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.

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.