My one only Resolution for the new year...I hope you will Join me

The New Year always brings about the resolutions that people keep for a few days and then forget all about them until the next New Year.  We have heard them all:

• I am quitting smoking
• I am going on a diet
• I am going to exercise
• I am giving up sweets
• I am going to be a better driver
• The list goes on and on

Yet, what happens to someone that suffers from silent illnesses.  Many already have lost so much that there isn't that much to give up.  If you are on feeding tubes how are you going to go on a diet.  Since you are on a permanent one.  If your physician has taken away your ability to drive how can you become a better driver.  If your body is in tons of pain how are you gong to exercise more.  

No wonder we get frustrated.  We here all kinds of people wanting to stop things that we wish we could do.  I know there has been a time or two in frustration that I have said why don't you live like me for a month.  Then you will appreciate what you can do.  

This year I am making a new resolution.  One that I hope those out there fighting can join me in.  I am going to quit being mad at my body.  Now there is a hard one to swallow.  If you are sick and tired don't you want to yell at your own body for putting you in this shape.  I know that many of us have asked that golden question WHY ME.

I will tell you that if you have a silent illness.  One that has taken things away that you wish you could do.  It has proven how strong a person you are.  My friends a family look up to me because they can't imagine living with these illnesses and still wanting to fight.  I am stronger because my body is weaker.

So how many will join me.  Time to quit yelling and despising our bodies because we are sick.  It is time to love ourselves for what we can do and not be mad about what we cant do.  We all would rather be able to do what we use to do.  Yet, looking at what you can do will change your perspective on life. Letting go of the anger is a big part of starting to fight.  Stop worrying about the things you use to do and start concentrating on what you can do.  

Then next year when someone asked if you lived your resolution you can proudly say yes.  Then tell them you are going to do the same one this year.  Be a role model for yourself.  Do what you can do and let the things you use to do slip out of your mind.

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. 

Reclaiming the Holiday Season

For many of us we are days away from one of the most important holidays of our year.  A time when we celebrate family, friends, and for many the birth of Jesus.  Yet, for us that have been sick for along time we do not find joy in the Christmas season.  We begin thinking of all the things we use to be able to do and what has been stripped by our illness.

We can reclaim Christmas, Kwanzaa, Hanukkah and many other Holidays.  we can do this in a few easy steps.  Remember reclaiming these important days will benefit your life.  It will let you go back to a sense of normalcy.  The fact is that when you give yourself the opportunity to enjoy something that you use to you will fill much better.

1. Let your friends and family know that it isn't a day that is important rather the reason for the celebration.  By doing this you can pick and choose when to celebrate the day when  you are feeling well.
2. On the big day don't over do it.  When you are tired rest.  When you feel good join everyone.  Remind your friends and family that you will enjoy and be able to participate more if you can do it based on your strength.
3. Let others in the group do the big planning.  This can make you just as tired as actually being there for the holiday.  Rest up for the big day so you can still enjoy.
4. Lastly, if the big day comes and you do not feel good don't be upset.  Do what you can and you will find that you still have saved the 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. 

One of the Many Reasons we Can't STOP Fighting

We are once again reminded why we have to keep fighting.  When a 16 year old has to undergo suffering and then passes away we have no choice but to fight.  I do not want any of us to have to face that end.  Yet, we have to fight harder to ensure people listen that can make a difference.  We have to stay united because we can reach those that can grant money and help find a cure.

I know for me I tell as many people as I can about what makes me sick.  They need to know that they often see me at my best.  Which is not the same as last year, or yesterday.  Yet, the more people that we share what the illnesses do to our bodies the more support we will have.

I know that we all face hard days.  Days where the pain, nausea, dizziness and everything else is making it impossible for us to keep going forward.  Yet, we have to be grateful that we are alive.  We must remember that is a gift that we are given.  A hope that today is the day that they find a cure.  The hope that today no one else has to suffer.  The hope that today is the last day that anyone has to pass away because of physicians lack of knowledge.

As you read this I want you to know that you are one of my reasons that I cant stop fighting.  I pray for each of those that are effected by these silent illnesses each day.  I pray for the families that have to watch their family members suffer.  Let us remember to stay united so that we can one day we can say we have conquered these illnesses. So know one will have to suffer in silence and we have found the cure that we all need to live life to its fullest

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. 

Changing i can't to I CAN

It is easy when you do not feel well to think about all the things that i can't do anymore.  I could spend my entire day concentrating on the negative side of life.  I could concentrate on all the things that I did before.  I could stress over the things I wished I could do.  Yet, who does that help.  It sure doesn't help me make it through the day.  It also runs away people that might like to be around me.  So today practice turning i can't into I CAN.

I CAN think.  I have the ability to think through the fog and do some of the things that I love.  I CAN imagine and read books.  I have the mind to be set free from my negativity.  I CAN have the brain and willpower to make it through this day.

I CAN live.  I was blessed with waking up this morning.  Doesn't mean it is a perfect day, but I CAN breathe.  I CAN go into today with a positive outlook.  Those are the things that I CAN choose today to help me make it one more day.

I CAN dream.  This is one of those things that no one can take away from me.  It doesn't matter if I am awake or asleep I CAN dream of the day when cures are found.  I CAN dream of days when peace conquers all.  I CAN dream of a day when there is no sickness or war.  This is something that I have been given because I choose not to allow the part of me that wants to dwell on the sad side of things to win.

I CAN motivate and inspire people.  There isn't a day that someone doesn't tell me that they look up to me for what I am doing.  They know how bad I feel, yet they see that I just will not throw in the towel.  No matter what I CAN be the person that shows that you do not have to crawl in a hole when you are sick and give up.

Lastly, I CAN be a great Fighter.  I Can bring awareness to illnesses that most people don't know about.  I CAN use every last bit of my energy and strength to ensure that everyone understands how wonderful they are.  I CAN teach by example if today only one person learns how to start fighting instead of giving up.  I HAVE WON.

Yes, it is hard sometimes to think this way.  i can't is very easy to fall into because there are so many things that change when you get sick.  Yet, I CAN is also easy to fall into when you give it your all.  My best doesn't mean that it is better than others.  Yet, I know I gave it what I could give it that day.  Tomorrow might not be as good, yet I CAN hope that it will be better.  As long as you look for the silver lining you will be blessed.

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 the Day of Dread..or..what most people call Thanksgiving Day

It is time to tackle the one holiday that is most dreaded for those who have chronic illnesses Thanksgiving Day.  The day when you get together we all those people in your life that really don't understand what your going through.  There are those that just wished you would try a little harder. Then those that think you are faking it.  Then there are those others that think you have brought it on yourself so you need to learn to live with it.  The last group is the most important those that understand and support you.

Thanksgiving is about sharing love and being thankful for what you have no matter what cards life has dealt you.  There are some simple steps to take before the big day to ensure you can make it through it.

1. Pack what you can eat or drink to take with you.
2. Take someone that supports you to the event.
3. Let the Host or Hostess know that you will be bringing your own nutrients and it has nothing to do with what they are cooking.
4. Suggest that everyone say thanks for something that they are thankful for.  When it comes your turn say thanks for just being with your friends and family.
5. Don't get mad at yourself if you cant have something that others are having.  
6. Set a time that you will plan on leaving so that you don't get too tired.
7. Most importantly if you wake up on the big day and feel like you just cant do it call and admit you are having a bad day.  Yet, you will get with them another day when you are feeling better.

See what it takes is getting your mind wrapped around the fact that it isn't your fault that you are sick.  Your body did this on its own and you cant miraculous feel better on a magical day.  Enjoy everyday of life that you feel good.  On the ones that you feel bad let your body rest.  

Those that don't understand well don't worry about them.  These are the people that don't matter in the big scheme of things.  The people that understand you are the ones that you should spend your energy on.  If people cannot understand what is going on you have to understand that a lot of that has to do with their own fear.  If they have seen you slowly go downhill then they may see themselves in your reflection.  Their aches and pains may make them wonder if they will end up like you.

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. 

Ever Feel Like Giving Up?

If the answer to the question above is no then woohoo.  Yet, I would bet that most of you know that feeling quite well.  I know that there are times in my life that I have gone through several weeks at a time going I don't want to fight anymore.  Then all of a sudden the giant flare subsides and I think okay maybe I can get through this.  That is until the next flare hits and I am ready to toss in the towel.

Most people with one chronic illness also have the blessing of having more than one effecting you and knocking you down in a different direction.  I am blessed with several the two with the most impact today are the Menieres and the Gastroparesis.  That doesn't mean that the other 5 don't flare up and put me through their own struggles.  Yet, Menieres and Gastroparesis have away of playing against each other in such a way that I fight one or both daily.  Okay honestly hourly would be more like the fighting schedule but who is counting.  

Here is what I have learned giving up is not an option.  I can't throw in the towel because of what it would do for those around me that support me each day.  Believe it or not you are someones hero. I never thought of myself as anything more than someone that was sick.  Someone that was dealt the short stick.  I have been mad and a times wanted to just get it over with.  Then all of a sudden out of the blue someone will walk up to me and tell me that I am their inspiration.  the first time that I happened I thought you got to be kidding.  You better go pick someone else because this beat up body and worth someone being inspired by it.

The I came to realize that people that saw me each day knew what I was going through.  They saw me fighting with all I could to keep having as much a normal life as I could.  I have days that getting out of bed is my biggest accomplishment.  Yet, I did it.  Other days watching TV and talking to my friends occurs.  then other days I go outside and visit with people especially my supporters.

The amount of my supporters has grown over time.  See supporters are there because they know you are fighting.  If you have thrown in the towel then you aren't around those that would be there to help you through the day.  People that support individuals with chronic illnesses do it because they love you.  They see your fighting and are amazed that you give it your all.  Even when it is small things that happen they are there in your corner celebrating.

I have a phrase line that I use and those that know me can look in my eyes and tell if I am honest or faking it.  If asked how I am doing I always say fine.  Even when I cant put a sip of water on my nauseous tummy.  Even when standing is a victory in itself.  For those casual observers that want to know that I am fine they accept this little statement and keep going on with their life.  Yet, those that really know me look at me and usually say good try what is going on.  Even better some will say world spinning or let's not worry about eating today.  They have come to love me and through my eyes they can tell what is going on.  

So Giving up is not an option for me.  I do have days when throwing in the towel sounds like the best option in the world.  Then I stop and go I have had worse days then this.  I made it through that battle last week.  I was able to do something yesterday that I am shocked that I pulled off.  Heck what will people think if the Deacon says enough is enough.  I have learned that having faith gets me by when nothing else works.  See deep down inside I know that one day they will figure this out and no one will ever have to have these illnesses.  Maybe not in my lifetime.  Yet, I am willing to be a guinea pig so that others can get through it better than I have.  

So the next time you say today is the day I am giving up.  Stop, think about it a moment and remember the days that you did get through it.  Think about those that would mourn your loss if you through in the towel of defeat.  Most importantly take care of yourself and get through that day so tomorrow you can look back and say I did it.  The only way to survive being sick is trying your best to be positive.  Find something that you can grab hold of that will keep you sane and don't let it go.  As long as you have that one thing then you will know that fighting is worth the fight.

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. 

Small things Make a BIG difference when you Struggle Everyday

A quick picker upper.  There are multiple little tasks that you accomplish each day.  Those little accomplishments need to be what you focus on.  True it would be great if you could do the big things again.  Yet, when you are able to accomplish the smallest of tasks your heart can soar.

True Story and it concerns this blog.  I have been watching for a few weeks because I was getting close to a magic number.  One that would mean that I had done some good.  I started this thinking I might get a hit every once in a while.  It basically was my way of dealing with the struggles that I was going through.  I was shocked when in no time flat I had a hundred hits.  I thought there must be a few people that read this and hopefully they are getting the calmness that I am getting from writing it.

Just yesterday I hit another one of those milestones I went over a 1000 hits to the blog.  I can tell you right now that to me that made a great impact on me.  See I have days when all I want to do is lay in bed all day.  There are other days that I get so mad that I want to fight the whole world. Yet, knowing that someone might think things a little different the next time they are having one of those days keeps me going.

How about you?   I know if you are reading this your trying to find a positive spin on life.  I try my best to stay up beat because it is the only way to keep me in check.  See some days just getting out of bed is a major accomplishment and for that I say yeehaw.  Other days being able to write down my thoughts is a major accomplishment and for that I am grateful.  Other days going ten minutes without the world spinning means that I can enjoy something special.  Other days it is eating without getting extremely nauseous and for that I thank my body for being nice.

You don't have to climb Mount Everest.  You don't have to run a marathon.  All you need to do is find those little things that make a big difference in your life.  Yesterday it was getting a thousand hits.  Today it was getting to hold my little man Adam, pictured above.  He knows when I am in the middle of a great spin so he jumps on my lap and helps me through it so that I can continue on with life.  See we all have something special in our life.

When you start adding up all the small things that make you feel better today you can realize that you have done something big.  If that means waking up and making it to your front room. Snuggling with your precious children, for me the four legged kind.  If you are reading this you can add that to your I did something today for me list.  I encourage everyone to start looking around them and see just how many small things you get done in one day.

I would love for those that do it to share with the others that read.  Write a comment about how many things that you did in one day no matter how small that were major accomplishments.  I have got four so far today.

1. woke up
2. got out of bed
3. snuggled with Adam
4. wrote this blog

Not bad for a start of the day.  All of these small things will eventually add up to a day full of accomplishments.  Don't be surprised if your list is longer than you ever thought it would be.

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. 

Being Support for those that Support you

Hopefully, you are lucky like me and you have people that support you through the rough times.  Chronic illnesses not only effect you but everyone that loves and cares about you.  Just as your feel hopeless they too feel the same way.  when you are having a bad day they too are having one because they do not know how to help.  When you are stressed they see feel your anxiety it bleeds over to them and their level of stress rises.

Supporters need someone that they can talk to that isn't you.  That is the first and most important thing that you can do to help the people that are there for you. Do not try to be their everything they need others in their life just like you need them in your life.  Don't get mad if they want to spend time with a friend or family member while you are at home.  It does both of you good.  It allows you some independence and it gives them a chance to walk away from the situation and regroup.

Do not get mad if your supporter can do more things than you can.  We all go through struggles of getting mad because of loss of certain independence.  Yet, you cannot be mad if they can do things that you use to be able to do.  That is the beauty of having a supporter in the first place.  They will know when they can help you and when to let you do it yourself.  When you get mad because they can do something that you use to your are putting undo stress on them.  Be glad that they can help you when you need it.

Don't over burden your supporter.  Hard medicine to swallow isn't it.  If you think that they should be at your beck and call you will soon be disappointed.  They have a life also.  If there is something that you cannot do wait until they are free to ask for the support.  Wise woman told me once that I can only get help if I allow others the chance to do it.  Sum it up if you demand it then it isn't help it becomes work for the supporter and that is a heavy burden for them to bear.

Encourage them to do activities that they enjoy even if you cant do it with them.  See supporters need to know that it is okay for them to do the things that they love.  Don't make them feel guilty if they can run that race you use to do.  Climb the mountains that you use to.  Simply go to the store and carry the bags to the car without a cart.  See how easy it is to let them enjoy their own activities it lets them keep a sense of who they are.  Then when you need help it isn't a dread instead it is a pleasure because they are living as normal life as they can.

Be honest and don't push yourself to do things that will hurt you in the end.  Supporters need to know up front if you aren't going to be able to do something that you thought you would be able to do.  Don't make them feel like they pushed you into a situation you cannot handle.  It isn't fair to them.  Instead if you know that they want to do something that you cant do then just be up front and honest and say so.  But at the same time tell them to go ahead and do it.  Encourage them.  I have seen several people that do marathons because they are doing it for a love one that wished they could.  Just think how they feel especially if they are encouraged to do those things and with you on their mind you are getting to do it also.

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 Chronic Illness Statements

This is a hard topic to discuss because all of us at one time or another has bad days.  Yet, when you suffer from chronic illnesses there are many times that your good days are the general populations bad days.  Yet, people do not understand why you act the way you do.  are the statements that drive me and so many others insane and how to fight back.

1. You Don't look sick....my response is Thank God.  If I looked as bad as I felt I would need to go turn myself into the coroner.  Changes people's attitude immediately.
2. You look like your doing good today...my response Great...I must look like death warmed over the rest of the time.
3. The rhetorical How are you feeling statement...response...you really want to know or do you want my old stand by...I am fine
4. What you mean you cant drive...response...well I can if you don't mind if you are the car in front of me when my hid starts spinning.
5. You are way too young to be that sick...response...great now your saying my body is old...cause I really do feel this sick.
6. I made this just for you why aren't you eating...response...well I decided I wouldn't get sick at your house today...but if you would refer that give me a big ol bowl of it.
7. There has to be a cure...response...yeah there was a cure but I decided to stay sick for the sympathy..
8. You had to do something to get sick...response...you are right....I got it because I judged someone that didn't look sick.
9. I saw you yesterday and you looked so good. what did you do to make yourself so sick today....response...stuck my head in a blender thought i should let it spin so i could get sick.
10. Last but not least...my all time favorite...I hope I don't ever get that sick...response...come on join the fun...I mean I really could use a sick buddy...want you do it for me?

See most people don't realize the statements are so hurting.  They only feel the pain when they themselves are faced with illness.   So getting mad doesn't help them understand what they are doing.  Turning it into a comedy routine helps boast your morale.  It also helps them see how insane their statement really is...don't forget people are not trying to be mean.  Our society just has a hard time dealing with illness.  We expect the medical field to cure all our ills.  So when we don't immediately get well then the thought is you must not be trying hard enough.

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. 

Accepting your illness

The first step of getting better is accepting your illness.  It doesn't mean you cant be mad about being sick.  It doesn't mean you have to be happy about being sick.  It simply means that you accept what you have been given.

Instead of fighting your body you have to learn to live with it.  Yes, you will have limits but that doesn't mean your life is over.  In fact, you might find that your limits in one area increases what you do in another area.  I can tell you from my own experience it is hard to accept that you can't do what you use to do.  Yet, now I have more time to spread awareness and help find a cure.

I have days where I get mad because I cant do something that I did before.  My hardest thing is being dependent on people for a lot of tasks that I use to do myself.  The fact I cant leave my house unless someone drives me actually drives me insane.  Yet, I have realized that I can leave my situation by watching TV or reading.  I am catapulted away to somewhere different than where I am actually at.  My escape is now all mentally produced but it does help a little bit with the driving issue.

There are days I get mad because I see someone eating something that I am craving.  Knowing deep down if I even took one bite I would pay for days.  So I have learned to enjoy what I do get to eat. When someone is eating something I am craving i just imagine what I am eating is the same thing.  Amazing how you can let your mind wonder and create your own space.

So yes accepting your illness is very hard.  You have to learn that it isn't your fault.  You didn't do this to yourself.  Most chronic illnesses are caused by something you cannot control.  The two that bother me most are both idiopathic.  No one knows what caused it and all I have to do is to learn to accept it.  When I fight it I come to realize that it is harder for me to deal with and a lot of times I get sicker because I am worrying about it.  So I have decided just to live within the limits and know that one day they might figure it all out until then I will keep on keeping on.

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 six dreaded Letters of Chronic Illness

So what are the six letters dreaded letters of Chronic illness S T R E S S.  That is right the worse thing that can happen when you are sick is to have stress in your life.  Yet, how do you avoid stress when you are feeling sick.  Furthermore how does anyone avoid stress in their life.  Are we not constantly surrounded with people, events and circumstances that STRESS us out.  The body does not like stress and if you add in a chronic illness you are setting yourself up for a major flare up.

It is vital that you learn to release stress in a positive way.  Holding on to it will only make you sicker.  I know you are thinking easier said than done.  I know just how you feel there are times that the only way that I know how to deal with stress is to scream.  I call it my fight back mode.  Yet, there are several things that you can do to fight stress in a positive way.

1. Don't do it alone.  Hiding yourself from people when you are stressed out keeps you from sharing the load with someone that may be able to help you.
2. Don't dwell on the negative things in Life.  We all have things that are going good in our life. When things are stressing you out think about the things that put a smile on your face.
3. Don't be mad at your body.  Being mad at your body will only make it sicker.  Instead rejoice in the things that you can do.
4. Pick up a hobby.  Everyone of us has something we like.  Maybe it is playing a game on the computer.  Maybe you can write letters or even start a blog.  Find something that you can use as a distraction.
5. Don't give up.  This is the most important one that I have found useful in my battle of stress. I want to be the victor.  To do that I cannot give up I have to fight harder today than I did yesterday.  Yet, fighting gives me control and sometimes that is the best way to deal with stress.

So if you are stressed out today don't feel alone.  We all go through different stresses throughout the day.  Yet, we can make it because we are strong.  The power to be the victor is within us we can conquer stress if we just fight the hard fight.  Be sake and always remember that tomorrow is just a few hours away.

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. 

What can I eat

This subject is what scares everyone that has Gastroparesis.  If you have Menieres you know that your diet it just as tricky.  Most people with one chronic illness also have another illness that complicates the issue of what to eat.  You might not be able to eat gluten, yet are not suppose to have starch, oh wait no fiber and don't think about adding salt.  So the question comes what can I eat?

This has bothered me for sometime and I have being learning to live with my pacer.  See life changes when you aren't as nauseous as before.  You become a little risk taker and then you find out that somethings are off the list for good.  The best thing that I have learned through this whole process is that no two of us are alike.  What I can tolerate would send others down a deep spiral.  What others eat I can't even handle the taste with out the nausea starting.

Some people swear by juicing others by puree.  Some say baby food others try soft solids.  The goal is finding out what you can do that makes you get through the day.  Remember what you eat today may not be something you can eat tomorrow.  Don't beat yourself up if you try something and it doesn't work.  We learn over time to become one with the body.  Once you quit fighting and eat what your body can handle then you will start to get better.

Now I laugh and say that since my pacer I have started to lose weight.  Which for me is a great thing.  I am actually eating healthier and my body is getting the proper nutrients.  I still have trouble with the fiber components but that is okay they just take to long to break down.  I can enjoy food now because I have learned that food isn't my enemy.  My body isn't my enemy they are a tag team that need to work together.  If you eat the right food and the correct amount you will win the battle.

Now what about those that can't eat anything.  Once you get to that point the doctors help with parental feedings or use an NG tube.  If you are at this point don't get mad.  The frustration can set in quick because most of the things we do in life revolve around food.  So here is what I suggest be the owner of your new life.  don't get mad get even.  What I am saying is take control don't give up.  Be happy that you have a way of still moving on with life.  

I learned a valuable lesson and that is people will look at us that suffer and be amazed with what we do.  There are people in your life that think you are wonderful.  They know how you feel and they put you on a pedestal when you accomplish milestones.  My friends are my biggest supporters and when they see me do things they are excited.  

So keep a diary of what you can eat so that you know what works and what doesn't.  Also keep a diary of what all you accomplished that day.  You will soon learn that the one diary is more important than the other.  For me what I got done today is better than what I can eat.  Now I concentrate on it and my life is much happier.  Guess what I can add posting this today to my list of accomplishes.  What have you done that makes you smile 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. 

Twiddler's Syndrome

Have you ever had a pacer or other surgery.  No matter what you do you can't keep from touching it.  I know that this is something that has happened ever since my Enterra device was inserted n February.  It seems to hurt all the time.  At the site of the pacer.

So I have a tendency to rub or pat it.  Then I found out that there is this crazy thing called twiddler's syndrome.  Amazingly this is when someone has a surgery or pacer and they twiddle with it.  Let's just say I have become a twiddler.  I have no control over it.  It is like my side draws me to it and it has to be rubbed.

The problem is that the twiddling or fidgeting of the pacer can lead to serious complications.  People have actually had pacers moved because they mess with the pacer.  In fact, it is one of the warnings in the manual.

So for right now I haven't figured out how to stop twiddling with the pacer.   I have a feeling that knowing about the condition has helped a little.  But it is hard to break a habit that you have started.  It is like a bad habit you just can't stop.

So if you discover that you have started this.  Then consider trying to break your habit. If you can stop it before you start the better off you are.  So here is my first suggestion whenever you go to touch it think f I do this I might have to undergo surgery again.  Because you can dislocate the pacer to the leads.  

Secondly, always remember that the more you touch it the more you will continue to do it.  Encourage your supporters to point it out to you if you are twiddling.  The more people to help you stop the better.

So my update I am consciously not doing now since I know about it.  Every time my hand goes to the side I take a deep breath and remember to stop.  Then lastly, my friends and supporters see me and they say hey you is twiddling.  I feel so guilty that I stop and then do not go back to it again.  

Well,  there you have it something you probably never heard about.  But, if you are like me you been doing it for awhile without even realizing it.  So enlist friends do the research and see if you can stop it before you unintentionally dislodge your pacer.

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. 

Riding the Water Wave

This must be what is happening in my Ear

Who needs a water ride when you have one in your ear everyday.  Well as you can tell there has been a delay in post this week.  I love the fact that you never know when you will hit the rapids and start a spin that knocks you off the raft for a few days.  This week has been one long ride down the rapids.

Today I wanted to go into more detail about Meniere's Disease.  This illness was diagnosed in the 1800's.  Just think about it physicians have known this disease for 150 years and there is no cure.  In reality there is only guesses what causes the balance issue.  Even more upsetting is that no one knows why this happens to people.

Before any illness can be cured people have to know what causes the system to go bad.  Yet, this disease seems to be one of those that physicians still use old medical treatments to cure.  Now I say this because if you look at medicine over time you will see that the final solution is to remove what is suspected to cause the illness.  The last step to curing the disease is a vestibular neurectomy, or in layman's term removing the balance portion of the ear.

Like many illnesses there are varying degrees of Meniere's disease.  Mine personally has gotten to the point that I have lost my balance at all times.  I also have daily attacks of vertigo.  The most frightening are those which are known as drop attacks.  In this type of attack the person affected needs to lay down immediately for the vertigo to come to a stand still.

Two days ago I had one of my worse drop attacks that I ever had.  It took two people to get me from my front room to my bedroom.  My whole mind was spinning.  Then when I laid down I felt as if I was falling off the bed.

When I explained this to a friend they said that must be like the times when a person gets so drunk that they lay on the bed with one foot on the floor.  I responded with yes, but imagine that times 100 and not only is your head spinning but you balance is gone.  You body doesn't feel like your own.  In all reality all you can do is pray that the world stops so that you can get back into your own body.  Because with drop attacks you do not feel yourself.

So there you go hope you are not riding any rapids today.  I still feel off because of this last one. Short and sweet if you have one of these attacks lay down.  Take your medicine you can also place an ear plug in the effected ear.  I find it amazing that the ear plug helps drown the tinnitus.

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. 

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.