To Tell or Not to Tell

Many of us hide our health issues from family and friends. I didn't tell anyone I worked with until I called my boss from the hospital (with a horrible raspy voice) telling him, "I have sickle cell and I need a blood transfusion."

I was tired of hiding and sick as a dog.

The response of my boss and co-workers was surprising. Their compassion poured over me and I was so relieved. I could finally relax, get well, and come back to work after two weeks with my head held high.

This is our dilemma, to tell or not to tell.

There are laws that protect people with disabilities. Sickle cell is considered a disease that disables and all of these laws protect us too. The American with Disabilities Act gives (us) rights to work without fear of being fired, passed over for promotions, reduced pay or lack of training.

Check out the Disability Act and know your rights to live.....and tell.

Americans with Disabilities Act

- http://www.ada.gov/

- http://scinfo.org/world-wide-resources/americans-with-disabilities-act

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Your Chance To Speak

Information From: The American Pain Foundation

The Committee on Advancing Pain Research, Care, and Education is calling on the pain community to help committee members better understand what it is like to live with pain.

This is a critical time to share your story, whether you are an individual with pain, family member, caregiver or health care provider.

With the passage of the Pain Care Policy Act in 2010, Congress has commissioned the Institute of Medicine (IOM) to convene a committee to review pain research, care and education and explore ways to improve pain treatment in the United States.

Now is the time to tell your story and make your voice heard! Act now and share your individual experiences with pain and how it affects your life, including:

Barriers that have prevented you from receiving effective pain care,
Stigmas you have endured as someone struggling with pain, and
Experiences (positive and negative) you have had when seeking treatment

Go to link and tell your story. Help everyone by telling anyone!!!

Public Comment Form

Living

I was thinking about the new year and all the possibilities of opportunity. I reflected on my hopes for publishing my book (this year), and my desire to maintain good health and strength in order to fulfill new dreams.

All this reflecting left me with a sense of gratitude to just be alive to see this day.

To live with sickle cell disease is no easy task. Despite pain (daily), mood swings, and general life issues like rent, food and health care, living with sickle cell disease is hard.

Just getting up with a positive attitude is sometimes difficult. Hoping for any kind of future is sometimes senseless, and dreaming about achieving any goal can be futile. But people "living" with sickle cell disease MUST push on.

Some days are worse than others. The relief of pain medication doesn't soothe sorrow that comes from a life of suffering. Getting tired of being tired drains any hope we fight to hold on to.

But we must live on.

Living with sickle cell disease is our cross to bear, everybody has one. We choose to lift this cross fighting everyday with strength, positive thinking and perserverance or we don't. We give in or we give up this fight, it's our choice.

My personal choice is fight and win. Keep dreaming, keep believing, and keep getting up. Acknowledge the pain, get a remedy and move on. Cry if I want to cry, then wipe my tears and start over again. Pray about everything and believe there is a God who cares. Smile at the world and lend a hand to someone else hurting.

That's my answer to living with sickle cell disease. What's yours?

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2011 - Be Well - Stay Well

Have a blessed and healthy new year!!!!!

I'm Thankful

After the toughest year of my life, I’m thankful.
I could list the events for all to see, only to reveal the true depth of my loss and pain.
I could relive them; just to remind myself how far I’ve come.
But what I am is just thankful.
For loved ones young and old, wise and foolish, all enriching my life.
For that special one, deep inside my inner circle warming my soul.
For the knowledge that I exist, and it is good.
For the design creator of a perfect universe.
For His endless creations that confirm, we are not all there is.
For the burnt orange sunsets I see each day.
For waterfalls, flowing wondrous life giving water.
For seagull’s that fly over the beauty of the ocean
For this day my daily bread, I am thankful.

Happy Thanksgiving!!!!