I hope all of you had a happy holiday season. I certainly enjoyed mine. What I was most appreciative of was my family being home during the holidays. To see the smiles on the faces of my parents as their children's children rekindled relationships moved my spirit. Yet, I right this blog not to pass on my feelings all the time but to inform and generate topics of concern and discussion.
After the holidays I was hospitalized due to a fever of an unknown origin. This really knocked me on my back but it also allowed me to think about what could be done to make this blog more attractive to the reader. What I decided was to add more content.
I received an email from the Sickle Cell Disease Foundation of California (SCDFC) regarding a concert given by Celine Dion for Boston University Medical Center to benefit their Sickle Cell Anemia program. The benefit concert was held at Caesars Palace in Las Vegas. While delighted that someone of her celebrity status would give of their time to benefit a primarily African American disease, it made me wonder where are the Black celebrities on the issue of advocacy and finding a cure.
For many years those of us who suffer from Sickle Cell Anemia have wondered why our celebrities (athletes and entertainers) have refused to donate real dollars to programs and foundations across the country. This disassociation has left many to discount the funding sources in the African American community. So, does a Celine Dion benefit concert energize us to give or galvanize the tensions preventing real contributions from African Americans?
Thank you Celine for your concert and your advocacy. Hopefully this will begin much needed conversation in the Sickle Cell community.
Click on the link below to view an article and footage of the concert.
http://www.multivu.com/mnr/54153-celine-dion-play-without-pain-children-s-sickle-cell-benefit
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Tuesday, January 31, 2012
Sunday, December 18, 2011
A THANKFUL NOTE ...THIS YEAREND
I am so excited this Christmas. I am of reasonable health and most importantly I have all of my family home or planning to be home by Christmas day. I truly hope you are blessed with your family as I am.
I was hospitalized last week for Sickle Crisis. You see there are so many illnesses I have that I am just thankful for being here. When the nurses are changing shifts and giving bedside reports it is rather comical to me. They say; he has Sickle Cell Anemia, End Stage Renal Disease, Rheumatoid Arthritis, Congestive Heart Failure, Atrial Fibrillation, and Neuropathy. They look at each other as if to say, why is this man still alive. I look at them and say thanks to the caregivers I have beaten the odds given to a male with Sickle Cell Disease.
By the grace of God and many prayers, I have this steadfastness and appreciation for the many illnesses I have to deal with. I don't take any of them for granted. I thank my doctors for understanding me and my desire to beat all odds. Their ability and desire to treat me as a "special patient" allows me to feel the need to fight and never give up. But most importantly my family gives me the way forward with these diseases. You see, from the time I was a little boy asking my parents to rub my sore arms and legs until the time my precious wife told me don't think about leaving us I have promised to make the best of the moment.
Isn't it wonderful to awaken each day listening to my brother as he prays for me and my health. Isn't it wonderful to know how much you are loved by your family as they take care of me. Isn't it wonderful to go a dialysis center where the nursing staff cares about how you feel. I could mention many more unique and wonderful events in my life; however, the most important event is how you live your life in the present, not the past or the future.
So enjoy the holiday spirit. May you be healthy and in the right frame of mind to enjoy your family, your caregivers and friends. Appreciate all of the prayers for you from those you will never meet.
Happy Holidays!
I was hospitalized last week for Sickle Crisis. You see there are so many illnesses I have that I am just thankful for being here. When the nurses are changing shifts and giving bedside reports it is rather comical to me. They say; he has Sickle Cell Anemia, End Stage Renal Disease, Rheumatoid Arthritis, Congestive Heart Failure, Atrial Fibrillation, and Neuropathy. They look at each other as if to say, why is this man still alive. I look at them and say thanks to the caregivers I have beaten the odds given to a male with Sickle Cell Disease.
By the grace of God and many prayers, I have this steadfastness and appreciation for the many illnesses I have to deal with. I don't take any of them for granted. I thank my doctors for understanding me and my desire to beat all odds. Their ability and desire to treat me as a "special patient" allows me to feel the need to fight and never give up. But most importantly my family gives me the way forward with these diseases. You see, from the time I was a little boy asking my parents to rub my sore arms and legs until the time my precious wife told me don't think about leaving us I have promised to make the best of the moment.
Isn't it wonderful to awaken each day listening to my brother as he prays for me and my health. Isn't it wonderful to know how much you are loved by your family as they take care of me. Isn't it wonderful to go a dialysis center where the nursing staff cares about how you feel. I could mention many more unique and wonderful events in my life; however, the most important event is how you live your life in the present, not the past or the future.
So enjoy the holiday spirit. May you be healthy and in the right frame of mind to enjoy your family, your caregivers and friends. Appreciate all of the prayers for you from those you will never meet.
Happy Holidays!
Saturday, November 12, 2011
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.
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.
Tuesday, September 13, 2011
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
Friday, June 17, 2011
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.
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.
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