Our soldier needs prayer!

I must apologize for not posting to my blog in almost two months.  Believe me, I have wanted to but have been unable to do so because my vision is poor as well as many hospitalizations.  I will get back to this later.  What I want to talk about at this time is we have a soldier who really needs prayer.  Her name is Phyllis Thomas, who founded Sickle Cell Soldier Network.

A few years ago I met Phyllis at the American Red Cross luncheon where I was a guest speaker.  Although we didn't spend much time getting acquainted, we did exchange numbers and have been able to communicate on Facebook and Twitter.  She had this smile of destiny that focused on alternative methods to advocate for sickle cell awareness and a cure for sickle cell disease.  She founded "The Soldier Network" to fulfill these missions and has flown from California to Washington D.C. and in between building this network. Phyllis, as all Sickle Cell patients must do, has retreated to her inner sanctum in order to build strength to continue her journey.  She has been hospitalized for several months and needs our prayers.  So I ask all of you to keep her in your prayers.

Over the past several months I have been hospitalized due to Sickle Cell Crisis and End Stage Renal Disease complications with Peritoneal Dialysis.  My catheter had been repositioned twice due to an inability to drain properly.  This inability forced me to make decisions with regard to the ultimate goal of home dialysis. My hands were tied and after placement of a fistula in my arm to continue my dialysis treatment I had no choice other than hemo dialysis.  While hospitalized, my blood pressure dropped to dangerous lows and my heart rate was extremely elevated, which required me going into ICU.   With much prayer from family, friends and others my stay in ICU was a short one

Upon my release three weeks later, I have been going to in center dialysis. My strength has improved daily.  My hemoglobin, after several transfusions (while in the hospital) has improved because of the Epogen shots given to me weekly. Although I have not yet been able to walk long distances, my stability is better.  I am also able to shower and dress myself without much assistance, which I had not been able to do since the end of August.  By the grace of God I feel I am on the right track towards returning to my old self. 

I want to thank my wife Patrice for typing this blog.  Many prayers are going up for Phyllis.

National Sickle Cell Month

I have attached a quiz as a first installment of a series of discussions recognizing National Sickle Cell Awareness Month.  From an advocates point of view we should all be highlighting this disease in the communities we are reaching out to. 

Over the next several blogs, I will have a series of discussions highlighting this occasion.  First, I will  write about the teleconference I participated in September 2 with Dr. Susan Shurin, Acting Director, National Heart, Lung and Blood Institute. 

For now enjoy the quiz.  

Sickle Cell Disease Quiz

Sickle Cell Disease is one of the most common genetic diseases in the United States. Sickle cell disease affects about 70,000 to 100,000 Americans.

Test Your Knowledge...

1. True or False: Only African Americans get sickle cell disease.
a) True
b) False

2. True or False: It's still important to know whether or not you have sickle cell trait even if you don't have any symptoms.
a) True
b) False

3. True or False: People with sickle cell disease cannot get malaria.
a) True
b) False

4. True or False: Sickle Cell Disease affects different people in different ways, but almost always includes pain.
a) True
b) False

5. True or False: A woman with sickle cell disease cannot have a healthy pregnancy.
a) True
b) False

6. True or False: There are several different types of sickle cell disease.
a) True
b) False

7. True or False: There is no cure for sickle cell disease.
a) True
b) False

8. True or False: People with sickle cell disease need to have their vision checked more often that people who do not have sickle cell disease.
a) True
b) False

9. True or False: There are things a person with sickle cell disease can do to avoid some of the complications.
a) True
b) False

10. True or False: People with sickle cell disease should not get vaccinations.
a) True
b) False

Related Pages

• Blood Disorders
• Newborn Screening
• Genomics
• Minority Health
• CDC’s National Center on Birth Defects and Developmental Disabilities

Always Something to Keep You Focused

There is a lot of truth to the perception that those with Sickle Cell Disease do a lot of frowning and always tend to look mad.  I find that I am constantly frowning.  My wife always reminds me to, "Smile...God Loves You".  In that same thought, she reminds me of how forturnate I  am to have my parents living  Over the 30 years we have been married she has witnessed them and their efforts to keep me not only healthy physically, mentally and emotionally but to provide as much support as possible.   Those of us with SCD must learn to appreciate that we have wonderful friends that keep us encouraged but they pale to keep pace with family.

I am fortunate to have a loving wife of 30 years and 3 wonderful children.  What's not to smile about?  Well, it doesn't take long for you to figure out how self centered I am or could be (I continue to work on this fault).  As soon as something goes wrong that involves my health, which may be daily, I get into fighters mode and the frown returns.  As a retort to the sayings;   "Think Positive and It Will Happen...or Smile and You Will Feel Good!" I told someone, "I like to see where my bullets are coming from."

How do we become less agressive?  Is it Pain Management?  How do we handle the daily and contiuous frustrations pain brings to the table or the frustation that a decision you made and prayed about did not go as planned?  You see we get up each day with the expectation that something will present to us a challenge as it relates to our health.   Many of us who are over 50 have outlived the average mortality reported by data to the NIH (National Institutes of Health).  We all can thank God for his Word and Protection.  We can thank our friends who once whispered behind our backs that we were weak and would not be around for long.  The thought of those voices who whispered behind my back keeps me going each day.  I wonder if this is an underlying reason of why I carry this frown on my face?

The other day on my way to a doctors appointment we were listening to the radio and a song was being played.  It was Kirk Franklin called "I Smile".  "Today is a new day"....Sho' would hate for you to give up now... I Smile".  "Smile for me can you just smile for me...You look so much better when you smile."  Hardships, difficulties...We know it's hard right now....You look so much better.  Have Joy!"

Thank God for a wonderful Family....I Smile!  Happy Fathers Day to all Dads.

Sickle Cell Anemia...The Male Perspective: Elite 8

Sickle Cell Anemia...The Male Perspective: Elite 8

Elite 8

It's that time of the year that basketball dominates the TV watchers consciousness with a lot of Championships.  I think we all can agree that those with SCD celebrate achievement not through a National Title but through accomplishments associated with daily living and quality of life.  I look at those obstacles confronting me similar to those confronting each college team on their way towards achieving the ultimate prize....The National Title.  Let's Explore.

Often those with SCD view themselves from a narrow prism of dependency and victim hood. No matter how hard we try to gather words and wisdom to make our lives better we can't seem to lift ourselves out of our ruts.  Living with SCD dictates that we must constantly shake the "woe is me" syndrome whether self or environmentally inflicted.  Therefore, I submit that we need to take a different point of view.  Like the National Championships each year we start over again training and fighting to win a championship called "Quality of Life".  Our goal each year should be to shatter through our own obstacles; "Elite 8", "Final 4" and the "Championship" as a result of our training and commitment.   Our quality of life crowns us as champions and carries us into the new year.

If we focus on not getting to far ahead of ourselves we can take note of what a beautiful life we SC Warriors enjoy. I know the pain is unbearable sometimes and visiting the Emergency Rooms and physicians can drive us and our caregivers mad, but thorugh it all we make it to the sweet 16 and on to the Elite 8.

You may wonder what is the Elite 8? It's a basketball metaphor describing the best 8 teams in America who battle each other to make it to the Final 4. While I am not trying to compare anyone with others and God forbid, I am not saying those Warriors who left the battle field early (RIP), were weaker than the next person, what I am talking about is how do we encourage ourselves..., and how do we recognize that through God's "grace and mercy" we walk through this "storm with our heads held high"?  I am referring to ..."tooting your own horn!" Saying to yourself,... "I am a Winner".

Now your list may be different from mine but when I think about it an example of my Elite 8 may be I made it through; 1. 6 hospital stays, 2. chronic mini crisis that I treated with pain therapy, 3. end stage renal failure, 4. staph infections, 5. vitreous haemorrhages, 6. rheumatoid arthritis, 7. dialysis, and 8. my self doubt. That's my list of things I am dealing with today along with some others I forgot to mention that did not make my elite 8 (other acute or chronic complications).

So let's look for those shining moments that bring total enlightenment and joy to ourselves and others. Our testimony is powerful. Our joy is contagious. Our stamina is overflowing. So just as we will see those college basketball players stepping up their game to win the Championship we too can step up our game and win everything this disease throws at us.....because we truly are WINNERS!!!