Monday, December 28, 2015

2016 - New Year Same Mission

So many new possibilities for people with sickle cell disease. The medical community is tripping over itself to claim "The Cure", but until we ALL can live pain-free, I stay on the mission.

We have a new generation of people with sickle cell trait not knowing the facts about possible challenges they may face. We have to be transparent with the truth, however uncomfortable. Again, that's my job.

Here's some truth, New CDC Chronic Pain Treatment  Guidelines open for comment - The CDC has posted the Guideline for Prescribing Opioids for Chronic Pain, along with supporting documents on the Federal Register for a 30 day public comment period ending January 13, 2016.  The link to these documents and to submit comments is 


Friday, November 6, 2015

New Perspective- Living With Sickle Cell

This picture sums up my summer of 2015.

A trip to Utah to meet my newest granddaughter Kyndal, led to a health scare that I must take seriously. Utah, at 4400 feet elevation, is bad for me in the winter. Winter cold mixed with lower oxygen levels is not good. I know this. But it's June, my birthday month and I just HAD to see my baby be born supposedly on my birthday. Neither happened and everything went downhill quickly.



It's all better now, but it gave me a new perspective....I want to live. I MUST do EVERYTHING right, then put the rest in Gods hands. My granddaughter lives in Kansas now, elevation 1230 feet. So elevation problem solved.

I'm getting back to family, friends, and advocating for people with sickle cell disease......and staying the heck out of Utah!!!!!!!!! Finally!!!!!!!

Tuesday, April 28, 2015

Sickle Cell Does Not Win!

I've grown a lot since this high school picture and I've learned some hard life lessons. I conquered the world, best I could, with an unbeaten strength, the grace of God and the willingness to never give up.

Since that day a lot has changed. One thing that hasn't changed, is my resolve that Sickle Cell does not win. I resolve this every morning that I wake up in pain, and every night when I thank God for His strength. I've missed some things, but not my resolve to keep living, keep giving, and keep praising. 

As my journey continues into membership in AARP (Ameican Association of Retired People), I look forward. I ask myself, and God, What else can I do to educate, inform and speak for people with sickle cell? And I wait because everything I do now takes longer & my strength.

The answer is blood. People with sickle cell need blood, need donors, and need help with the gift of life that blood offers. I love blood donors, and marvel at their various reasons why they give blood. And I Love it! 

So, today I'm a blood donor advocate. I volunteer even when I'm in pain, because someone might receive blood that will save their life. Thank you Lord for my second wind.

Find out where you to donate blood and save 3 lives with 1 donation 

www.redcross.org

Tuesday, February 10, 2015

You Can Do Anything Despite Sickle Cell Disease

I have a new hero and his name is Billy Garrett, Jr., and he's proving that we can do whatever we put our minds to.

He proves this on DuPaul University basketball court every week. He's my hero because he is an overcomer and refuses to let Sickle Cell stop him from achieving his goals. Check out Billy's inspiring story and don't forget his name Billy Garrett, Jr.