DISABLED DOESN'T MEAN I AM DEAD

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Takeaways:

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

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

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

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

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

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

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

Stop and Smell the Roses

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

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

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

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

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

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

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

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

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

Simple Lessons to Learn if you have a Silent Illness

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Digestive Tract Paralysis Awareness Month

Digestive Tract Paralysis is something that is hard to explain.  The definition seems easy your digestive system doesn't work because it is paralyzed.  Now people have different things that come to their mind when they thing of this term.  People are usually shocked that there is such a condition.

A person that has never been affected by this disease cannot imagine what the disease is like.  They often think if you eat differently it will resolve.  If you on TPN or J-Tube then they think well if you just start eating you can get better.

Then there are those people that wonder what you did to cause it.  Did you do things when you were young that affected you today.  Could you have taken better care of yourself.  Then they start wondering if they are doing something now that has caused it.  They see you getting sick and wonder if you suffer from Anorexia or Bulimia.  They can't imagine that eating or drinking can make you sick.

Even our families can wonder if they did something wrong.  I just had the conversation for yet another time with my mother.  She is often worried if she had done something differently I wouldn't got sick. She worries that it is genetic and we could have treated it earlier.  It is hard for our families because they want us healthy.

Our friends have a problem accepting it especially if we have changed from the past.  Most activities revolve around food and it is hard to explain that you don't want to go.  You start hiding yourself from people because you don't want to be around food.  You only go to events when there is no food involved.

Awareness month gives you a chance to be in charge.  A time to tell people what it is like without being afraid.  A time to interact with people under our rules.  Instead of food being the center allowing conversation to be the forefront.

It is a time to feel empowered.  Not to focus on what is wrong instead looking at the things you can accomplish.  Time to wear your green and encourage all of your friends and family to join in.  A time to share with people the illness and the symptoms.

Awareness is our month.  A month not to be afraid.  A month where we stand up and do whatever it takes to spread the news about DTP.  A time to not be upset about being sick.  Lastly, a time to build relationships with others that are fighting just as hard as we are.

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.

Ringing and itching ears will it ever stop

I write this in one of those moments where my ears are ringing.  Well actually roaring like a jet plane engine.  I tell people that if the plane would just land and turn its engine off I would feel much better.  Yet, instead of turning off the engine it keeps speeding up and going over my head.

Now the roaring never ends.  It only gets softer and louder.  I have noticed that there are certain things that trigger me most loud music and crowded places.  The more external noise the louder the sound.  Yet, here is something that is quite funny if I use earphones and play soft music it tends to drown some of the noise.

My physician has also told me that there are some hearing aid devices that do the same thing.  Yet, he also said it isn't a guarantee.  I have another secret weapon that I use when I will be in large crowds or around a loud noisy situation.  I use an earplug in my most effective ear.  Now there are some studies that say this makes your ear more sensitive.  Yet, for me it helps with the noise.  I also feel like I hear a little better out of my other ear.  This might not be for everyone and trial and error led me to do this.

I have a joke when I put in my earplugs around friends that if I drown out everyone I can hear you better.  The funny thing that happens is there are times that I forget to move the earplug when I leave the noisy area.  It is in those moments I feel like I am losing my hearing.  The I take out my plug and can hear people better.  So I have learned not to use them in places that have less external noise.

Then there is the never ending itching.  Now I have tried explaining this to people and I often get laughed at.  Yet, I really think the itching is the tickling of the water that just wants to leave my inner ear.  I have found a simple solution it is an ear cleaning stick.  You get them at the pharmacy they come in permanent and disposable.  It also is much safer than a Qtip which you shouldn't use because of the high risk of hurting your inner ear.  The one that I use is the ototek loop.  There are different ones the thing is that you can use it to help with the itching.

This happens off and on.  At least once a week.  It seems to be more intense when I have a shower or a bath.  Seems the water from washing my hair just makes it worse.  I seem to have more of the itching feeling during those times and have to really work on keeping water out of my ears.  Yet, it subsides in a few hours.

There you have it.  The things we go through because a condition people do not understand.  Not saying that I know every solution but as I work through and find new ways of coping I want to share it with other sufferers.  what works for me might not work for you.  What works for you might not work for me.  It is a matter of trying things to see what combinations work best to make life more bearable.

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.

Caregiver's Fatigue

I have failed to mention on my blog that my partner also suffers from several chronic illnesses.  It is amazing how we are able to be there for each other in the hard times.  It seems to never fail that when one of us is feeling a little better the other one goes on a downhill slide.  

I actually think this is caused because when the other person is on a downhill spiral the other person has to take on more work.  The adrenaline kicks in and you do things just to survive.  Then when they top the hill and start to do better the other person starts to crash.  I believe this is true if you are a person that has no illness or if you are both will illnesses.

I know a lot of us have dealt with the loss of our significant other because they can no longer handle the swings.  Chronic illnesses not only effect us but also those that we live with.  Yet, they are put on the back burner because we are worrying about making ourselves feel better.

I have ready many stories where parents have also split over the fact that a child is born with a disability.  The stress on a relationship is insurmountable.  It even goes beyond the walls of your house and into your friendships.  How can you be a true friend when your life is so much different than those that you use to hang out with?

The things that you once enjoyed are no longer enjoyable or you just cant do them no longer.  I know that this seems crazy but after awhile you start to accept when your friends and family quit coming around.  I mean who can blame them.  They are dealing with their own life and there you are adding more on their plate.

The awesome thing happens is when a caregiver is able to look past the illness and just see the old you.  When friends accept the things that you can do and make time for those activities also.  When you find one or two people that you can talk to that will listen but encourage you to see the good.

Well this week is my week to attempt to be the supporting caregiver.  My partner is having surgery and there will be alot of things that she will not be able to do for a few weeks.  Not extremely major surgery but a significant life changer.  One of her chronic illnesses is one that people know little about it is called Fuchs dystrophy.  Amazingly this is a genetic disorder that doesn't show up until later in life.  It causes you to loose your sight over time because your cornea looses it ability to function properly.  It has really taken an emotional toll on my partner because of her love of painting.  So we are hoping the surgery to replace her cornea will be a success.  It will take awhile to know the true effects.  

I just hope that when it is all said and done with we can have a nice day or two when we both feel better.  If you are helping someone that has an illness make sure to take time for yourself.  You need to give yourself a break so that you will not run out of the steam that is needed to hang on for the long distance race.  Chronic illnesses can last for years even decades. Over time they get worse and as a caregiver you need to know it is okay to take that day to do your own thing.  As a fighter you need to allow the people in your life time to rest.  As a friend or family member remember that people with illnesses are still the same inside and even if they cant do what they use to they still want you in their life.  
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.

Chronic Illness Fatigue

My new phrase to describe those 2-6 hours in the middle of the night that all you want to do is sleep. Yet, your body is saying no. The brain gives up fighting eventually and you wind up wide awake dong anything to keep your mind off the sickness and your tiredness.  No wonder most people with chronic illnesses take an afternoon nap.  Our body and brain are non functioning and must be rejuvenated.

Let's break down this snappy new phrase.  Chronic is often seen as something that is persistent and advances over time.  This fits into the very soul of being chronically ill.  Your body and mind do not function within the same grid.  Your body experiences things like nausea, dizziness and pain.  While your mind suffers from lack of concentration, depression, and fatigue.  The body holds the innate body functions.  While the brain takes care of the rest. 

Yet, there are times that the bodies aches and pains override the functioning of the brain.  We are no longer able to separate the highly functioning brain from the chronic conditions effecting our body.  No matter how hard we try our brain finally gives in.  During those moments of Chronic unrest your mind forces you to be awake to deal with what is happening in your surroundings.  

Even though we do not want to have another nightmare.  We would love those few minutes of rest over what is happening in the real world.  What we would do to have a switch that we could use in the middle of the night to turn off our chronic conditions.  I am trying to work on that patent if you have any ideas please chime in.   Yet, since that switch doesn't exists our body wins out and our brain looses its battle of sleep.  Instead it must found something to keep itself free from the way our body feels.  Good thing this has auto check or you would see  how much my body s winning this battle tonight.

Illness is something that most people can grasp.  An illness is when your body is fighting something that t feels is invading it.  Yet, isn't there more to the word illness and how it effects our body.  I truly believe that everyday of every persons life there is some form of illness that they are battling.  Awe the conspiracy theory of the night.

Seriously speaking our body is exposed to illness both day and night.  Yet, there are some illnesses that rage a duel in our system continuously.  We can handle the sniffles, and coughs, the occasional pain from an injury.  We are able to fight these because they will come and go.  Now during the heat of the battle for a short moment our body feels like its all alone and is ready to turn n the gloves.  Yet it is in those moments that our brain kicks in and we eventually  kick the illnesses but.

Yet, what happens when everyday non stop your are sick.  The days you would pray for a short lived stomach bug. \Instead of years of nausea and pain.  The problem with illnesses is that they can make your whole immune system shut down.  A simple cold might take a few extra days to heal.   Yet, with an illness that goes on for a time can lead to more illnesses.  

I actually starting to believe insomnia effects so many who have other illnesses because our brain cannot handle more of the pain.  This illness will knock you eventually to the ground.  I haven't found a quick way to get over insomnia.  I do notice if i keep fighting to sleep i am unbearable to live with.  So my secret s just to give into the insomnia and set up until I  am tired.  Nothing like finding yourself at the table or in a chair our cold.  By allowing your body to sleep naturally it also controls the rest of  the aches and pains.  I am telling you now you can out fatigue your pan so you can sleep

Nice little segaway into the last topic fatigue.  When a body is sick it requires a lot of rest and relaxation.  Yet, even though our body requires a lot of rest to control its fatigue.  The brain is up and kicking what we are fatigued about.  We forget the need to rest and relax.  Our brain says lets get up and at it.  We can rest when the pain fades away.  Imagine letting your brain control your pain.  It might be thought to be the best.  Yet, what happens when it isn't your brain that needs the rest but your body.  How do we shut our self down so that we can sleep.  

My partner calls our dreams the garbage dump.  Which makes total sense we store so much stuff in our brain.  Yet, what happens when the garbage doesn't stop filling out.  I know for me I am more fatigued because my brain kept on going when  needed itself to just shutdown and rest a few minutes.

These are the few steps that I try to remember to get myself ready for sleep.  Start out by watching some stupid non interesting TV show.  Maybe some Lucille Ball a few minutes with the Adams family.  Secondly, when laying down make sure you have taken all of your medicine.  Compete your night rituals.  Nothing like almost falling asleep and realizing your glasses are on and your light is still on.  Your body could have called it a night but now you are stuck in  a conversation between your mind and body.  What else have I missed ?   Nothing like convincing your mind that the house will still be standing there in the morning.

If you have it listen very relaxing music.   I tend to listen to religion music an it helps me fall asleep. The last suggestion is for anyone that has a significant other.  Ensure them if they get up in the middle in the night that you sere not being critical of them rather you were be courteous.  Let them know that you are doing it for them as well as you.  In the morning that catch you in the other room you were not hiding from them rather trying to get your mind and body back on the same playing field.

I just realized my brain and body are caught up with each other for the night.  Quick spell check and off to bed.  If you suffer from Chronic Illness Fatigue the most important part is not to get mad at yourself ride out the wave for tomorrow might just be a better 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.

The Good, The Bad and The Ugly

So as you can tell from my title this is going to be an update on how things have gone since my last post.

The Good --- still not blaming my body for my illnesses.  They have their own effect on my body.  So I am not mad any longer at myself because I am sick.  this has helped me a lot the last few months because it takes strength to say it's not my own action or body that caused this.

I would encourage everyone that reads this to take a moment from their day and say I am not at fault.  My body is not made me sick.  It was an illness that invaded my body and turned it upside down.  I will tell you now it will help change your mind.  So that you and your body can fight the disease as one united front.

Your mind plays a lot into how you handle the circumstances thrown at you.  If you stay positive you can accept things and not get angry.  Anger and madness make you turn your pain inward and outward.  Your family and friends become effected because they want to help but don't know how.  You shut down the world around you because you want this just to go away and it doesn't.  By being positive you allow yourself the opportunity to grow as a person and let others in.  Having an army with you makes this battle much easier than trying to be the lone martyr in the situation

The Bad-- Well I am still sick.  Having been spinning for a week now and cannot stop it at all.  The medicines seem not to be handling the spin and my balance is being really effected.  I see my ENT on the 12th  I think he may be able to do something even if it means increasing meds.  Menieres isn't fun but it isn't going to keep me from enjoying life.  It has taken alot and made me dependent on others for some basic needs.  But I am not stopping...I have friends and family on my side and my army grows each day.

The pacer to regulate my Gastroparesis seems to be acting out.  I am having pain where the pacer is.  It has a tendency to want to move all over my right side.  So I am taking my pain meds.  I saw my doctor in January and he said f I was still having problems at the next appointment it might mean a revision of the surgery.  I go the 10th can't wait.   Might seem crazy for some people but if it is surgery  am going through with it.  I have been having a lot more nausea this month than I was when pacer first went in.  So we will find out what is going on.  Last summer it just turned itself on its own.  Kind of worrying if that has happened again.

The Ugly -- several members of gastroparesis support groups that I am have passed away in the last month.  It is really frustrating to know that people are dying because doctor's just do not understand this disease.  It is not something that any of us want.  I am telling you right now the nausea and pain isn't in my head.  It is something I truly experience.

I feel that there should be a special program that all gastro physicians go through to teach them about digestive tract paralysis.  It is a shame that so many go undiagnosed for years.  When there is a simple test that can be used to determine the illness.

I also feel that the government should take some of its money and do research to find a cure.  I am praying that in my lifetime they will discover a reason this happens and why it effects people so differently.  I have been lucky not to have to be put on TPN or Jpeg.  Lets just say if the pacer stops that is the next step.  Not excited at all.

There also needs to be an awareness program set up for er docs and general practice and internal medicine specialist.  These are the people that see us first.  If they know about the disease they can help us find the right doctors.  I am lucky that my Internal medicine doctor knows about GP and also my Menieres Disease.  She helps me make it in between specialists appointments.  Don't know what I would do with out her.  By the way her appointment is the 26th.

So as you can see there are always a way to turn the negative into positive.  There are good days that we all have and we need to cherish those days.  There are also the bad days when we would rather sleep all day so we do not have to worry or be sick.  Then there are the ugly days when all control is not in our place.  the days when young and old loose their fight because know one has been able to stop this.

About all I can type today in the middle of a spin and need to go to bed.

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.

Enjoy Today

Today will only happen once.  Tomorrow is around the corner.  Yesterday cannot be repeated. Today is the day you can change your life.  So when you get to tomorrow you can be happy with what you did today.  When you look back on yesterday you will be proud of yourself for changing.

I often wonder if I am making the right choices throughout the day.  Did I make the best out of the day that I have to live.  We often spend so much time worrying that today was a good day that we miss the opportunity to enjoy what is happening.

Does this mean that today is a wonderful day?  No but it is the only one you can truly live in.  I know for me I have made many changes day to day.  Yet, when I look back at my yesterdays I am happy with what I have done.  I know that I got through rough times.  I laughed at fun things.

Everyday I wake up I am excited about what the day will bring.  I do not worry about tomorrow because it is always one day away.  I know that if I make today a day when I don't think negative I can be proud when I look back a yesterday.

My life is like a roller coaster.  I climb up the hill.  I go around the curves.  I am flipped through the loops.  Finally coming back down another hill to slide into tomorrow.  I never know what I will meet at the top yet, I am excited to get up there and prove to myself that I made it.  As I go throughout the day I deal with so many things.  Yet, I do my best to be content with what I am doing knowing that things could change tomorrow.

When you have a chronic illness there is only thing that is certain.  There will be days where you could have done more yesterday than you can do today.  Today you may be able to do more things  today than you can do tomorrow.  So because of this live today with full gusto.

There you have it live today and enjoy it.  Live without regrets.  Don't be mad at what you could do yesterday and cant do today.  Don't worry about what you might not be able to do tomorrow.  Live in the present and you will see that you can enjoy each day even with all of the struggles that come your way.

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.