Permanent Gastric Stimulator

In my last blog I discussed the placement of a temporary gastric pacemaker.  This blog is about the permanent one.  Others will have different views this is how I have responded so far.  Remember I have only been living with this 5 months so I am still learning a lot.

For starters, would I have done the surgery if I knew then what I know now?  The answer is a resounding yes.  Does that mean I am cured?  No I still have good days and bad days.  I still have nausea but nothing like I did before the surgery.  When I have my worse days now they are about the same as my bad days before.  You might be asking what does that mean?  My worse days before were those when a drop of water or a little puree mad me deathly ill.  Now my worse days are filled with nausea and bloating.  Do I still have days when  I can't eat?  Yes, and I know as soon as I wake up if it is going to be one of those days because me and an my old friend have a morning conversation.  (For those of you with DTP you know exactly who I am talking about, but the only thing that my friend can do is listen and flush the bad news away.)

Since I had already had the temporary we knew that I would more than likely respond to the permanent one.  I am glad I went through with the temporary placement first.  The permanent surgery is painful and I spent 5 days in the hospital.  I came home on pain pills.  I also had to be careful coming home when it came to lifting and bending.  I don't feel like I am back to where I was before the surgery as far as strength and energy.  But this might be my new norm which we all know changes over time with Gastroparesis and Menieres. (Menieres has decided to go into a 5 month flare up without a day of not spinning or being off balance.  Sometimes I wonder if having 3 surgeries in two months was just too much for my body to handle.)   

I also have pain on my right side where the pacer was placed.  This is very annoying and uncomfortable for me. Yet, this is the way I usually handle surgery so it might only be me that would be hurting this long after surgery. For those of you that have read Harry Potter my scar and his act the same.  But my It who should not be named is my hand.  I have self diagnosed myself with a bad case of Twiddler's Syndrome.  (Will have to do a whole blog on that.)  If you haven't read the Potter series this example may be more for you. Three years ago I had a endolymphatic shunt placed for Menieres disease and over the last month and a half the stitches have decided to surface behind my ear. Which means my body doesn't like them.  Because of the type of stitch I am pretty positive that it was used during this surgery. I wonder how many years it will take for them to start surfacing. 

Dr. Thomas Abell is my motility specialists and did the programming and placement of the temporary pacer.   He is handling all the motility issues.  I also have another GI doctor Dr. Martin Mark, that works with my GERD issues.   Dr Robert Cacchione was the actual general surgeon.  During my procedure they not only placed the pacer but also did a biopsy of my stomach muscle to help determine the cause of my Gastroparesis.  Lucky me, not really, I am one of the patients that is listed as having idiopathic Gastroparesis.  The hope is that once the biopsy results come back we have a cause so that I can be treated for that which should help with the Gastroparesis.

Due to the pain medicines I also started having a major change in other areas of my digestive tract.  I know now that even though my stomach empties slowly now my colon empties extremely fast.  (Smart pills can detect things that other test might have missed.)  So we are going to start looking into that and why it empties in less than a half an hour.  

Make sure to read the patient manual if you aren't given one at the time of the surgery you can get the information from the website.  http://www.medtronic.com/wcm/groups/mdtcom_sg/@mdt/@neuro/documents/documents/ges-ent3116-ptmanl.pdf .  If you still have concerns talk to your doctor and they can answer your questions.

I did go back to work for a few days, but the Menieres and the surgery were just too much this time.  Between my head spinning and recovering from the surgery I just could not pull it off.  It is devastating to have to throw in the towel.  But, I know I fought as long as I could.  My ENT wanted me to stop working about this time last year, but i tried to keep going.  So it isn't as much giving up.  I actually fought the battle until my body said time to rest.

One of the other changes that has happened effects my stress reliever photography.  I am one of those people that likes to take pictures as close as I can.  My favorite setting is super micro because I get a thrill of catching the smallest of God's creatures and plants doing their daily chores.  I know it is crazy but if they can do it so can I.  Now that I have my stimulator bending down to get those shots is impossible.  I wish I could do it, but there is no way.  (Plus with the Menieres if I bend I am going to hit the ground.)  Thank goodness for telescopic lenses and a very good camera...also thanks to a friend who scouts out places and drives me to the right spot so I do not even have to get out of the car.

I have had several visits so far adjusting the stimulator seems mine decided to turn itself off at one point.  Which scared me when it was discovered during a visit.  We are not sure how long it was off, but I do know for a few weeks I thought that I had done this crazy surgery and now it isn't working.  I keep a sharp eye on it now.  More than two or three days feeling bad and the Doctor will be hearing from me.  

So I already know the question you are going to ask would I recommend the procedure for everyone?  (I know why you are looking at this you want to know if it is your best option.)  That recommendation is not mine to make.  The physician will do test and will lead you on what options are best for your individual case.  Remember some people respond absolutely wonderful to the stimulator.  While others get a temporary reprieve only for it to wear off and they go searching for more answers.  There are others that it did not help or they had to have it removed for various reasons.  You and your doctor know you best and the decision to undergo this or any other surgery should come from them.  It is still your decision after weighing all options.

Well, that is my take on my pacer.  I am glad to have had a physician that guided me to something that would work.  I am not cured.  Yet, I am hoping to make it until that happens or at least enjoy what time I do have a little better than before the pacer.  I keep praying that everyday it works and thank God for both good and bad days.  I am tired, head spinning and tummy wants to start acting out so I am out of here.  

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. 

Temporary Gastric Stimulator

Me and My Temporary Pacer

You may have heard of the Gastric Stimulator often times called Gastric Pacemaker.  If you look at the picture above you will see what the actual stimulator looks like.  It is amazing what this little thing can do.  But before  I talk about the permanent  pacer.  I wanted to give information about the temporary pacer.

Not all physicians perform the placement of a temporary pacer.  My physician is using this method and I was glad to know that it would benefit me before proceeding with the surgery.  On the other hand most physicians will not offer the pacer if they do not think it will work.  So it is up to you and the physician if a temporary pacer is needed.

The temporary Pacer allows physicians to know if the permanent pacer is right for you.  It works like the permanent and actually is the same machine. The procedure is very different and since this is a temporary pacer the effects will only last as long as the wires are attached to your stomach.

Before the pacer is placed the physician will need a baseline gastric emptying study and a EGG. This will help with both the diagnosis and information on whether or not the pacer works for you. This test are relatively easy you can go back to my blog on the emptying study if you have questions on that.  The EGG is a very simple test in which electrodes are placed on your abdomen and the electric frequency of the stomach is monitored.

The procedure to place the temporary stimulator is performed by an upper gastrointestinal endoscopy.  The procedure is usually performed under conscious anesthesia.  When I had mine placed they had to use general anesthesia, but that is basically due to the fact that I do not do well with conscious sedation.  (Imagine telling your physician, "So that is what my Colon looks like."  When you are in the middle of a colonoscopy.  Been there and bought the t-shirt so they do not even use it for minor procedures.)   This is an outpatient procedure and only side effect is dealing with normal anesthesia affects.

The surgeon places two sets of temporary leads in your stomach.  This way if one detaches or doesn't work as well you will have a backup.  The wires are then brought back up your esophagus and brought out your nose.  If you have had a NG-Tube you will understand the effects.  The wires then are attached to a stimulator that you carry with you.

The biggest thing is that you need to make sure that you do not get it wet.  You will need to make sure that it is properly attached to your face so that the lines will not be pulled out.  I discovered that Tegaderm patches worked best for me (generic did not want to stick).  You can work or do other activities again remember that the stimulator needs to stay dry.

In about a weeks time you will come back for a second gastric emptying study and EGG.  There is also an appointment with the physician to determine if you felt like the pacer worked.  Sometimes the test show some improvement but you may feel something very different.  The concept is monitoring symptoms if you have had improvement the pacer is right for you.

Now here is where things get crazy you would think that the physician would remove the wires while you are there for the appointment.  Yet, in actuality the physician will allow the electrodes stay until they fall out on their own or at the day of placement of the permanent pacer.  I will not forget that happening around 4 am three days before my permanent pacer surgery.  Felt like little needle pricks as it slowly came back up my throat and out my nose.

If you have never had a NG-tube there are a few things that you might want to consider.  There will be irritation from the wires.  I solved the issue by using a small tegaderm type bandage on the side of my nose.   The other thing that shocked me as that as you drink or eat the wires will slide and tighten.  Very important that you allow for a little slack when you are attaching the wires to your face.

I felt better in a few days, but it did not mean I was healed.  The goal is to help with symptoms.  The fact that I felt less nauseous proved the stimulator worked.  The next step for me was the placement of a permanent pacer.  (I will talk about that in another blog).  For those that it doesn't help physicians look for other measures.  So do not give up hope the pacer is just one of the extreme lines of defense that physicians are using to treat digestive tract paralysis.

Well, I am calling it a night.  Exhausted and my tummy has decided to take revenge tonight.  It is a constant battle but I will not give up the fight.  Hope everyone else has a good tummy day tomorrow and remember don't ever give up.  We are in this fight together until there is a cure.

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 Difference Between Being Compassionate and Being Sorry

I mentioned in my blog yesterday that there are times when people hear you talk about your illness and they tell you they are sorry.  This is an emotional response they have because of their immediate reaction of hearing of your illness.  Many times they have never heard of such diseases and they are in shock.

People that are Sorry often times are feeling ashamed of themselves for the things that they were thinking before they knew you were sick.  They saw you stumbling or rushing to the restroom numerous times and they have made assumptions that you are drunk or purging.  So their guilt due to their ignorance rolls out of their tongue as if they are sorry you have the illness.

There are people that are generally sorry that you have the illness.  But are relieved that it is you not them and that has caused them to be sorry.  They also are relieved they had never heard of it before and are relieved their family members don't have it.  The angst in finding out that there is an illness that can effect someone that they never heard before is devastating to many.

We have all experienced that shocked look on someones face when you have to explain an illness that they never heard of before.  It might not be your own but a family members illnesses.  The person goes straight into a place of relief then remorse.  The remorse comes because they feel guilty for what they were thinking or the fact that they were glad they don't have it.  

Now that I have explained being Sorry it is time to understand being Compassionate.  Compassion is much more than an emotion compassion is a response that shows the individual you understand. That you are there for them that you are not going to let them go through this alone.  People who show you compassion are in it for the long haul.  They do not necessarily have to be your best friend or family member in the beginning.  But due to their interaction with you they will take on these positions.

Anyone can show compassion for others.  In fact, most people have someone that they show compassion to.  People choose who they want to stand by all the time.  They would give life and limb for that person and will defend them to the end.  They search for answers they hope for cures and they pray endlessly for them.

There are other people that are able to show compassion to numerous individuals at one time.  A good example of this would be Pastors or Deacons.  One of the reasons that they take on those roles is because the feeling of compassion swells from their heart.  It doesn't mean others can't be that way.

When you are lucky enough to find someone that shows compassion for you do not abuse them.  They also need to have compassion shown to them.  For there are often times that they attempt to take the weight of what is wrong with you on their own shoulders.  You must make sure that you give them the opportunity to allow that weight to slip off of their shoulder so that they can enjoy stress free times.  When you are able to return acts of compassion to the ones that show you compassion you grow.

I have a few people in my life that truly show me compassion.  They do not feel sorry for me and they push me to be my best.  They encourage me to do things that I would just not try to do.  Instead of feeling sorry for me they encourage me and have made me a better person.

My family and close friends are always there for me.  They may not see me everyday but they do something more important they always lift me up in prayer.  They know that I do the same thing for them.  They know how important are to me and they have actually become my biggest supporters.

So when you see the difference in these two groups of people it changes how you deal with individuals.  A big question that comes up is how do  I deal with people that only feel sorry for me. When you hear that random I am sorry from a stranger a lot of times I just walk away with a thank you and may God give you peace.  It cuts them loose and lets them deal with it on their own time.

For my friends it is a much different situation because they are dealing with the loss of a part of me that they haven't come to terms with.  To them I try to encourage them.  Let them know that we can get through this together.  That I am praying for them just like they are praying for me.  Turns out that is what they need.  Because they are really sorry for something that they wish they could change but can't.

Well,  hopefully this helps explain the difference.  I hope it also gives you comfort and encouragement.  There are people that really do care for you.  that you have the power on how you react to individuals.  So if someone is sorry make sure that you acknowledge it.  Because they may be coming to terms with a loss that they feel will separate them from something that could have been.

When you run across your supporters that give you the compassion you need. Make sure to give them your support for the causes they fight.  Because they need to know that you are there for them as much as they are there for you.

Well back to bed I go.  Been a very dizzy day...tomorrow will be a long one...but I am just glad I have compassionate people In my life that give me the strength I need to make it day by day...Night

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.  

No I Am Not Drunk...I Can't Help I Am Not Walking Straight As I Rush To The Bathroom

How I see the world...always with a blur

Both of my illnesses effect me in a way that the above statement is extremely true.  Meniere's disease effects how you balance.  While on the other hand Gastroparesis can push you to restroom.
The stigma of this issue is what I want to talk about today.  How do we those with chronic illnesses deal with people that don't know us but assume that our illnesses are from something else?

I cannot count how many times have looked at me as I leave establishments that sell alcohol with disgust.  I do not drink yet if you were not sitting at my table you would not know that.  when I stand I have a tendency due to balance issues to almost stumble as I am walking.  People give you the look and you want to go over and tell them hey I am not drunk.

Would they listen?  Why should I have to explain things to strangers?  Yet, the stares make me uncomfortable and the hair on the back of my neck stands.  I do not know how many times I have announced as leaving places that I am not drunk but have balance issues.

I remember being at a fast food restaurant I was getting a drink while everyone else with me was eating.  I was trying the going without a cane trick.  I hate having to depend on something to keep me vertical.  At the time there were moments that I could get by without it.  So as I started to my seat I realized that I should have brought it in.  The look of the police officer as I had to grab the counter and table tops to get to the table was priceless.  Yet, another moment when I felt that I had to explain I am not drunk I just have a balance issue.

Then things get more fun because there are times that my Gastroparesis flares up when I am out and about.  Nothing like having to get to the bathroom fast while stumbling.  I know I try to wait until I get home but there are times that you can't help it.  Where you are is where it is going to happen.  So people see the stumbling the rush to the bathroom and then if they are really nosy they hear things that wished they didn't.

It is those moments that I have the worse time explaining what is going on.  People judge you without knowing you and it makes life very difficult.  People assume that you are sick because of something that you did.  Our society bases their knowledge of illnesses on what they hear about.  How many have even heard of Gastroparesis or Meniere's disease.  The fact that a person has both is even more rare and causes a lot of questions.

I have even had close friends misunderstand my illness and see me going to the bathroom after eating and thinking it is because I just ate too much.  I have seen people that have known me for years and assume I have fallen off of the wagon when they see me walk.  They have no clue the embarrassment that goes with this.  Stares and whispers effect a person tremendously and have a way of bringing down a person's self esteem.

A lot of people with illnesses start abandoning going out because they cannot deal with  the symptoms that goes with characteristics of their disease.  If you can't walk a straight line because the Meniere's or another illness has stripped it from you do not be ashamed.  If you have Gastroparesis or another motility issue that forces you to the bathroom do not hide in your home.

You have the rights to go out and about and enjoy life.  The only way to truly enjoy life is to do the things you like best.  Do not let an illness keep you down.  If individuals don't understand don't waste your time explaining it to them.  Live your life to the fullest.

I try my best to remember that I can't control what is happening with my illness.  It determines how it is going to effect me.  What I can control is how I respond to individuals that don't understand.  I have started turning my symptoms into an awareness campaign.  It is a way of turning this on those that don't understand.  It also gives me the control that I really needed to overcome the feelings I was having with the illness.

So when someone sees me stumbling and they begin staring I start my conversation.   Here is a good first liner and it helps break the ice.  Wish I would have at least enjoyed getting drunk.  Then I have the opportunity to explain to them how I have a vestibular illness called Meniere's   that effects a large portion of my life.  I go into a quick definition and explain that I have tried several things including surgery.  I tell about how I am losing my hearing and how there are times that all I can do is lay in bed.  The looks start disappearing and occasionally you hear someone say I am sorry.  I will write tomorrow how to deal with the I am sorry people.  But it works the stares stop and they leave me alone and I can continue what I am doing.

I also have a great way of handling the Gastroparesis in public.  If it happens I often take someone to the bathroom especially if there is more than one stall.  As people come in with those crazy statements or stares.  My cohort makes this statement are you okay.  I can't wait until they find a cure and you don't get sick any longer.  Then immediately people stop thinking that you are drunk or purging.  It also helps if your cohort mentions Gastroparesis and if the other person ask the question what it is there is the moment to bring up the illness and the symptoms it causes.

Believe it or not the best awareness campaigns happen when you are just being you.  People find out that they should not judge a book by the cover.  The stereotypes get destroyed and you can be yourself.  The fact is most people are dealing with something themselves and when they see how you are being positive and keep on going it gives them hope.

So off to bed I go.  Today was a crazy day.  Spent most of it laying down trying to keep the spins from happening.  Then when you get up at eleven at night it is kind of hard going right back to sleep.  Especially when your tummy decides it is time to wake up and cause you to be nauseous.

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.  

God has a Sense of Humor even when We Think We Are Alone

Isn't there times when we all think God has abandoned us.  Have you ever  felt so alone that you do not thing anyone truly cares.  That if something happened to you that you would  just be forgotten.

I always thought that when I left work that it would be on my own terms.  I did everything that I could to stay at work.  There were times during lunches while the rest of management had meals I would eat my baby food.  There were times when I had to sit all day or balance using  a cane so I wouldn't fall on the floor.  Yet, I didn't stop working and I fought until there was no more fight left in me. Yet, when the end came I didn't think it would come the way it did.  After being forced out by my illness I felt as if I had been defeated.

The sad part is that the depression soon followed due to the fact that not only was my job affected but was so many other things.  Even doing this can take every bit of energy I have.  My favorite thing going to church became so difficult.  I even had to start wearing earplugs at every service and there were times that I had to leave in the middle to lay down.

This is when life went from bad to worse.  I started feeling like no one would miss me if I did just disappear.  How was it that I was going to keep going feeling as miserable as I do?  How could I expect others to have to do so much of what I used to do? Then at last my escape of life was taken when driving a car was stripped and then even riding a car became very hard.

So I figured that God had truly also left me.  One night in the middle of frustration I decided it was  time that I took back control.  That it was time to end it all.  Why put myself and others through anymore of this.

I decided that the quick way would to be hit by a car. I actually felt like if it was a car it would be my final way of winning my escape back.

Here is where God got the last laugh.  As I sit waiting for a car to come by it never did.  There is never a time day or night that cars don't go by.  So after quite awhile of waiting I looked up to the heavens and said please send me my answer.

About that time I heard something I knew a vehicle was coming down the street.  Surprisingly God had sent a much different answer.  Instead of a car, bus, truck something that would let me do what I wanted to do God sent a moped.  Right then and there I knew I was not alone.  Actually God was there and giving me my hope back.

Right then and there I decided that God had sent me the answer I truly needed.  I wasn't useless in fact God had something planned for me.  I came back in the house and started writing my first blog.  Then my spirit began filling with the life I needed.   I knew that God wanted me to start helping others.

God began feeling thoughts of other things I could do without leaving my house.  Things I could do on my own time.  If  I couldn't stand and had to lay down that would be fine.  Days when my tummy was fighting me would not interfere.  That it was going to be blessed by God.

There are days that I am still depressed who wouldn't be in this situation.  But the best part the thought of ending it all has disappeared.  I know God will not let me do something stupid like that.  Amazingly friends and family started showing up or calling when I started going blue.  I found that there were people still out there that cared.

People that know me might be surprised by the fact that I thought God had left me.  I am very spiritual and believe that in all the good and bad times God has been there.  Yet, what I discovered is that I needed to know what it felt like to believe that God was gone to understand others.  So right now if you think you are alone you are not.

God is there even when you don't think so.  In fact, the story is so true when you are at your lowest and don't feel you can take anymore.  That is when God is carrying you.  God doesn't leave those that need support.  So even if you are going through one of those moments right now God is carrying you.  When you don't need to be carried God is walking with you.

Lastly, one of the things that God gave me to help me help others was my ability to pray.  I know that even if I can't sit up I can pray.  I might not have met you, I might now know your name, I might not know what you are going through.  But if you are reading this right now know that I am praying for you.  I know that God is using this and it is blessed.  So I promise you that you are not alone and that all is good.

Well time to lay back down.  Today has been one of the bad ones but it is okay.  Because God was there.  I wished I could have done other things but God said rest.  Nice to know I was being carried I truly needed that today.

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.  

How to Explain Meniere's to an Outsider

When you suffer from an illness that is silent how do you explain it to others.  This is the hardest thing that people have to deal with.  Your love ones watch you and they know when it is bad.  They know when you are having moments guided by your illness, yet the rest of the world has no clue.

I have been trying to come up with a way to explain Meniere's to some of my friends and family for a long time.  When you tell them that you have vertigo they have a little understanding.  Yet, in most people's eyes vertigo comes and goes it isn't something that effects your whole way of life.  Yet for me this disease makes a lot of decisions that I would like to make but now can't

I believe I have a way of explaining the disease so that those that never suffer can have a taste of what we go through in a days times.  This would be a fun awareness idea.  The only way to explain the disease is to experience a good old fashioned vertigo attack.  To make it more fun add silence and a ringing in the ear like none other.

So here is the trick create a type of silent, vertigo, imbalance, ringing that will give a person a taste without getting hurt.  I also have added my idea of a visual stimuli that gives them that added piece of frustration that a lot of suffers deal with.

*Disclaimer if you have Meniere's the very thought of doing these task may turn your nonspinning day into a spinning day.  Also please don't do the below without asking someones permission.  If you do it and someone gets hurt it is all yours.  Most people will not have to do anything but read the instructions and understand a day in our life.

Steps

1. Place chair in middle of a soft floor mat
2. Person needs to sit in chair
3. Place head phone on person with a slow buzzing sound in one ear.
4. Place ear plug in other ear.
5. The person then should follow the instructions below as quickly as possible

• stand
• sit
• stand
• turn in a right circle
• sit
• stand
• turn in a left circle
• sit
• stand
• turn in a right circle
• turn in a left circle
• sit

1. Person now views the most obscure photo...eye art (here is one of my photo's for an example.)

The last step is let them take off the headphones and ear plug and walk a straight line.  *You may need to have a cane there to help keep them from falling.

Well this is the best way I have of explaining it to an outsider.  I have a feeling that if they follow these steps or just think about what it would do to them they would never question your spins again.

For those of you with Meniere's hope you head ain't spinning too much today.  I know just thinking through this steps gave me the spins.  I am ready to start my awareness campaign.  After some medicine and a very long nap.

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 Nasty Egg Test or as Physicians like to call it Gastric Emptyng Study

As you can tell from the title this is one of my least favorite test.  Yet it is essential for proper diagnosis of Gastroparesis.  This test determines how long it takes for your stomach to empty in a very controlled environment.

Your physician will follow up with other test if it is determined that your emptying is too fast or too slow.  Yet, this very vital scan gives a lot of information and is a baseline in getting the proper diagnosis so that you can receive the best care.

Now why I call it The Nasty Egg Test.  I have a hard time with eggs no matter when I try to eat them.  They make me quite nauseous and I do my best to avoid them.  The test has very strict guidelines to ensure that every test is exactly the same.  So making sure to keep the egg down is essential so that the physician can gain as much information as they can.

The test gets a little more difficult for me to handle because not only is there eggs involved but also toast.  Even though I do not have an allergy to gluten.  Bread makes me quite ill.  I have my own theory that it expands in your tummy and takes more room, that is what I tell people when it comes to bread.

You also get the joy of a very controlled amount of water that is usually not iced due to the fact that they need to control the temperature.  Again my own opinion is that the water fills any holes left behind.

Here is another way of explaining how I see things.  You may have actually seen or heard someone describe this before.  Take a large bowl and fill with large rocks looks like it is completely full right.  Now take some small pebbles and sprinkle over top the bowl. They will move down among the larger rocks.  Now you think that it is full but guess again.  If you now take sand and pour in the bowl you will see that there are more gaps filled in.  Lastly take water and fill the bowl until you cannot get anything else any it.  Then you will see how I picture the adding of the above ingredients to my stomach.

Yet, there is one more twist in the example above the bowl cannot expand.  Yet, with your tummy you can pump it up until that it is more than full.  The bloat which if you suffer from Gastroparesis you know all about it.

So now other than eating the above ingredients there is one more part to the study.  That is the small amount of radioactive material added to both the food and the water.  This ensures that the pictures that are taking can completely monitor how fast your tummy empties.

After eating and drinking the study involves a series of a few scans.  They really do not hurt and only last for a very short amount of time.  Here is where things kind of get a little crazy.  You must keep everything down or you will have to repeat the test on another day.  To help with this make sure to take something like a book or game to keep your mind off what is going on.  You will be sitting for several hours and there is nothing like worrying about a test to wear you out.  The part that I have the hardest part with is the nausea during the waiting game.  Yet, this is one of my worse symptoms so it isn't really shocking that it is going to bother me during a test like this.

So there you have it the study itself isn't bad, but if you are like most people with gastroparesis it is the eating that is bad.  Which is probably why you are going to have the test to start with.  So be patient and it doesn't help to pray to help keep the nausea away.

Little footnote if you do have a slow study or fast one be prepared this will not be your last emptying study.  Over time you tummy will make more decisions on how it wants to act so the physician will need other studies as time goes by.

Well there you have my explanation of a gastric emptying study.  If you have the pleasure of having one of this lovely test and you agree with the new title please let me know.  I think it would make a good definition change in the MD books.  Until next time.  I see a long nap ahead for me.

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.  

Gold and Silver are two of my favorite colors and heres why

It is amazing how many awareness ribbons exist.  Yet, how many of us really know that they are out there and what they mean. Time for a quick quiz.  How much do you know about colors and what causes they represent.  *Answers are at the bottom

1.                                                    ____Breast Cancer
2.                                                    ____Brain Cancer 
3.                                                   ____Lung Cancer
4.                                                  ___AIDS
5.                                                  ____Childhood Cancer
6.                                                 _____Autism

Now to answer the reason why gold and silver happen to be two of my favorite colors well they represent spreading awareness for a disease that has caused me great loss.  These colors are to spread awareness for Meniere's Disease.  

How ironic that the awareness ribbon is a mixture of two colors.  Having two contrasting colors that stand out make sense.  I know for me and many others that have Menieres if you are exposed to a vast amount of visual stimuli you can be thrown into an attack.  The fact that there are two colors says to me that no one knows exactly why I have this.  There is a mixture of bad days and really bad days.

Sadly, the ribbon is much prettier than the illness.  Menieres causes sufferers to deal with extreme vertigo issues, hearing loss, balance issues, tinnitus and fatigue.   This is a very disabling condition which causes people to eventually lose their ability to function in normal environments.  So how appropriate to have such brilliant and costly metal colors as the symbol of the illness.

For those that suffer with this illness the following metaphor may be something that rings true for you.  For supporters this is an easy way to explain what happens during the disease process of Menieres.  In the beginning the illness comes into play and there are times that you dance between vertigo episodes and days without vertigo.  Then as the two step continues it gets faster and faster.  The episodes come on much quicker and last much longer.  You are no longer able to distinguish between good moments and bad moments.  Every day is a constant struggle to keep the two worlds separate.  Yet, they eventually meld into one.

How many of you knew before today that gold and silver were the colors for Menieres syndrome.  So here is where patients and supporters can make a difference.  Anytime you can make sure to wear these colors so that you can tell people about your illness and how the illness makes you feel.  Spread enough awareness so that people with the disease are not treated differently and maybe we can figure out just why it happens so people can get better.

I am not sure what others were thinking when this ribbon was chosen but that is what I see.  Been a rough day lots of spinning but I was able to finally get this posted.  In between sleeping and taking medicine.  Night and hope tomorrow you will not have any spins.

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.  

1__Lung Cancer     __2__AIDS   __3__Childhood Cancer    __4__Breast Cancer    ___5_Autism    __6__Brain Cancer 

Hi, I would like to introduce you to my friend Gus

We are approaching Gastroparesis Awareness Month and I would like to introduce you all to my buddy Gus. The below information is taken straight from G-PACT's Facebook page about my buddy Gus: (Please keep in mind that this is my version of Gus and not the official Gus of G-PACT)

GUS Gutbuster© is G-PACT's friendly plunger who is plunging out DTP! Bad plumbing? Call GUS (Generating Understanding and Support). He wants to help fix your plumbing problems! 

The challenge last year was to create your own Gus.  Then take photos of Gus to help spread awareness.  I thought now this is going to be fun and I created my own Gus and started spreading awareness.  Knowing all along that the more people that saw him the more awareness there would be.

Then I decided to take my little guy and go beyond just that one month.  I started taking Gus where ever I went including the store, appointments and he even joined me at work for a few days.  You should have seem people at the grocery store with Gus riding along in the amigo. Gus became a fixture in his seat belt being driven safely from one point to the next.

I am so glad that the organization encouraged participation by the patients.  From the second my little Gus joined my life he has been my Facebook and Google profile photo.  So no matter what you are doing tonight if you know someone that could use a smile please take a second and introduce them to GUS.  It is a good way of thinking how wonderful today could be if I only had an easy cure like this to pump my Guts into gear

Now I want to share something really cool to all of you that happen to meet Gus for the first time, or, run back across him today.  This year I will be entering the little guy in the state fair photo contest.   I am not able to do as much as I was doing back last year and I know I could never take him to places so that people could ask me about him.

Yet, how many people will I actually reach with a simple picture customized and placed in an area where thousands will file by to look at judged photos.  To me that may be one of the most important awareness things I have ever done.  If you happen to be in KY and are at the 2013 state fair pass by the photo contest and see if you can spot Gus he will be happy to put a smile on your face.

See you can spread awareness when you do the best you can on the days you feel good.   Then on the days you aren't feeling so good you can look back and think about how you tried your best.

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 Edge

One of my favorite things is to get photos of God's creation as they are facing their largest challenge.  This is one of my favorite photos because I wonder just what this little guy is thinking.   In my mind he is deciding if he is going to jump.

Haven't we often got to the edge and wondered if we should jump.  I know that this happens to me all the time. Those simple jumps of life. Most people would see them as minor speed bumps but in my eye they are giant mountains.  I have to decide right then and there do I need to take that plunge or just stand there and look over the edge.

Recently,  I have had several of those moments when I had to make very hard decisions.  Knowing if I Jumped I wouldn't be getting the chance to change my mind after making the decision.  But I realized that I had to take several plunges knowing I would not be able to ask for a do over.

Most of my decisions were made by the side effects of my illnesses.  Gastroparesis and Menieres Disease have a way of forcing you to either jump or to just stare at the edge of the cliff.  The sad part is that a lot of time the plunges you are making are into areas that limit what you can do.  Yet, the mountains where you just have to stare off the edge of the cliff are usually overlooking the things you dream of doing.

I know that I wish I never had to limit things I do.  I would rather have the freedom to come and go as I please, without feeling spins.  I wish I could eat anything at anytime, without the nausea.  The saddest part is that I will never be able to do things the same way I did before.

This has brought me to another mountain and one that is the hardest for so many to face.  The fact that you can never do what you did before.  That you will even loose more Independence over time.  That you will get sicker.  That you can not go back and make up for the time you wasted when you felt better.

So I have had to take that plunge over the cliff.  Yet, here is where you can make that plunge either a positive or negative impact.  You may never be able to do the same thing the same way.  There are times you will have to ask others to help you with task that you use to do all the time by yourself.  Yet, anytime you can enjoy just a little of what you could do before soak it up.

Enjoy those moments and don't worry about the next edge.  You have to live in the current moment and if you get to an unexpected cliff don't freak out.  Just take a deep breath and say to yourself no matter what happens I will do my best.  Then if your head spins or the nausea overtakes you.  Know that you can take charge of the decision and even if the disease pushes you over the edge.  When you hit the bottom you can make it a positive result if you decide that is what you want.

If you are reading this blog then you will know how I turned all the negativity that was happening into something positive.  There are days that I can't hold my head up because my spins are rough and I know that I can't type.  There are other days that my stomach is so upset that sitting up just ain't happening.  Any day that I feel well then I will work on the blog.  Even If it takes a while and I have to rest, like today.  See you can make it positive when you fall off the edge if you decide too.

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.  

Awareness is a Patient Thing

Awareness comes in many shapes and sizes.  The best people to spread awareness are individuals that live and breathe a disorder or a certain cause.  You know what makes you tick and you are willing to listen to others and are often the first to share your experience.

I want to take a second and thank someone who helped me by sharing her own life experience.  Anna you know I would have been totally loss without the tricks you have taught me.  Patients who suffer from illnesses are willing to help other patients because they do not want them to suffer.  The longer you are a patient the more tricks you learn.  The best thing you can do is to share that knowledge and that is the first type of awareness.

There are groups that have been formed by patients and supporters to spread the word.  Large groups can make a big impact on finding cures and for proper care.  For those that suffer from Gastroparesis there are quite a few organizations that you can reach out to.  The first group that i was able to find was G-Pact and they have many things that they offer patients.  Yet, they are not the only group.  I suggest that you look around and find which group is in your area or meets your needs.  Connect with them and add to their number it will make a difference.

There are many simple things that you can do to spread awareness to the general public.  These small acts keep the information flowing yet are not very time consuming.  These simple acts are ways of spreading awareness by encouraging others to ask what you are doing.

1. If you have a social media account make sure to place awareness photos on your site. (A lot exist and all you have to do is look around  and ask people are willing to share their photos to further spread awareness)
2. Determine if there are colors for the cause you want to support and make sure to wear them.  Just think back to red ribbons and pink ribbons and what influence they have had.
3. If you have the energy you can start some form of blog.  Try to keep it regularly updated but if something happens and you miss a day or two don't be upset with yourself.  
4. The majority of illnesses have some form of fundraiser that you can be involved with.  Amazingly you can spread a lot of awareness through trying to raise money.  I know for me I have been involved with several different fundraisers.   I am known by my friends for my yearly shaves.  I have participated in St. Baldricks for 5 years raising money for childhood cancer.  
5. If there are walks or other awareness campaigns participate to the best of your ability.  If you can't do it yourself get your supporters involved.  
6. If you can find a t-shirt with your cause on it wear it as often as you can.
7. Lastly, if you participate in any art form there are a few websites where you can post your work and bios of the artist.  rareartists.org is a group that allows individuals with rare chronic illness a venue to post their art.  

Awareness is more about spreading the word and letting people learn about things they would never have known about.  You need to make sure that you get the right word out and share realistic facts.  If you have information that can help other sufferers share.  Sometimes the best information you can share is the name of physicians that are helping you.  Even simple acts of sharing ways that you handle day to day task can be very beneficial.  There are a lot of support groups on the web and in your local area that you can connect with.  You might have information that will help someone.

Well sorry I missed a couple of days.  Took me a few to recover from my test on Monday.  have a good night while I work on resting.

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.  

Patient's can HELP FIND A CURE

When I wrote the title of the blog today I thought I am going to surprise a people.  Just how am I the patient suppose to help find a cure for a disease that I have.  Shouldn't doctor's be finding the cure and helping me.  Isn't this backwards.  I mean I can't imagine how I am suppose to help doctor's find a cure for the disease I have.

What makes it more ironic is that most of us are thinking hey the doctor's didn't even know what I had.  I had to run around and search for someone that had heard of this rare disease what else do I need to do.  

Yet, it is the biggest thing that a person with a chronic disease can do.  We have the power to help others so they do not have to go through this.  Wouldn't you do anything right now to stop your own suffering.  How more honorable to help other people.

So are you ready for how you can help.  If you have read this far I know you are tempted and want to do something to make things better for others.  This is simple and it starts back in that physician's office that you visit to be treated.

Many physician's participate in or know of groups that are performing studies on numerous disorders.  Research studies come in various forms and some allow for you to be in several studies at the same time.  Some do give you different medicine's that they are experimenting with to treat conditions.  Other studies are testing new equipment, herbal remedies, and even different procedures.

I happen to be a member of a study that is simply trying to gain information on gastroparesis.  That way they may discover what caused it and eventually cure the disease.  If nothing else it does give me a sense of giving back.   I have a few physicians that have kept me alive by following guidelines that were established by past research studies.  So it is my way of paying back those that took that chance back then.  

If your physician doesn't know of recent studies there are several websites that list studies.  You can contact the local medical college and see if they are doing any research.  You can watch awareness sites they will often list studies that are taking place.  

Just make sure that you join a legitimate study.  Don't just trust websites make sure that someone that you can trust knows of the study or ask your physician to check it out before joining.

I am exhausted.  Had another one of my study visits plus a physician appointment.  Had a procedure to help gain information.  Have a good night and remember it is up to us to Help Find A Cure.  They need patients like us to see if treatments will work so it is never too late to help.

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.  

Preparing for a Physician's Appointment

Physician appointments can be both exciting and scary.  The big issue comes what is going to happen today.  Is there news that you are truly anxious to hear.  Or is it one of those days where something is shared you would rather not know.

I chose this topic today because it is time for one of those appointments.  There are things that I want to know but there is that anxiety.  When there is a chronic illness involved you just don't know what is going to happen.

Steps to help with the anxiety.

1. Take a book with you even better if you have a tablet.
2. Right down any questions that you want to make sure you don't forget them.  Nothing like wanting to ask something and leaving without asking and having to wait to get the answer later.
3. Take an MP player.
4. Don't go alone, crazy things might happen and you want to make sure someone remembers what is said.
5. If there is something that you don't understand ask the physician to explain further.
6. If a big word is used especially for a diagnosis have the physician write it down.  You know that you are going to be sharing that with supporters and you want to make sure you have the right word.
7. Try to get a good nights sleep.  Being tired will just raise anxiety.
8. Lastly, give up prayers to God (your higher power) it never hurts and sometimes having that comfort is even better than other things you attempt to do.

Now that works if you are going in for a regular exam, if there is such a thing,  Yet, what happens if you have to go in for a procedure.  A lot of the above will help.  Yet, there are a few things you might want to remember.

1. Plan on being there longer than they have told you.  Your over estimate will help you         de-stress.
2. Ask for prayers and support from all of your supporters they will want to be there for you.  This s good for you and for them.
3. Don't expect the results the same day.  Most test takes days or weeks to fully interpret.
4. Make sure the person or people going with you have drinks and something to eat.  It helps if they are just as comfortable as you because they are just as anxious. (We have a care bag we take and it has crossword books, snacks, drinks, gum,mints, tablet, pen and my partners tablet and extra Oxygen canisters).
5. Lastly, be honest with the person giving you the test.  If something unusual is going on that day they need to know.  Sometimes that might effect test results and they can be adjusted.  They might be able to give you something to help you endure the test depending on what it is.

So no matter what do your best to relax.  Don't stress and assume it is going to be an awful experience.  Most importantly if it is one of your bad days to start with let the physician know.  Also make sure to take the things that help you get through the day.  I know my doctors have actually have changed what they were seeing me on days where things were really bad.  I even had a nap one time because my head was spinning so bad they gave me a shot and let me rest until I could walk safely. 

Time for me to post and head to bed.  Very early doctors appointment with procedures.  So I want to follow my own rules and relax before I get there tomorrow.  Have a good one and if you got a second add a little prayer that tomorrow will be easy for me and all others having to make those physician trips.

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.  

Bad Days and how to turn them into Good Days

Rough subject but one that we all have to deal with at one point or another.  There are some days that no matter what you do you will wake up not feeling up to par.  Or even worse, days where you woke up feeling OK but without warning you get ill.

Sadly, for many of us most of our days are like the ones described above.  We do our best to act like nothing is wrong.  We tell others that we are fine.  A lot of times we push ourselves to the very brink of collapse because we do not want anyone to know how we really feel.  We are exhausted and have to deal with pain and illnesses that people will never understand.

Yet, here is where things change we can turn the worse of bad days into a good day.  Now it is not like you can snap your finger and the next moment you feel better.  But, there are things that we can do to make our bad days be good days.

People who are suffering BAD TUMMY DAYS.

1. Don't stress the small stuff.
2. Take a nap.
3. Grab something that is your comfy nourishment.  
4. Heating pads can make good friends on the run a hot water bottle works well.
5. T.V. and a comfy couch or chair.
6. An awesome book or a companion to talk too.
7. Grab a Journal or if on the web a blog or your facebook, twitter account share your feelings. Amazing how getting it down and sharing will help.

People who are suffering with BAD VESTIBULAR DAYS.

1. Don't stress the small stuff.
2. Take a nap.
3. Lay down, if you are out about sit down and rest your head against the wall.
4. Put on a sleep mask to block light.  (If you don't have one trust me get one can be a big lifesaver.)
5. Make sure to use a cane or walker depending on how dizzy because you don't want to fall.  (Suggest having it with you for emergencies even if you don't use it all the time)
6. Try your best to knock out the sound and lights around you.
7. Carry your medicines with you at all times.  Especially if you are going to be out for awhile because missing doses will make things worse.
8. One of my tricks (modified from a great friends trick) is to lay down on a couch.  With my back running along the back of couch and placing my hand on the top side of my head. 

Now, here is the big thing when you do have a good day.  Forgive your body for the bad days because you deserve it.  Today has been one of those crazy bad days when my tummy and head both decided to be bad at the same time.  So it took a lot longer to post.  I did do something that made today a better day than it could have been if I hadn't followed my simple rules.  My nap was nice.  The next one will be better and will be started as soon as I post.  Be good to yourself and remember to stay hopeful and enjoy all of your good days.

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.  

A Patient's Rights

Patients have rights when it comes to medical care.  When it comes to individuals with chronic illnesses there is a fear that if we try to take more control of our care we will loose medical professionals support.

This fear often increases because of our contact with emergency care.  We know our bodies better than anyone else and when we are at a point that we cannot manage at home we attempt to go to get care.  This happens a lot of time when regular physician offices are closed.  It also happens because it often takes years before we learn what is really wrong with us.

Physicians in Emergency rooms are there to stabilize patients and to help in acute situations.  Those episodes that we cannot handle at home are acute and yes stabilization is something that we need.  Yet, here is the problem there are people that are attention seekers and pill seekers that over abundantly use emergency care.  The government has really cracked the whip on physicians when it comes to managing pain.  A lot of the flareups that we as individuals with chronic illness have involve pain.  Therefor physicians due to government regulations and the abusers have started to be leery of treating patients with chronic issues.  Is this right, no. Yet it is reality the best way to get care is to establish a team of physicians that can build a relationship with you.

So now that I have gone over why we fear the way we do and why some physicians act the way they do.  Let's get on the positive side of things.  YOU HAVE RIGHTS.  That is how simple it is.

1. You have the right to choose your physician.
2. You have the right to change physicians if you are not getting proper care.
3. You have the right to seek second opinions.
4. You have the right to get professional care.
5. You have the right to be listened to.

I want you to understand that having rights doesn't mean that physicians are going to be able to cure or treat every ache and pain.  If that was true I know my GI would be curing every case of Gastroparesis that he could.  My ENT would have stopped my spins way before now.

So there is a fine line and you have to walk carefully on it.  There are times that shopping for the right doctor is the only thing you can do.  When you are not getting diagnosed and getting sicker and sicker you need to see if there is a specialist you can find.  Yet, when you have a physician that listens treats you the best they can don't get frustrated and doctor hop because they cannot make you any better.  

There comes a time when you are being treated when you realize that you may physically be at your best. Then comes the next part, what do you do then.  When you have a chronic illness this is something that people have to eventually face.  Yet, here is what I want you to know you must understand that you have to keep hopeful.  The physical part of the illness is something controlled by the body but the feeling is something you can control.  You can allow it to kill you or choose to do all you can within your new limits.  

Know that the limits will change and you will have to get used to new limits as time goes by.   I know that I had a hard time dealing with this.  My favorite line is I am too Young to have this happen.  Isn't that what we all say no matter how old or young we are.  We think of all the things that we hoped to accomplish and have to face that we might not get them all finished before the end of our life.

I want you to know about a second set of rights that you have that are often harder to understand.  If you want to live life to the fullest you need to understand these and choose which ones you want to utilize.

1. You have the right to cry.
2. You have the right to smile.
3. You have the right to be mad.
4. You have the right to laugh.
5. You have the right to rest.
6. You have the right to play.
7. You have the right to be alone
8. You have the right to be with loved ones.
9. You have the right to be sad
10. You have the right to be happy.

Here is the thing you will pick and choose which one or combination of rights you use on a daily basis.  There are some that work better together than others but they are all your rights.  Remember it is the way you use these rights that people remember.  So try your best to use the ones that will help make the best memories for you and your loved ones.  On those days that you have to use the others don't be angry with yourself because it s okay to not always be at your best.  People that support and care for you will understand that you being you is the most important part.

Blog posted and now it is nap time.  Crazy thing about all these rights are that they apply to everyone.  So pick and choose carefully until next time.

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.  

How to Handle Holidays and the Expectations that go along with them

Starters I hope everyone in the United States had a great 4th of July.  I hope your tummy didn't act out and your head didn't spin.  Yet, if you are like me you had both of these happen but still made the best of it.

Amazingly illnesses don't know that there is such a thing called a holiday.  This is like so many employers who left their doors open and employees had to show up to work.  It is something that you have to get use to.  There are somethings that just have to happen even when you would rather they would take a day off.

Yet, there is a way to handle holidays and enjoy them. I use to hate them especially the ones that involved eating.  Oh wait they all involve some form of eating.  Isn't it amazing how we as Americans have decided to connect food with all forms of celebrations.  

This not only involves joyous celebrations but also times of remembrance. 

• Memorial day a time to remember those that have sacrificed their life fighting for the United states. Yet, better known as the day the pool opens for the summer and first BBQ of the year.
• 4th of July the day we celebrate the Independence of the United States.  The second holiday of the   Summer season with fireworks and again another outdoor feast.
• Labor day a time to remember what all workers have done for the economy and the United States.  Better known as the last three day holiday of summer, pools close and make sure you get that last BBQ of the year in.
• Halloween is connected with a time to remembering our loved one that have passed.  Yet, it is a time to dress of have a party and collect as much treats, candy and other food goodies one can handle.
• Thanksgiving a time to give praise to God (higher power) for all of the gifts that have been given.  We all know this day as the day of football games, Macy Day's Thanksgiving Parade, and the biggest feast one can imagine.

So it is easy to see how if your illness involves the ability to eat how upsetting these days can be.  Someone with a Gastroparesis knows that sometime throughout that day the food is coming.  For many that angst is what keeps them from enjoying the day.  You want to be around people and party with the best.  

So how to handle it and still enjoy it without focusing, dreading, the food.

1. Enjoy being with Friends and Family.
2. Concentrate on all of the things that go with the Holiday that don't involve food.  In reality the reason behind the day.
3. Allow yourself to spend time resting if that is what you need to do.  If it is a bad day don't fret you can do your celebrating when you are having a good day.
4. Be honest with those that you are with about how making food the center of the event is difficult on you.  Chances are they have never thought about that and will see things differently.
5. Start a new tradition that moves food further down the line in your celebration.
6. Lastly, don't be upset when it comes time for the food because your love ones deserve that part of the tradition.  Being stuck on the fact that they are eating and you are not will just cause you to form resentment against the ones that you love.

Hopefully, you have friends and family members that understand as much as mine.  Yes, we eat but that isn't the highlight it is being together and making lasting memories.  Yes, there is a time of nourishment but that is something that needs to be done.  On those holidays that are bad that let me rest and we make up for it at a later day.

Five blogs and so much more to share in the future.  To those of you that helped me make memories today that we will never forget thanks.  

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.  

Bad Days vs. Good Days

I have mentioned since the first post that there are BAD DAYS and GOOD DAYS.  A lot of people question how is that possible.  If you have an illness how can you have different types of days.  Shouldn't you feel the same every day, which is miserable like your bad days.

For starters let's point out if you do not have a chronic illness you too will go through both good and bad days.  So I will start by explaining what that means for these individuals then I will explain what it means for us with chronic illnesses.

Good Days for people with no chronic illness.

• No pain when you wake up in the morning.
• Eating throughout the day with only problem eating more than you need to.
• Able to do housework without pain or having to rest  in between tasks because you are fatigued.
• Able to go to work with no fear of having to leave because you get sick without any notice.

Bad Days for people with no chronic illness.

• Waking up with a headache or a back strain.
• Calling in sick because you got a bug.
• Cancelling a dinner date because you just aren't up to par.

Now  I know I am simplifying this but there is a big difference with people who have chronic illnesses. Our Good Days are not as good as the Bad Days described above.  

Good Days for people with chronic illness.

• Able to control their never ending pain with medication.  Maybe not all day but for a few hours.
• The spins lifting for a few minutes throughout the day because of the medicine and sleep.
• Being able to eat a few bites of food because of medicines and stimulator helping with nausea.
• Spending a few minutes talking to a friend or watching TV.

Bad Days for people with chronic illness.

• Bed bound for the day
• Headache that will not go away no matter what you do.
• Stomach so sick that even fluid makes you nauseous.
• Falling or hitting walls because you can't stop the spinning.

People like me spend most of our days in the Bad category.  Everything might not be hitting us at the same time.  Yet, there are things that are causing us to limit what we can do.  Yet, we push ourselves to do something even if it isn't only smiling.

When the random good days come along.  Doesn't mean all of the symptoms are gone.  This just means for a little while they seem to be under a control.  Still not as well as you were the day before because ironically a chronic illness means that you will get sicker and sicker as you go along.  Yet, you feel like you can do something for a little bit and want to live life to the fullest.

So the difference between BAD DAYS and GOOD DAYS for those that are sick is easy to understand.  The GOOD DAYS are the little treasures given to us by God (your higher power) so that you can leave lasting memories with those you cherish and that cherish you.  The BAD DAYS are just the normal days that occur because the cards you have been dealt.

Tips on enjoying the GOOD DAYS:

1. Allow yourself to enjoy them.
2. Spend time with the ones that you love.
3. Try to do the thing you love the most to the best of your ability.
4. Snap a few photos to help you during the really BAD DAYS.
5. Most importantly SMILE.

If you are sick you already know what to do during the bad days but if you don't here is what you need to do.  

1. Relax
2. Rest
3. Seek support from the ones that you love.
4. Remember all of the Good days take out your photos and smile because you have those memories forever.
5. Lastly, if you take care of yourself during the bad days you will have more good days.

Four days down.  Takes a lot a few naps while doing it but it is worth it.  My only hope is to help someone.  If my blog has helped you any at all just let me know.  Who knows it might make one of my Bad Days turn into a Good Day.

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.  

Invisible Illness and Emotional Effects

In my first blog I mentioned that Gastroparesis and Menieres are an invisible illness.  I want to first explain what an invisible illness is so as not to confuse those new with the definition.  A invisible illness is an illness that people can't physically see.

I guess it is easier to explain visible illnesses because we all understand those and are willing to take them at face value without question

• A person in a wheelchair rolling along the street.
• A deaf person using sign language to talk to others.
• A blind person walking with a Walking Stick or cane.
• A cancer patient that has lost their hair due to chemo therapy.

We never question if these people's illness is in their mind.  We can see that they are sick and we immediately do one of two things

1. Try to help them even if they don't ask. 
2. Ignore them when they look like they need help. (We don't want to interfere with their independence)

Now let's look deeper at invisible illnesses these are illnesses that people have to take the sick person's word on.

• A person suffering vertigo is spinning in their head.  You have to trust that they are sick because how can you tell someone is spinning.
• A person suffering with fullness after eating one or two bites of food.  First thought that goes through a person's mind is are they trying to loose weight or not gain weight.
• A person that gets sick after eating or drinking.  Are they afraid that they will gain weight.
• A person that has some good days.  Is it depression that is effecting them on what they call their bad days.

See it is easy to see the difference visible illnesses are those that people can connect with an outside physical sign of sickness.  Invisible illnesses can be dismissed because the same signs can be connected with depression or attention getting.

Yet, if you know someone with one of the Invisible illnesses and you truly support them you know the difference.  You know it is not in their head.  You can tell grabbing the wall to keep their balance is realistic.  That not wanting to bend over is truly something that they cant do.

People with invisible chronic illnesses endure something that others don't.  When you have an illness people can see or hear about they don't question how you are doing things.  If you cant do something they immediately accept it.

Those of us with the misunderstood chronic illnesses deal with people doubting how you feel and if you are really sick.  This goes way beyond the general public.  Physicians are so unaware of certain rare illnesses that they don't believe you when you tell them the symptoms.  Insurance companies deny you because they cant accept the fact that you are really ill.

You also become an experimental tool for the medical community. You want so bad to be better to get over how you feel that you will do things most people would never even think of doing.  It is a very shocking experience to go to an emergency room and you have to explain what is wrong and  how the medical staff can help you.

 I will never forget having to go to the ER because I thought my surgical site was infected and it was over the weekend.  The surgeon told me where to go and for them to look at it to make sure that it is not infected.  The physician took one look at the back of my ear and left.  Turns out he had never heard of an Endolymphatic Shunt.  So he wasn't sure what it should look like if it was infected.

I will tell you the fun latter of having a gastric pacemaker and how often I have to explain that.  But this is the stuff that we people will illnesses will do to get better.  Just like a cancer patient or someone that has been burnt we want to get better and Will do what the physician's say.  Sometimes we find out they never heard of what is wrong so they are experimenting on what will make us better.  Then there are times that you are lucky enough to find specialists that understand the illness and they do what they can to make you better because they know what is wrong in the first place.

So to the Emotional Effects are devastating not only to the person that is sick but those that love them. Patients feel like no one believes them.  Their love ones have to watch them endure explaining over and over again about their illness.  Both the patents and their loves one have to endure physicians treating the illness without understanding it.

Here are a few things that can help stop this kind of negativity.

1. Remember that patients don't want have to explain things over and over again.  Look up the illness on the web and enlighten yourself.
2. Patients will have good days but a good day for someone who is sick is not the same as a good day for someone who isn't sick.
3. Patients don't want to be sick.  Who would want to endure with an illness that they will never get over.  
4. Patients would rather not have the attention that comes with being chronically sick.  I know for me I would rather get attention for things that are awesome in my life not about my upcoming procedure or test.
5. Families and friends are not enabling the disease.  Hopefully they are helping to support and highlighting the good things that are going on.
6. Supporters would rather be having fun all the time than having to worry that when they go somewhere how to get the extra equipment to their destination.  Is something bad going to happen and we will have another hospital visit.

Three blogs down.  Now here is the crazy thing it takes me almost all day to do one of these in between dizzy spells and tummy aches.  So hope it is helping explain things from the way I see it.

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.