EXPRESS YOURSELF

There are many moments throughout our lifetime that we are confronted with the desire to fully express how we feel. For the Black Male this is a daily paradox. As a male with SCD we get that double whammy because we feel dependency is a sign of weakness, yet we depend so much on family and friends to get us through our crisis.  Most of us grew up depending on others. As SCD became more prominent, the SCD community found a need to put in place pediatric clinics which would advocate care for us until we reach young adulthood. (17-18). Once we hit that threshold we look at our self as being grown and try to handle our illness in a compartmental area of our life. Some of us find that we are not able to handle the patchwork of our health plans, medical services and our daily routines.  In fact, it is difficult to find any adult programs that are focused on the transition from pediatric care to adult care. Sad but true, even if a program is available we have to take responsibility and get there.

In contrast, in the 1950's when I was an infant there was very little knowledge of Sickle Cell Anemia. There  were very few programs at all, if any.  Pain meds were sparingly used in crisis.  Transfusion therapy was non-existent. The patient and his mother were probably sent home from the doctor with some sort of iron shot and told to give aspirin every 4 hours, making the blood even thinner. You see, most of the time we were diagnosed as anemic, nothing beyond that. Generally, the only comfort if in crisis was constant rubbing of the joints involved, singing, television and comforting dreams.  What I've learned today is these attempts to minimize pain were the beginning of psycho-social behavioral modifications.  So let's give parenting the credit for being ahead of science. 


Despite the progress made towards pain management over the last 40 years, there is still a gaping hole between what is known to work and what is given to the patient with regards to pain management. The issues that complicate a more collaborative approach to pain management between patient and the medical community are, community concerns, emergency room responses, appropriate medications, accurate information, curricula development and fear and concerns of the patient. We need to express ourselves in raising awareness to pain management throughout the health care system and sub-systems each and every time we encounter them.

Was hospitalized for 3 weeks this past stay. I had pain that was not only Crisis related but also intensified by the need to have my shoulders, elbow, and to say the least my right knee replaced due to Avascular Necrosis. Ha! Ha! Which one is first? I have to look at our disease as a testament to our strength and Gods Blessing. How we feel allows us to live through these critical times even when we feel all is against us. We must communicate, (Social Media and the ability to get our word out through these mediums is a powerful tool.) Be Strong and Positive and let that sense of humor SHINE! Join my blog @ 1chanceonly-bigdaddy54.blogspot.com I thought this was a good poster... Take a look. https://www.facebook.com/photo.php?fbid=319934218076135&set=a.148627608540131.33233.135851093151116&type=1&ref=nf

CAMP CRESCENT MOON WORLD GAMES

This is my favorite time of the year. School is out and camps begin. I'm not talking about the Mitt Romney or the Donald Trump kids type camp. Not even scouting camps. I can remember going to Scouting Camp and almost coming home each year calling myself a failure because I never stayed the full amount of days due to crisis pain, too much excitement and chills from swimming in the lake. I would be devastated. Kids would tease me and say I was a "Weakling" then the rumors would start about the length of time I had to live. The bet was from 14-18 years old. Each year I celebrated their loss bet; however some children, including myself, have been scarred emotionally for many years.
   
You see in the 60's, camps had no idea of what was required to treat children with different diseases like SCD. Most Black Scouting Camps (in the south) had no doctors, counselors, teachers, etc. who were able to care for a camper who may have become ill. You had minimum staff and minimum equipment.
   
Going to SCD camps now, although under-funded, is a lifelong benefit in psycho-social behavior and coping skills which enable our children to live fuller lives. My children have been campers, volunteer counselors and administrators at Camp Crescent Moon (Sickle Cell Disease Foundation of California) since they were old enough to attend. Each year has been a labor of love for my family. Their appreciation for Sickle Cell Disease continues to grow.
   
Kids who attend camp look forward to meeting their peers who have SCD. They know they won't be bullied or teased because of their disease, unlike the humiliation I experienced 45 years ago.  They know the doctors, nurses, counselors, staff and all who volunteer without pay for that week are there because they love them and not because they sympathize with them.  Looking at each year's photos and hearing the wonderful stories warm my heart to no end and reinforces the importance of Sickle Cell Camps.  You see when I was growing up I had nothing to compare my Scouting days with. Suffice it to say, Black Scouting presented me the opportunity to grow into a young adult much like SCD camp does for the new generation of Sickle Cell Patients.


During the remainder of the summer or throughout the year you may have an opportunity to support your local state Sickle Cell Foundation.  Take the time to look at some of the photos or listen to testimonials and you will be convinced that this cause is worthy of your support.   http://1chanceonly-bigdaddy54.blogspot.com