going to be able to eat next?"  I run into this a lot it stresses me out.  Especially when I have to be friends that haven't seen me for awhile.  When they want to meet at a restaurant, I start wondering is there anything that I can eat there.  Are they going to think I do not have the money to pay for it when I ask for a kid's meal?  What happens if I go into a bad flare that day and can't eat anything?  The questions are never ending.

So this is what I do.  I tell people right off the bat that I have to be careful with what I can eat.  I share that my stomach just doesn't act like everyone else.  I stress that the reason I am t events is that I want companionship.  I want to be around people and not hide because of my illness.

What I have learned is that people accept me when I am honest.  My close friends can look at me and know when it is a bad day.  People that know me ask me if there is something special that they need to have if I am eating with them.  For example, every Sunday we have a meal at church.  No one is shocked if I don't eat.  In fact, I don't get any strange looks.  People understand that everyday I might feel different and they have come to accept it.

I also have learned when I am meeting someone for the first time I slowly introduce them to Gastroparesis.  I let them know that I can't eat like them and not to be embarrassed to eat around me.  Once people learn that their eating doesn't offend me the easier it is.  When I either order small amounts or pull out my own food I tell them that I am happy with what I have.

So the next time there is event be prepared to enjoy.  Take what you need and don't be ashamed.  Help people understand your illness and you will see that they come to accept you the way you are.  There is nothing like being around people and just having the chance to talk and have a good time.  If today you aren't feeling good let people know that you will take a rain check.  Don't be afraid to do it at your own pace under your own conditions.

For my fellow fighters keep on fighting and remember one day they will figure this out and we will have won.  Until then don't give up hope.  It is okay to rest on bad days,  but on the good days enjoy life to your fullest because you deserve it.    

There is so much more and remember this is something that I live with and am writing from my perspective.  Talk to a doctor if you feel you may have this or any other disease because without proper diagnosis you will never get the treatment you deserve.