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.