Life with Sickle Cell: Sickle Support

Wow, thank you all for reading, commenting, and DONATING!  OMG, ya’ll exceed the goal of $200 in donations to the Seattle Sickle Cell Task Force.  I have the BEST followers of my blog, thank you!  If you have not donated, it's not too late you still have time, the link is on my FB page or just reach out to your local Sickle Cell Chapter.  While we appreciate the money that jingles, we appreciate the money that folds!  

Also, if you cannot donate do not feel bad, please share my story or share a Sickle Cell post.  Awareness is the MOST IMPORTANT thing!  

You can share this on your social media page, it's that simple! 

It shouldn't be on the shoulders of people who have the disease to mobilize the message, it should be a community effort to promote awareness, education and  encourage GENETIC TESTING! 

EVERYONE , PLEASE GET GENETIC TESTING

EVERYONE , PLEASE GET GENETIC TESTING
EVERYONE , PLEASE GET GENETIC TESTING
EVERYONE , PLEASE GET GENETIC TESTING
EVERYONE , PLEASE GET GENETIC TESTING
EVERYONE , PLEASE GET GENETIC TESTING

Not just for Sickle Cell but for all health ailments!  Diabetes, cancer, aneurysms, hypertension, etc.  The more you know about your genetic make up, the more you can get in front of any health issues in the future.  

Moving along...

The dark ages were coming to an end—childhood Sickle Cell was behind me, but not to say adult Sickle Cell was any better—difference was the circumstances and pressure changed.  After high school, I thought things would normalize in my family dynamics and they did for the most part until my mom died.   Hold up, I won’t say that so gingerly, that she just died, like my grandmother (her mother) she too was murdered, jarring isn't it?  Death is difficult period, but murder is flat out incomprehensible.   While she and I did not have the best relationship, as I was getting older, things were starting to come together for me and her and then she was drastically taken from us.   Surprisingly, I did not suffer any stressful sickle cell trauma because soon after I lost my mother, I lost my grandfather, my caretaker until the end.  My post traumatic stress was in overtime. 

By 2003 I had had enough of living in Washington.  I felt like I was on a hamster wheel of life—going nowhere, so I decided to move to Maryland.  Yes, all the way across country where I didn’t have one single drop of family—just friends.  My BEAUTIFUL Sisters of Zeta Phi Beta Sorority, Inc.—more specifically, Omicron Gamma (OG)! 

God intervened in my life with planting the thought of moving to Maryland, because moving to Maryland was THE BEST THING THAT HAPPENED IN MY LIFE.  I became a new person in Maryland, one that was not identified by my past or how I grew up, but now a person who is more centered, mature and not afraid of anything anymore.  

In Maryland I was surrounded by friends who actually knew what sickle cell is and genuinely more worried about the disease than I was.  Friends that made sure I was eating more vegetables and drinking water (Raina), being my emergency contact (Sonja), going and sitting with me in the urgent care (Tennille), no matter how long it would take because they knew all about sickle cell and understood its crippling effects on a person.  Friends who would IMMEDIATELY look at me and see that my eyes were yellow and go buy me a bottle of iron pills without prompting them (Charles). No more having someone wait in the car.  No more sucking up the pain out of not wanting to inconvenience anyone (although I still felt that guilt).  No more not caring about my own health because seemingly everyone around me back home didn't care, and it wasn't that they didn't care, they didn't understand.   In Maryland, I now had a COMMUNITY of love, care and utmost understanding. The difference being EDUCATION!  There are more African Americans on the east coast, therefore,  there is more EDUCATION surrounding the disease.  

Never in a lifetime could I  measure the amount of love I have for my friends and sorority sisters, there wouldn't be enough words in all the books in all of the world to express my love for them.  

I used to feel so ashamed to talk about Sickle Cell, now I feel empowered because I am surrounded by people who not only knew about it, but most importantly women who ALSO HAVE THE DISEASE!  JESUS!!  

Finally, people who aren’t looking at me like I’m crazy when I say I’m tired or don’t feel good although I may look perfectly fine.  Women who I can open up to and have a circle of trust and support without having to OVER explain what is going on when I talk about my low hemoglobin or my neutrophils, or how they’ve had to get numerous blood transfusions.  My God, I would NEVER WISH THIS DISEASE ON ANYONE, but the comfort of feeling free of shame when I say that I’ve had a blood transfusion without a clueless peer saying to me,  “Blood transfusion?? that’s how you get AIDS!”  I now have SUPPORT!  I now have a new love that I share with two special women, my sorors,  Mefia and Miah, my Sickle Cell Crew.   

Sickle Cell Walk 2014

Also, to find a love, a man who not only knew about Sickle Cell, but also had the trait him self.  Pause.  Wait!  What? Yep!  I dated a man on and off for 10 years who had the trait, so yep you guessed it, no children for us.  So here I am finally finding people who understand my disease, even a love who understands, but he has the trait therefore in the back of my mind our love affair would always be “limited”.  I won’t go into the ins/outs of our relationship—those who know already know, but to love a man whom you cannot have children with puts a certain type of strain/stress on the mind and heart of a woman of childbearing age. I can hear all of you say,  "there is advanced medicine, surrogate options, etc." but at the time those ideas were too far-fetched and now its too late. 

While in Maryland, I was blessed to have a soror Jasse who I’ve deemed as my medium between Jesus and me.  We joke about it, but I do believe in my heart that God placed this woman in my life for a reason, and I do believe through her relationship with God he used her to do His work.  In 2010, I was let go from my public relations job and while at an event on Saturday, January 16^th, 2010 at approximately 8pm, Jasse turned to me and said, “Sista, Jesus just spoke to me! We’re hiring at NIH!”  

Jasse works at National Institutes of Health (NIH), and for those of you who are unfamiliar, NIH is the primary agency for the United States responsible for ALL biomedical and public health research.  In other words, the GRAND PUBA OF MEDICINE!  

Guess what NIH has?  They have the National Heart Lung and BLOOD institute!  Guess what that means…THEY HAVE A SICKLE CELL CLINIC!!!!  

Within this institute, an entire clinic of nurses, doctors, social workers and advocates DEDICATED to the research, understanding and advancement of Sickle Cell, and praises to God, and thanks to Jasse, I was offered a job to work at NIH! And not only work, but assigned to work under THE BEST PERSON EVER, Dr. Gahl.  The boss who on any given day if I walked into the office, he'd take one look at me and tell me to go down to the Sickle Cell clinic.  Hell, not only did he tell me to go to the sickle cell clinic, at the end of his day, he would come check on me!  Dr. Gahl would talk to the attending nurse or doctor and then rely the information to me so that I could fully understand. I cannot explain how many jobs I've had where I had to SUPPRESS and keep secret my disease and days of sickness!!  But guess what, I was already prepared as a teen to MENTALLY FIGHT through Sickle Cell.  BUT NOT ANYMORE!  God assigned a Clinical Director  a GENETICS DOCTOR to me who KNEW with one look at me anytime I needed to go get fluids, be admitted or even take a day of rest.  

If you don’t believe God has perfect order, let this be the example of his work! From Spokane, WA no one EVER told me about NIH and I certainly NEVER knew there were clinics and research dedicated to MY DISEASE!  Look at how God has timing and uses people in our lives!  

Next time on Life with Sickle Cell: The Conclusion...Sickle Cell Scares me back to Seattle