Simply danLrene

Dare To Dream

Do You Work For Your Dreams?

just keep dreazming
As most of you know, I am a big believer in going for your dreams but how many people are willing to give it all to achieve those dreams? I see people who say they are doing all they can to get their life long dream but in reality, they are just sitting there waiting for the dream to fall in their laps or for someone else to do it for them.

We moved here on a dream. We worked for a year saving every penny we had towards this dream. We did not eat out, buy pops or snacks, did not buy new clothes or technological toys. We put everything we had on the dream and we made it here. Took us a year to do it, but we made it. And that is because we wanted this dream so badly we could taste it.

I have new dreams all the time. Right now my dream is to be back standing again even if I am walking on the forearm crutches and I am giving all I have within the range of not crashing myself to accomplish it. I have a lot to work around health wise but that does not keep me from following my dream. I have other dreams too that I am working on and hopefully will accomplish them. One dream is to return to Italy and I probably will not make it but I sure can dream about it.

Dreams keep us going. They give us the incentive to keep trying and keep working but I have found the most important thing is your drive to accomplish the dream. We can all make excuses why dreams have not come true but I think people find it harder to place any of those excuses on themselves or to take fault when things do not work out.

Self evaluation is so important and unfortunately it is easy to lie to ourselves and everyone else when something does not work. I think it takes a person of authenticity to be able to say they did not put in the effort they should have. I have been on both sides…the denial that it was my fault side and the side of saying “you know what..I was just plain lazy and did not put forth the effort” side. And so I can say with experience that it feels so much better when we can admit our failings so that we can go on to accomplish dreams who still have. That is how we build our inner core up and our character.

You are never too old to dream. Keep dreaming…keep working towards your dreams…never give up. Dreaming gives us hope and hope keeps us going in the worst of times.

start doing

July 28, 2014 Posted by | Uncategorized | , , , , , , | Leave a comment

Living In The Present

small simply danLrene

video by kalebmann98

(I do not own the rights to this video. It is for educational purposes only)

I think sometimes we get lost in “time frames” in our lives. Some live in the past, some are always looking to the future and they both miss what is happening at the moment. They do not know how to live in the moment and enjoy each moment life gives to us.

Live as if you were to die tomorrow. Learn as if you were to live forever.  Mohandas Gandhi

A friend sent me this poem and the words filled my heart and made me realize a few years back that this moment right now is all we are guaranteed. We have no guarantees of tomorrow and we certainly can not go back to yesterday.

“Living In The Moment ”

 I may never see tomorrow;

There’s no written guarantee

And things that happened yesterday

Belong to history.

 I cannot predict the future

I cannot change the past

I have just the present moments

I must treat them as my last.

I must use this moment wisely

For it soon will pass away

And be lost forever

As part of yesterday.

 I must exercise compassion

Help the fallen to their feet

Be a friend unto the friendless

Make an empty life complete.

The unkind things I do today

May never be undone

And friendships that I fail to win

May nevermore be won.

 I may not have another chance

On bended knee to pray

And I thank God with a humble heart

For giving me this day.


I used to be one of those people who was always thinking ahead. I would spend so much time thinking about and planning what I WAS going to do that I forgot what I AM doing. After my health changed, I quit taking days for granted and realized that I better make the most of each day because I might not have as many days as everyone else. “Live Like You Are Dying”….make every day the best and the fullest. Live it as if it is your last day. Make sure you have said all the words you want to say to your loved ones, that you have told them how much you love them and how proud you are of them. Put aside things that are really not that important in the realm of things.  Put aside things that are not that important if you were to die today. Sometimes petty things take up too much space in our lives.

 I do not want to foresee the future. I am concerned with taking care of the present. God has given me no control over the moment following. Mohandas Gandhi

Living in the moment does not mean we should not dream for the future. It simply means that we can not spend our whole life on a future we may or may not have. If we miss all the joys of today, we can never get them back again. They are gone forever. That is why I do not believe in holding on to anger or resentment and believe in forgiving easily. I do not want to go to bed at night with hard feelings in my heart, hurt or anger and risk either me or the person I have these feelings towards dying and we never get to make amends.

Life is too short and if we spend all our time trying to please everyone, trying to make people understand how bad we feel or how hurt we are, or carry resentment around in our hearts or hurt and anger, then we have lost the time we could be spending with those we love. Everyone may not love us like we want them to but I believe that people love in the only way they know how and it may be the best they can love us.
If you knew that you had two days before you were to die, would all the things that keep you upset be so important? Would you still care if people did not get your chronic illness? Would you still be mad because friends went out to eat and did not ask you? Would you still be angry or hurt with family so much that just do not seem to “get it”?
How we allow our emotions to control our lives is a choice and I prefer living my life telling those I love them that I do and telling them often. I choose to forgive quickly and not hold a grudge. I choose to hug and help those around me as much as I can. I can not take things with me so why not use things to help lift others up. And most of all, I choose to live my life trying as hard as I can to have no regrets when I die or when someone I love dies. I do not want to be sitting there saying to myself  “I did not get to tell them I love them before they died.” or “Why did I allow myself to stay so aggravated, angry, etc and not be forgiving and miss time with them?”  For, we can never get back time once it is gone.

 image from

Live as if today were your last day and you would never have another chance to be with those you love, never have another chance to forgive those that hurt you, never have another chance to make amends with those you have been upset with, never have another chance to show people how much they mean to you. Life as if you were dying tomorrow.

July 22, 2014 Posted by | All, Uncategorized | , , , , , , | Leave a comment

I Shall Pass This Way But Once

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One of my very favorite quotes and a belief system that is infused within me. I believe in living the moment and letting others know I love them now. I am that way with those I love and kind to those I do not know now for tomorrow may be too late.

My mountains, my mountains…oh,how I love you. These mountains will be forever in my heart and mind. I turn to them when I am feeling bad and feel the air coming off the mountains and smell the sweetness of nature and they soothe my soul.

The spirits are abound on these mountains of ancestors past and they fuel me to keep my warrior going. We could learn much from the native Americans from their views on how to treat the mother earth, how to treat people and how to help others. All was about Mother Earth and all the beauty there in.

But, I shall pass this way but once and so I want to make sure I do all the good I can, love all I can and help all I can so that I leave here with no regrets.

July 21, 2014 Posted by | All, Uncategorized | , , , , , , | Leave a comment

Older Than Dirt Wisdom

small simply danLrene

Life is so hard and we make so many twists and turns and have to make so many decisions that sometimes we wonder if we are doing the right thing.  I had a friend tell me that they were doing something to help someone but were miserable and cried almost every day about doing it. And so these are “older than dirt wisdom”  things that I learned along the way. Does not make me right but might help someone as the plod along the rough journey called life.


Only our Creator knows when we will die. We will not die a day sooner or a day later, so leave the dying to the Creator , to our God and focus on living.

Making Decisions

Making decisions requires five things. It requires you to listen to  God, to your head, to your heart, to your head again and finally listening to God again. Our hearts are wonderful things but sometimes they make us make decisions based on guilt, pity or some other emotion and then we find that we are miserable.

How we are made

I love this expression for it is so true. We were created with TWO ears and ONE mouth. I believe the intent was for us to listen twice as much as we talk. And because we only have one mouth, make what goes in and comes out be extremely gentle and easily digested.

Standing up for what is right

It is so easy to be passive and ignore the tragedies and wrong doings going on daily. We can not change the world but we can change what is in our corner of the world, one piece at a time….starting with ourselves. It is amazing how good it feels to stand up for what is right instead of going along with the crowd.

Distance makes for clarity

Sometimes we can be so close to something we can not see the reality. Stepping away for a while gives us that 20/20 vision we need to make smart decisions


Friends are a wonderful thing. Keep in mind 345 “friends” on Facebook does not make them friends. They are acquaintances. If you come through life with only ONE close friend, you have come through life with something very precious that will last you your whole life.


Never let a day go by without telling those you love that you love them. Actions speak louder than words, but they still love to hear the words too.


Never let the sun set on your anger. Each day that you allow anger to continue, it becomes easier to stay angry and never heal the gap. “Whatever is begun in anger ends in shame.”~~Benjamin Franklin

We are not indispensable

In life here on earth, everyone can be replaced. No one is indispensable. Someone can always do the job we were doing. Never think you must stay where you are because something might fall apart without you. It will not. Life will go on.

Communicating with Others

We all speak from our own “place” and we all use different words with our own definition. What means one thing to someone might mean something entirely different to another. Always ask “what do you mean by?”  for it saves many arguments. And do not react until you are sure you know what the other person is Really saying.

It is OK to Say NO

It really is ok to say No, I can not…..No, I do not want to….and not get caught up in things we really do not want to do. I remember too many times agreeing to do something and then wanting to kick myself afterwards. Those that love you will still love you if you say no. They might get mad for a little bit, but they will get over it. Do not say yes out of guilt. You will hate yourself afterwards. And the more you learn to say no, the more you will find you have time to do the things you really love, with those you love.

Take Life in Bites

I read once that the first bite of food, no matter the item, is the best taste. Each bite after dims in great flavor as your taste buds get used to is. I love going to buffet’s and I take one small spoonful of each thing and sit and savor the flavors. My plate looks like a sampler. So sample life one bite at a time. Too much of something dulls the excitement and flavor. Remember the days of youth. How exciting things were. Rekindle that as a child. We do not have to have everything but we can feel like we do by enjoying what we have.


Laughter is a great healer and helps you to get rid of stress. I have laughed til I cried even in the midst of really hard times.  We do not have to be all serious or sad or down and never laugh just because something bad happened.

Never Defend Something Blindly

Believe and have faith in what you believe in but always make sure you are defending it with facts and not just emotion. When you defend something, ask yourself “why?” and the reasons should be more than “it’ is wonderful” or “it’ is great”.  You should be able to tell valid reasons. Otherwise we become like the groupies who follow this or that star all over the globe but can not really give you a good reason why.

Do Not Depend on Others for Happiness or Validation

Our happiness should not be defined by “things” or “people”  or “places” for those things can disappear. It comes from inside us. Neither should we let someone be the only thing that validates us or tells us we are worthy. For they are only human.  Learn to validate yourself. You know when you have done a good job or when you have done something worthy. Be proud of that and validate from within that what you did is good.

Treat Each Day Like It Is Your Last

Every day is a gift. Treat each day like it is your last and see the wonder and awe in each one.

Let Your Conscience Guide You

Our conscience tells us when we are doing something we should not be doing. If we are feeling uncomfortable, unhappy, angry, etc with what we are doing….it is time to step away from it and figure out why.

I love this. Read it once a long time ago.

These 3 things once gone you can never get back: Time, words and opportunity

These 3 things in life can destroy a person: anger, pride and unforgiveness.

These 3 things in life are the most important: Love, family/friends and kindness

Your Self Value
whatever value you place on yourself…others will too

“Write the bad t hings that are done to you in sand but write the good things that happen to you on a piece of marble.”  Arabic Proverb

July 20, 2014 Posted by | Uncategorized | , , , , , , | Leave a comment

No Refunds on Time

small simply danLrene

Time, like grains of sand filtering through your fingers, is one of the most elusive things in our lives. Although all of us are conscious of time, it tends to rear its head more in the form of “I have to be there at 5 o’clock”  or “this takes an hour to do” and not that time has gone by. Time passes in the twinkling of an eye and is gone before we know it.

image by

It seems like only a short while ago, I was a child and living at home. Now, here I am a grandmother. The time whisked by in the twinkling of an eye. First I was a child, then I had children and now my children have children. Where did the time go?  It went in the twinkling of an eye.

As I look at my granddaughter, I am very aware of time. She is already so grown. In just a few short years, she will be out of high school. After my health changed, I was afraid I would never live to see grandchildren and now she is a teen.  I can still see my boys when they were toddlers and now they are grown young men and I am so proud of them. Where has the time gone?  It went in the twinkling of an eye.

When we are young, we think we have all the time in the world. Unfortunately, we do not know how much time we have. No one is guaranteed tomorrow. So, I wonder do we make the best use of our time. I have known friends who spent all their time fussing and arguing and in chaos and I want to tell them they are wasting precious moments that they can never regain. Time flies by in the twinkling of an eye.

When my health went down, I had to learn to not let things bother me so. Now, I will not say I succeed all the time but I do pretty well at this. Like that serenity prayer…I had to learn to accept that there are things I can not change.

The Serenity Prayer

GOD, grant me the serenity

to accept the things  I cannot change,

Courage to change the

things I can, and the

wisdom to know the difference.

Reinhold Neibuhr-1926

I have learned not to waste my time, emotions and health on things that will not matter months from now.  Life is flying by and when I look up it is gone in a the twinkling of an eye. So, I want to cherish every moment I have.

Time has flown by since my granddaughter was born and she is turning into a beautiful young woman. I want her and my sons to know how much I love them…how much they mean to me. I want my family and family of choice to know how much they mean to me now while they can feel it. I do not want to stand at their graves and wish I had told them, nor do I want them to stand at mine…and wish we had spent the time and love on each other.  I do not want to waste precious time on silly arguments or fussing for we each only have so many days and none of us knows the hour we will leave here.

If You’re Ever Going to Love Me

If you’re ever going to love me
love me now, while I can know
All the sweet and tender feeling
which from real affection flow.
Love me now, while I am living;
do not wait till I am gone
And then chisel it in marble–
warm love words on ice-cold stone.

If you’ve dear, sweet thought of me,
why not whisper them to me?
Don’t you know ‘twould make me happy
and as glad as glad could be?
If you wait till I am sleeping,
ne’er to waken here again,
There’ll be walls of earth between us
and I couldn’t hear you then.

If you knew someone was thirsting
for a drop of water sweet
Would you be slow to bring it?
Would you step with laggard feet?
There are tender hearts all round us
who are thirsting for our love;
Why withhold from them what nature
makes them crave all else above?

I won’t need your kind caresses
when the grass grows o’er my face;
I won’t crave your love or kisses
in my last low resting place.
So, then, if you love me any,
if it’s but a little bit,
Let me know it now while living;
I can own and treasure it.

(Author Unknown, though many have claimed authorship)


video by 

Or as I tell those I love……..I love you Forever and a day. :)

July 19, 2014 Posted by | Uncategorized | , , , , , , | Leave a comment

An Oldie But Goodie

small simply danLreneI Once Complained……

“I once complained I had no shoes…..until I saw someone who had no feet”

 I love this for it puts things into perspective when we complain. Sometimes what we think is so important turns out to not be as important as we thought in the realm of things.  I think about life often for I have fought daily to be here. And the older I get, the more I realize that few things are really important in life and we waste a lot of time on things that seem to possess us and takes part of our lives from us in little chunks without us being aware.

“Life is not measured by the breaths we take but by the moments that take our breath away.”  There are so many free things in life…the smile of a baby, a sunrise, sunset, rainbow, the joy of someone you love when you surprise them…the beautiful moon, your children, grandchildren, and sometimes the least little thing you least expect that takes your breath away and you just sit there in awe.  As I look around our little home, just having this home..this dream..takes my breath away.

“Don’t let the fear of striking out keep you from playing the game.”

Dreams are often never realized because we are afraid to make that first step. Fear can be immobilizing. I think I had to reach the point in life that I could say….”ok, what if I lose everything I have?” and the answer finally hit me and it was..”then I will start is only things.”

I love watching the clouds and seeing the faces and the changing. They help me to realize that life changes every minute of every day. Sometimes I want to put on the brakes and say stop…slow down. I really do not like it when things are fast paced, hectic and rushed. Maybe it is my southern blood…I am easy going and laid back. :) And when things get too hectic and rushed, then I want to just pull off into a room where it is quiet.

“The weak can never forgive. Forgiveness is the attribute of the strong.”—Mohandas Karamchand Gandhi 

Forgiveness…too bad adults can not be as this wee little child here…forgiving always. It is only when we get a little older we carry the grudges. This smiling face is one of the important things in life…my sweetpea. My sons are and those I love are. All other things come in second. I may not always agree…but I always love.  I love this picture of sweetpea for she had just discovered she could put this canning jar ring on her arm like a bracelet and sat there putting it on and then squealing with joy and taking it off and putting it back on. Memories..something that is precious.

To my baby …..with his baby :)

“There are two types of people—those who come into a room and say, ‘Well, here I am!’ and those who come in and say, ‘Ah, there you are.'”—Frederick L Collins

and so I say to you all…as I enter into this room…..

“Ah, there you are..I am so glad to see you.”

July 18, 2014 Posted by | All, Uncategorized | , , , , , , | Leave a comment

Aspire to Inspire

small simply danLreneWe all need and want to fill like we have a purpose in life. As I once read, we may not can change the world but we can change our corner of the world even if it is just ourselves. I feel everyone has a purpose. Some aspire to do great things and others aspire to just help. If we all aspire to inspire others to just be, we have done something.

Google says :
  1. direct one’s hopes or ambitions toward achieving something.
    “we never thought that we might aspire to those heights”
    synonyms: desire, hope for, dream of, long for, yearn for, set one’s heart on, wish for, want, be desirous of;

Whether we want to be or not, we are all role models, albeit reluctant role models. Someone is always watching. It may be people we know and it may be perfect strangers. It is always our children and those close to us but people who may see is in passing still look at us and learn from our actions. It can be good things they learn or bad things.

I believe we should all aspire to inspire others, to lift others up and help them find that place that makes them want to keep going; want to change something in their world or the world in general; want to stand up for something even if it is standing alone.

When we aspire or have hopes and dreams, then we are working towards something and that gives us motivation to get up each day. My blog is my motivation and when I have sick times like of late where I miss doing the daily blog, I feel like I am not fulfilling my dream.

I aspire to make my life better and I am doing that along with son by changing our stress level, by simplifying our lives, by changing our diet and supplements and getting away from processed foods. And I hope by doing this, I inspire someone else to take control of their life and try to change it where it is better and they have more peace and harmony.

I have found that by helping others, I help myself. It takes my mind off my problems so that I do not become someone that talks about my problems to anyone and everyone that will listen. It also helps me see that there are others worse off than I am in life. That does not diminish what I have wrong. It simply means that it could always be worse and so I choose to focus on the positive.

I aspire to inspire. What simple words and yet from the day I started this blog that is all I wanted….to touch just one person and lift them up or inspire them to keep going in life. When someone writes me and tells me that they were uplifted by what I wrote, it lifts me up so much.

So always aspire…aspire..hope….dream…work towards doing things that inspire others for when you lift others up, you will lift yourself up. We might not can go out and change the world, bring peace to the world, solve the problems of those starving or orphaned but we can change things in our little corner even if it is to change our own lives. And once we do that, we can move on to help someone else change their life.

July 15, 2014 Posted by | All, Uncategorized | , , , , , , | Leave a comment

Fill Your Heart Up

small simply danLrene Ever thought about what you fill up your life with? We go on a trip, we fill up our vehicles with gas. It is already known that we should eat breakfast and fill up our stomachs before starting the day. so that we have the nutrients to carry us through the morning.  We take care of our bodies with food, baths, supplements, lotions, rest and even things like air conditioning and heat. Just like we take care of our cars with oil changes, brake checks, fluids, gas, tires, etc.

How many of you think about what you fill yourself up with emotionally each morning as the day starts? Are you filling your heart and head with good emotions and good thoughts? Or do you wake up with the unpleasant thoughts of yesterday or the day before still brewing in your minds and carry them into today.?

I wake each morning thankful for what I have and not resenting what I no longer have or can no longer do. I lay there in the semi dark thinking about my faith, my loved ones and how blessed I am to have certain people in my life. I give to God all those things that are not mine to deal with. That is all those things that involve anger, envy, greed, jealousy and other negative emotions. I refuse to let my day be ruined by such emotions.

I listen to music that inspires me and lifts me up. My favorite song is “You Raise Me Up” by Josh Groban. It fills my heart and reminds me of who is in control. This song and others clear my head and remind me to let go of what I can not control and to focus on doing the best I can.

video by Warner Bros. Records

I let go of grievances and forgive for carrying bitterness and anger only hinder me and keep me from filling that part of me with love, joy, patience, and happiness.

When I get ready to sit up, I pull up things to read that uplift me. I avoid Facebook and other social media when I start my day for I am wanting to fuel my heart and soul for the day ahead not fill it full of drama. There is a time for social media later in the day.

What are you fueling yourself with for each day. What can you do besides eat your breakfast and take your vitamins to help enrich your day? What things give you inspiration and motivation so that you face the world each day with enough fuel of emotional uplifting to carry you through any rough spots?

Because of the amount of pain I live with each day, I love things that help take me away from pain, not add more to it. Stress and drama, fighting and fussing, etc all deplete us of the emotional energy we need to face each day. What can you do to start your day with calmness, peace, joy and happiness and that will fill up your emotional tank so that you are not on empty before the day is half over?



July 12, 2014 Posted by | All, Uncategorized | , , , , , , , | Leave a comment

All It Takes Is One Person To Make A Difference

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I grew up in a time where heroes were important and the people chosen as heroes stood for something good. They were not given awards they did not deserve but were an example to follow when living life. We do not see that much anymore. I can only think of a few people I call heroes anymore. We need those strong people to look up to, to emulate and to learn from.

Recently I came across a story of an unsung hero that was not really recognized until much after the act he is known for. His name is Sir Nicholas Winton and he is credited for saving 669 children during the Holocaust. He is just one of the heroes that helped save children from the Holocaust.

According to Wikipedia:

“Sir Nicholas George Winton, MBE (born Nicholas Wertheim; 19 May 1909) is a British humanitarian who organized the rescue of 669 mostly Jewish children from Nazi-occupied Czechoslovadia on the eve of the Second World War, in an operation later known as the Czech Kindertransport. Winton found homes for the children and arranged for their safe passage to Britain.”

From LifeBuzz

“After the war, his efforts remained unknown. But in 1988, Winton’s wife Grete found the scrapbook from 1939 with the complete list of children’s names and photos.”  And they were able to track down many of the children that Sir Nicholas helped save.”

video by bleuscorpio

This video brought tears to my eyes because he appears to be such a humble man and never flaunted what he did to help these children. The look on his face when he realizes that they are there with him is so touching.

I started researching and found this video telling how Sir Nicholas Winton went about creating a program to save these children. All it took was one man willing to stand up and do something and to get others involved.

video by WaldoPepper62

I hear people say they can do nothings but we can. We might not can do what Sir Nicholas Winton did but we can do something to change our corner of the world if nothing else. Evil triumphs because people do nothing…even good people.

triumph-of-evilimage from

We need heroes today and more importantly, we need men and women who are willing to stand up for what is right and are willing to act upon that belief. We need more heroes like Sir Nicholas Winton who saw the problem and set about trying to find a solution and in the end saved 669 children. But, wait, that is not the end of what he saved. He saved the children and grandchildren and great-grandchildren of those 669 children. Like the ripples in a pond his good work carries on as others are picking up the torch to help those in need.

Remember the days where it was easy to tell the good guys from the bad guys in the movies? The good guys always wore white hats and the bad guys wore black hats. It is not so easy today to tell the difference as so much change has happened. We can not go by appearances or by words. We can only go by results. I used to say if a person’s words did not match their eyes then my alarms went off and they still do. Unfortunately, some have learned the cunning needed to make their eyes seem compassionate and loving while there is malice in their hearts.

The documentary trailer about Sir Nicholas Winton. I can not wait to see it.

video by trigonproduction

A quote by a young lady on the video was filled with such wisdom for such a young age that it struck me and played over and over in my head. She also went on to say she wanted to be as much like Sir Nicholas Winton as possible. That is what being a hero is. It is being a role model that others want to emulate. And we are all role models whether we want to be or not so why not be a good role model.

“Now and then there is still evil in the world. It is up to us to not let this happen again.”

I have always said that complacency makes us complicit. If we sit idly by and do nothing when we see corruption, evil and wrongdoing, then we are just as guilty as those doing it. Sir. Nicholas Winton was definitely NOT complacent. He put his own life in jeopardy to save as many children as he could and then he lived his life as if he had done nothing. Talk about unsung heroes. We might can not fix all the wrongs in the world by ourselves but we can right some of the wrongs in that pile. We can not be swept away by high emotions at that moment and allow evil to take over the freedoms we have worked so hard for. We also can not sit idly by and allow such things as the holocaust to happen again. We can not pretend that nothing is happening.

We all can be heroes in our own way. I see many doing it by working to help those in catastrophes but we can also help right wrongs such as those bullied or abused. We can help with those who are suffering due to economic impact. The list goes on and on and most importantly we can stand up and fight for what is right. That is what makes a hero…someone who stands up even if they stand alone.

“Be prepared always to help other people if there is an opportunity to do so” Sir Nicholas Winton

July 7, 2014 Posted by | Uncategorized | 2 Comments

The Other Side Of The Wall

small simply danLrene

This blog is for all my friends and loved ones that suffer with chronic illness, chronic pain and disabilities that make getting outside of the house very hard and for anyone that is more housebound than not. I have so many that ask me about what to do with people who push and push them to get out and they just can not or feel almost panicky at the thought of going out into the world.

other side of the wall

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Now, I titled this The Other Side Of The Wall because those of us that are chronically ill live with this wall between us and healthy lives and sometimes that wall is a prison and sometimes it is our wall of a safe haven because it is our homes where we feel safe and secure and is very familiar to us.

I know that many do not understand why there are so many times that I prefer being in my home, in my one room world and not out in the world. And many other chronically ill people feel that way too. Our homes become our safe havens because in our homes are the things that make us feel less painful and sick. We have our handicap things like for me my hospital bed, my power chair, my roll in shower and handicap toilet and the quietness where I can shut out the loudness of the world for noise triggers my pain and illness. This also includes things such as my windows that are bubble wrapped and covered for darkness because bright lights and dust from outside trigger my pain and illness. For others it is walkers, canes, their couch that they are used to or their recliner, their shower stools, their easy way of fixing the food they are used to and just being in a place where everything is familiar.

A friend recently went on a trip for a family event. It was the only way she could be part of it. But, she had to endure driving, sleeping in a strange bed, being around so many people for crowds often trigger our exhaustion and sickness, eating different foods than she is used to, etc.  The trip was worth it to her because she got to be with family but now she will pay a heavy price for this venture out. But, she will be able to rest and recuperate because she is back on the other side of the wall into her home that is her safe haven.

Friends think we just do not want to go out and that is not true. There is nothing we would love more than to go to stores, to have coffee with friends, eat dinner out, to go shopping or just for a ride in the country. I have had people tell me to “just take another pain pill” as if that would solve the problem never realizing that I can not just take another pain pill without affecting my health.

It is so hard for those not chronically ill or disabled to understand that what is our prison is also our safe haven. We hear comments about how they would go crazy if they had to stay home all the time. I wake up in the mornings early and it is my favorite time because it is quiet, I can quietly read on the internet and sip my tea and just enjoy the day beginning. I have all I need here to make my life easier and it is very safe here. That does not mean I never leave here. It means that here is easier on me and my health. I do try to go to my tiny little one room church when I can which in turn means I come home and fall instantly into my bed and sleep dead sleep for hours.

When people are healthy, they can often take for granted what they can do. When a person is healthy they can walk where they want, they can go where they want, drive where they want, eat whatever they want, be at events with lots of people like big football games if they want, and they do not have to worry if there will be handicap entrances, handicap bathrooms, a place to go to get a little quietness to calm their senses from all the noise and activity, a place to lay down if they need to, seats that are comfortable, how to carry oxygen and will it last long enough, and how to avoid sensory overload. That is the other side of the big wall that separates us from the healthy people.

And so, while sometimes it feels like we are stuck in a prison, our homes actually become our sanctuary of safety..of comfort and of convenience. My son often compares me going out of the house to having a baby where you have to plan what all you need to take.  My other son when I kept my Sweetpea for the day or over night, would load up their playpen, high chair, stroller, bag with diapers, milk bottles, baby food, toys, car seat, bouncy seat and any medicine she might need. It took planning to make sure all was there to make sure taking care of her was done.

The same thing goes for a chronically ill person. We have to plan all that we need to last for the amount of time we will be out. It depends on what each chronically ill person needs as to what is packed into the vehicle. For me, we must consider how many bottles of oxygen will I need, my special food since I am on a special diet, my bottles of drinks, a change of clothing should I need it, my power chair, pillows so I can lay back in the van, a jacket and my blanket for when I have chills, my medicine bag so that if we are late, my forearm crutches if the bathroom is not handicap and I can not get my power chair into it, and the medicine bag so that I have all my medicines and will not miss a dose if we are late getting home. We can not just go and jump into the vehicle and go.

This is why we often dream of family and friends who come to our house in small numbers and bring dinner and not making us feel left out because we can not get to their house. It is not we do not want to be there it is that we know we can not handle the trip, the crowds, the lack of handicap conveniences we have, etc. And many chronically ill find themselves alone over and over because those healthy do not know how to include them in activities because they are ill. And some friends and family do not include them because it takes too much time and effort for them to include us. So, education is really necessary and creating a list of sorts of things they can do to include us in their lives is a big help.

My other son had me get online to watch my Sweetpea at the state rodeo festivities. I could not go and I wanted so badly to see her ride her horse. But, I got to see because it was on the internet. I cried when they called her name. It was awesome to be part of it. Other times, like the father daughter dance on Valentine’s Day, I get pictures when they are going. It makes me feel part of it. Many people have the tablets or phones that do live video taping and can take videos for those of us chronically ill of special events and we can see it as it happens from our safe place at home. Those healthy can bring the wall down some for those of us chronically ill by doing things like sending text pictures, videos, and letting us see what we are not physically able to go to. Do you know what it means to see your granddaughter ride in real-time from your hospital bed? I do and I can tell you it was one of the highlights of my life.

The wall does not hold the chronically ill in. It is something that does separate us from the healthy because the healthy do not understand what we go through. One day they will be if nothing else, old and lose ability and they too will have a safe haven. And then they will understand why we like being in our safe havens. Until then, we can hope and pray that our loved ones will pick up some of the things we deal with and start doing things to keep us in their lives so that our worlds expand….things like my sons do. I realize I am the rare case and I am so blessed to have sons like I do. I believe we can change the world one day at a time working on solutions not just focusing on the problems.





July 1, 2014 Posted by | All, Uncategorized | , , , , , , , | 4 Comments


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