Sunday, July 22, 2012

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

1 comment:

  1. And for s sickle cell to have been around for so long you would have thought it would have been better known. Evaluated a lot more. Honestly, deep down I know the real issue for the fait of sc is that if it's not affecting whites of America in. a big way then it's issue will not be set ablaze as other illnesses but thank goodness times are changing. The melting pot is steadily growing and genes/dna cannot be avoided. There is necessity for knowledge of this disease more than every now. Two of my children have sickle trait and the other two hemoglobin C trait so it's very important for them to be educated about it. Their future seeds depends on it. The more noise we make the
    better. I want better services for us. I want sickle cell clinics we can go to for treatments in every state/county. If cancer can have clinics then so can sickle sufferers too.

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