RARE DISEASES DAY

TL 2-28 RARE DISEASES DAY

There are special people in this world who are afflicted with rare diseases.  Today we observe RARE DISEASES DAY!!!  It’s so frustrating to have an invisible disease, especially when it is misunderstood by most people.

The family is one of nature’s masterpieces.  – George Santayana, The Life of Reason

The focus this year is to join for better care.  Caring for people living with a rare disease is multi-faceted.  Some patients have access to treatment, while other have no treatment options.  Some patients are moderately independent while others require intensive physical assistance and equipment.

To understand what is needed for proper patient care is important if we are to help.  We will draw awareness through this post.  Hopefully after you read this, you will not be ignorant about some of the more rare diseases that folks and their families struggle with on a daily basis.

A rare disease is one that affects 1 in 2000.  Over 6,000 rare diseases are characterized by a broad diversity of disorders and symptoms that vary not only from disease to disease but also from patient to patient suffering from the same disease.

Rare diseases

  • May involve chronic illness, disability, and often premature death
  • Often have no treatment or not very effective treatment
  • Are frequently not diagnosed correctly
  • Are often very complex
  • Are often caused by changes in genes

Relatively common symptoms can hide underlying rare diseases leading to misdiagnosis and delaying treatments.  Therein lies the frustration for these patients and their families.

For a database of rare diseases, please click on this link – https://www.rarediseases.org/rare-disease-information/rare-diseases

I have found so much help through the Diabetic Online Community on facebook.  It’s my hope that people dealing with rare diseases might meet up with others facing similar challenges through social media.  There really is strength in numbers.  It helps so much to know you’re not going through a disease process by yourself.  I’m also so thankful for information through reputable websites such as WebMD.  The symptom checker on there can be so helpful in directing a patient to the proper diagnosis, or at least get you started.

For everyone battling an invisible or rare disease, I want you to know God loves you.  He sees what you’re going through and hears every prayer you say.  I’m praying for you too. 

 

 

 

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A COMMENTARY FROM THE HEART

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GOD OWNS THE CATTLE
This is a very scary time in history, not only in our country, but around the world. There is one source of comfort for Christians. Our God never changes, but stays the same. He loves us and cares for us more than anyone. We’ve read in the Bible time and again that we are not to worry about anything, but pray about everything and trust our God to take care of us and supply our every need.

Comfort can be found in trusting Christ. Pray and ask Jesus to help you stay calm and do the next thing. He calls us to be brave soldiers but we need to remember that we are nothing without Him!

Our God absolutely owns His creation. He has all of this mess under control. I don’t know what lies ahead for any of us, but one thing I do know, God will take care of His own.

The next time you are tempted to embrace fear, think about Who holds your hand throughout your life. This is His plan and He loves you. If that does not immediately bring a calm feeling over you, I don’t know what will.

Every day we are closer to our last day on planet earth, whether that means we go to heaven in death or we go in the rapture. That is all we know. No man knows when Christ will return for His own. Christ Himself does not even know – only God knows the exact time.

God has perfect timing; never early, never late. It takes a little patience and it takes a lot of faith. but it’s worth the wait.  – Unknown

Let not your heart be troubled. Believe that God has it under control and that Jesus will take care of you. Ask God’s Holy Spirit to guide and direct your paths with each passing day. He’s faithful and honors those requests. He wants us to lean on Him for guidance and answers. ❤

IRON SHARPENS IRON… FRIENDSHIP

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FOR ALL YOU'VE DONE
When you were a child did you play on the teeter totter??? My friends and I spent hours on it – going up and down while we said little rhymes, like:

Teeter totter,
Bread and water,
Wash a fish with dirty water.

We also had fun with this classic as we went up and down:

Teeter totter up and down,
This is the way to London town,
One foot up, one foot down,
This is the way to London town.

If you were to try to play on a teeter totter alone, you’d find it quite difficult if not impossible. It takes two people to make a teeter totter work correctly. As children we learn how to play together and get along so that when we grow up we will know how to socialize, interact and work together. There are not many things you can do alone – or should have to do alone. A marriage is a great example of teamwork in action. If both people are not completely committed to it, the chances of success are slim at best.

Friendship is another good example of teamwork. Many times in life I have been on a teeter totter with a friend for a time, just to realize that while I’m up in the air, they decide to get off – then I go crashing to the ground! I think that has happened to most of us – but as we get older we just see it as a part of life. Every friend crosses our path for a certain purpose and for a given amount of time. It’s rare that a friendship is really forever. If you have one forever friend, you have a rare gift.

We should ask ourselves three questions before we speak: Is it true? Is it kind? Does it glorify Christ?  – Billy Graham

The ups and downs of any relationship are inevitable, whether it’s a marriage or a friendship. God did not make robots – He made human beings. We are moody and have a vast range of emotions and desires. What works for us one day may not work for us the next. It’s sad when one wants to grow and move beyond the status quo while the other wants to stay stuck in a rut. To say this is unhealthy is a dramatic understatement. Not only is one person unhappy and dissatisfied, but it does not please God either. He wants His children to grow in grace.

Choose the one you play on the teeter totter with very carefully. Make sure you choose someone who plays fair and won’t suddenly get off the teeter totter when they reach the ground, sending you straight down for a crash landing!

If you have the courage to walk away from toxicity in relationships, your life will improve. Once you know people who truly love and care for you, you will wonder why you did not move on sooner. Even if you are alone with no relationship or no friends, you are still better off than you were with the toxic people. Eventually you will find good people to surround yourself with – and life will be better and you will be much happier.

I’ll play on the teeter totter with you – but you have to play nice!

I know a Man who will never let you down!!! His name is Jesus.

A COMMENTARY FROM THE HEART

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BE GONE CABIN FEVER
Yesterday I was sitting at the computer and actually heard birds chirping outside my basement window. It was a reminder of spring, and I am so ready for it, aren’t you? When you have cabin fever, what do you do? Where is your “happy place” when being indoors is making you crazy?

I escape into the internet. Last week I was researching tropical climates and by the time I was finished, it felt as though I had been on an extended vacation. I like those kind of vacations because I don’t have to pack or hassle with security at the airport!

My husband watches movies that take place in tropical settings. Not long ago he watched “Donovan’s Reef” with John Wayne. Movies have long been an excellent way to escape the harsh reality we live in.   “Donovan’s Reef” is not in the public domain, but it is posted on You Tube, so go on over there and watch it.

I’m so blessed in my life and there seems to be an endless supply of inspiration around me. I also like to work on my scrapbook on occasion. Most of our vacations were taken in nice weather and looking at the photos again allows me to re-live the trips!

Of course I’m so thankful for my keyboard and for music! I don’t know what I’d do without that to pass the time during the winter. My keyboard even has headphones so I won’t disturb anyone. I just play for my enjoyment.

The truth is, I’d rather not be stuck inside the house. I am thankful, however, for the ways of escape that are available to me. Some women like to bake when the weather is cold, but in our house that is not a good idea since we are diabetics. Baking would automatically involve eating, and most baked goods are not the most wholesome.

A lot of people like snow. I find it to be an unnecessary freezing of water.  – Carl Reiner

It’s my hope and prayer that you have stayed sane through this winter. Some days it can be a challenge, but I know you can do it if you put your mind to it.

SINGLE TASKING DAY

TL 2-24 SINGLE TASKING DAY

Concentrate all your thoughts upon the work at hand. The sun’s rays do not burn until brought to a focus.  Alexander Graham Bell

How many irons can you have in the fire and effectively manage them?  Remember when everyone was all about multi-tasking?  I’ve never been a fan of multi-tasking.  It’s a better idea to do one single task and do it very well.  Today we celebrate SINGLE TASKING DAY!!!

Administration Assistants pride themselves on being proficient and accurate.  If I was to tell you there was time to do just one thing at a time, I’d be lying.  However, if you can prioritize the tasks, you can perform them more efficiently.

Accomplishing the impossible means only that the boss will add it to your regular duties.  – Doug Larson

It’s such a great feeling to know I’ve completed one project in its entirety before beginning another one.  To write one good post, edit it and make all applicable changes before moving on is the right way for me to work.

I’m reminded of how the character Charles Winchester, M.D. describes his abilities as a great surgeon on the hit T.V. series M.A.S.H.  As he’s scrubbing he explains that he does one thing, he does it very well and then he moves on.  That clip is on You Tube.  I can’t post it here.  LOL!

A study was done at Michigan State University with 300 students to test their ability to persevere through interruptions while taking a computer test.  The interruptions came in the form of pop-ups that required the students to enter a code.  In one case, the interruption lasted a little more than four seconds.  In another, the interruption was 2.8 seconds.

With a 2.8 second interruption, the students made double the errors when they returned to the test.  With the 4.4 second interruption, the error rate quadrupled!

Haste makes waste.  – Benjamin Franklin

I think it’s safe to say the days of multi-tasking are over.  🙂

 

 

 

 

A COMMENTARY FROM THE HEART

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HEAVEN & HELL
I would like to post the movie “Thief in the Night” on here but it is copyright protected, so go over to You Tube and watch this 1972 Christian classic.

In 1972 I was only 11 years old.  We went to a very small church and our youth group consisted of me and another kid that sometimes showed up and sometimes didn’t.  Our youth group was invited to a larger sister church to watch “A Thief in the Night”. Although it’s faith-based fact, the story was the writer’s interpretation of Scripture.  I didn’t accept Christ after seeing this.  I didn’t accept Christ into my heart and life until my 13th birthday.  I was too young to watch this, but it got the wheels turning in my mind.  At age 11, I still thought that if I was thinking about Christ coming back, He wouldn’t.  I took that scripture literally that talks about “When ye think not” – so I tried to think about it all the time so He wouldn’t come back – I knew I wasn’t ready yet.

Now, I’m not going to get into pre-tribulation, post-tribulation. I subscribe to the theory that God knows and when He decides the time is right, that’s okay by me!  This movie was made in 1972 so obviously we’ve been given 40 years to spread the Good News of Christ Jesus to the world.  My point is that the motivation which led to salvation for thousands of teenagers during the showing of that movie was not love, but fear.

I didn’t want to meet Christ with a heart full of fear.  I came to Christ at age 13 because  I saw the suffering of my Lord and knew that He went through all that – just for me. I obviously did not understand everything, but I knew that I needed Christ in my life so I could live the best life I could. When you are motivated to be saved because of love instead of fear, there is a completely different attitude in your daily walk. You are relaxed in the LOVE of Christ instead of looking over your shoulder every few seconds to see if God might be mad at you for something. If you come to Christ in fear, your relationship with Him will be fear-based, not faith-based.

The writers and producers of “A Thief In the Night” were doing what they thought was best – and yes, hundreds of teenagers went forward because they did not want to be “left behind”. I’m not questioning that they got saved, but I pray that they came to the knowledge that Christ loves them and they don’t have to fear the future or fear the wrath of God. I hope they went on to learn about the LOVE of God through His Son, Jesus.

I wish I had been older like the other kids in youth group.  They threw me in with the older kids because, well – there wasn’t anyone else in my age group.  For most activities that worked out, but I should not have been allowed to see “A Thief in the Night”.  If I could make one suggestion to a non-Christian, it would be:  watch PASSION OF THE CHRIST.  Oh, there are subtitles so make sure you wear your glasses.  I saw it at the movie theater – nobody told me I’d have to read and I walked into the theater without my glasses.  When I bought the DVD I finally got to experience the entire movie and it’s beyond amazing.  How can anyone reject the LOVE of Christ?

There is a heaven to gain and a hell to shun, that’s for sure. I hope we all come to realize that we need to be serving the Lord because of His marvelous LOVE for us and not because we fear being eternally separated from Him.

May God’s love and peace be with you. ❤

A COMMENTARY FROM THE HEART

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HE WANTS TO HELP

The moments when I am able to just be still and know that God is God are the most precious times I know. I know people are busy and it’s a busy world, but if you can just leave the busy behind and shut yourself off for just a few minutes every day. Be alone with your Creator and let Him speak PEACE over you. What a difference that would make!

I know there are some who don’t believe it. Find out for yourself. Don’t ride on my cloud – get your own. Spend some alone time with God. Pray and read God’s Word. This life is not difficult, but there’s a temptation to “skip” devotion time which is not good.

It’s interesting that God gets no credit for anything good that happens, but then when something bad happens He is suddenly the scapegoat and the one who is automatically blamed. People who have a close personal relationship with God know better than to go there. God does allow some things, granted, but He allows the good all around us every day and it’s taken for granted.

God wants the very best for His precious children. He does not desire that any should perish but that all come to a saving knowledge of Him. He loves and cares for you so much.

Peace I leave with you, my peace I give unto you: not as the world giveth, give I unto you. Let not your heart be troubled, neither let it be afraid.  – John 14:27

There’s not enough money in the world to buy the PEACE that God gives. There are not enough medications to mimic the PEACE that God gives.

There are 4 easy steps to live in God’s PEACE:

Pray… ask… receive… bask!

The LORD will fight for you; you need only to be still.  – Exodus 14:14

The LORD will fight for me! BOOM! 🙂