Rare Disease Day, I have a rare disease.

Today is Rare Disease Day. “Any disease, disorder, illness, or condition affecting fewer than 200,000 people in the United States is considered rare.” (rarediseaseday.us) There are more than 7000 rare diseases and disorders in the US. That comes to over 30 million people who have a rare disease. It’s not so rare huh?
Some of you may know that Ménière’s Disease is a Rare Disease, it is listed on the National Organization for Rare Diseases (NORD) registry.  The information they have listed about Ménière’s  Disease is interesting.  Please go check it out.  Even I learned a thing or two.  🙂

Benign paroxysmal position vertigo (BPPV) is also on the Rare Disease registry.  You can read more about it here.  I’m very impressed by the information available on NORD, if you have a rare disease, or want to know more about one, I urge you to look it up on the National Organization for Rare Diseases (NORD) site.

Having a rare disease normally means that there is little known about the disease, we go from doctor to doctor hoping to find out more.  Hoping to find help.  More research is needed for all rare diseases.  Contact your local representative to speak out for your disease and make sure more research is provided.  You can find out how to contact your representative here.

“NORD’s Rare Disease Database provides brief introductions for patients and their families to more than 1,200 rare diseases. This is not a comprehensive database since there are nearly 7,000 diseases considered rare in the U.S.”  *from NORD website

 

Do you have a rare disease?  Curious, have you ever contacted your representative about it?

 

 

 

Mindfulness Monday – Lao Tzu

tulip-magnolia

“When you realize there is nothing lacking,
the world belongs to you.”

~Lao Tzu

 

“Nature does not hurry, yet everything is accomplished.”

~Lao Tzu

 

 

*all images on Picnic With Ants created by W. Holcombe unless otherwise noted.  Please do not use without permission.

Mindfulness Monday – Life

flower-computer-painting

“We must be willing to let go of the life we have planned,
so as to have the life that is waiting for us.”

~ E.M. Forster

 

“Rather than being disheartened by the uncertainty of life,
what if we accepted it and relaxed into it?
What if we said,
‘Yes this is the way it is;
this is what it meant so be human,’
and decided to sit and down and enjoy the ride?”

~Pema Chödrön

 

*all artwork on Picnic with Ants created by W. Holcombe unless otherwise noted.

 

 

Are you a Mary or a Debbie?

Today I’m happy to introduce a new friend, Kim, from her blog, I Tripped Over a Stone.  She is an amazing writer; I am so pleased she decided to write a little post for us.  Please jump over to her blog and check her out, you’ll be so glad you did.  

Hello my name is Kim. Wendy asked me to scoot over here from my blog and do a guest post for her. I happily accepted. You see, I consider Wendy a friend. We are similar in many ways, besides having invisible illnesses, we have the same kind of humor. I have no doubt we will one day meet in person.

I have Fibromyalgia Syndrome, Wendy has Meniere’s Disease. These are classified as invisible illnesses and both are chronic conditions. Neither is really a great one to have. Would you want want vertigo, inner issues and migraines or would you pick constant pain, difficulty sleeping and cognitive difficulties? Choose. Yes, choose right now! Fibromyalgia Syndrome or Meniere’s Disease?

Now that you have picked your illness, how would you handle this new, life altering, invisible illness? Would YOUR life be over? The answer is yes. Your life, as you know it, will be over. You will have to say goodbye to the old you and hello to this new person who feels like crap most of the time and is a shell of who you worked so hard to become. You will probably lose your job, most of your friends, and some of your family members. Since your illness is invisible, you will be deemed unreliable even though its your health that’s unreliable, not you. You will be scoffed at for being on any form of assistance and called a liar because you do not look sick. Welcome to your new life.
Now you get to choose again! Are you going to be a Debbie Downer or a  Little Miss Mary Sunshine? People usually pick one or the other. Debbie and her self-defeating behavior; why try when nothing will change, there is nothing left for me in this life, I am of no use. Now Little Miss Mary Sunshine knows everything and it is making a brand new life, finding the right doctors, support groups, and will forge ahead! These are the personas we sometimes show others. In reality, we are sick and tired of being sick and tired. We just want the pain, the vertigo, the migraine…to end. A cure would be great! Until then, we take our medication. Sometimes we will go to extremes and have surgical procedures, with no guarantee of a positive outcome. And we read everything; news of every new pill, treatment, therapy, hoping we will stumble upon our way out of this illness. So who is the persona you show to the outside world, Debbie or Mary?

kim-post-1

Ok, you can be yourself again. I am am not very found of Debbie or Mary but in a pinch I will become one or the other. I’m never quite certain who I will pick, it depends on the circumstance. It was not fair of me to expect you  to choose either. But life is not always fair!

In closing, Wendy and I will continue on our individual health journeys with a little help from each other and you! Being able to tell our stories and allow people to see us is quite terrifying at times. But somehow our paths have led us to this place and we are so very glad it did. We have been given a gift! A place to share our lives and the ability to meet such wonderful and endearing readers of our posts.

I thank you, Wendy. I enjoyed being your guest today.

kim-post-2~Kim

Visit me at I Tripped Over a Stone.  itrippedoverastone.com

Mindfulness Monday – Love

hearts-black-and-white

 

What is the difference between “I like you”
and “I love you”?

Beautifully answered by Buddha:
“When you like a flower, you just pluck it.
But when you love a flower, you water it daily.”

 

“The most precious gift we can offer anyone is our attention.
When mindfulness embraces those we love,
they will bloom like flowers.”

~Thich Nhat Hanh

 

All artwork shown on Picnic with Ants created by W. Holcombe, unless otherwise specified.  All rights reserved.  Please don’t use without permission.

Mindfulness Monday – Change

ice-sicle

photo by S. Holcombe, rights reserved.

“If you change the way you look at things,
the things you look at change.”

~Wayne Dyer

 

“The only way to make sense out of change
is to plunge into it,
more with it,
and join the dance.”

~Alan Watts

Mindfulness Monday – Moments

butterfly-color

Butterfly by W. Holcombe.  all rights reserved

“In this moment, there is plenty of time.
In this moment, you are precisely as you should be.
In this moment, there is infinite possibility.”

~Victoria Moran

“The best way to capture moments is to pay attention.
This is how we cultivate mindfulness.
Mindfulness means being awake.
It means knowing what you are doing.”

~Jon Kabat-Zinn