Transitioning from Pediatrics to Adult Care has been one of the most challenging tasks of my life in dealing with my overall health, which also includes dealing with sickle cell. Developmentally, mentally, emotionally, and spiritually, it has without a doubt called for me to “grow up!” in more ways than we even have time to discuss. But, while we’re here, I’ll give you all the low down on my personal experiences recently. I’ll also provide small things we all can do one step at a time. These small things will ensure that the BIG task of becoming a responsible adult living with sickle cell that is mindful of their own strengths and weakness is checked off on our life’s (sometimes long & complicated) list of To-Do’s.
The first major concept I’ve had to learn & accept is that in the adult world, freedom & responsibility go hand in hand. And unfortunately, it’s a part of life us kiddos cannot escape. When I was a child, I wanted so badly to be independent and “on my own” to prove I could handle it all, and now that I’m here…ironically that’s what I got. I am. On. My. Own.
But the good news is that once we realize it is OUR responsibility to learn and know what is best for us, it gets clearer and easier for us to ensure we get the best treatment, and quality of life. At that point, freedom is expected and within arms’ reach.
Recently, I decided I was too uncomfortable in my safety net of life and needed to stop just flapping my wings while sitting, and actually learn how to FLY. So I set out to use my career as a Registered Nurse in Rehab and my motivation to continue my entrepreneurial vision with ROJOrganics to land a travel nurse contract in North Carolina. On this assignment lasting a minimum of 3 months, I’d have to learn how to begin to fully take control of my life, discover more of who I am, and what I like (or don’t). I hadn’t been hospitalized in almost a year, and not one pain crisis in approximately the same time. I didn’t think sickle cell would be an issue or concern for me looking at all the freedoms I would gain. But goodness, was I wrong.
I experienced my first crisis after less than a month of being away from friends, family, healthcare providers—everyone and thing to that I could see face to face in my safety net. I stayed home a few days and cried in a hot-water filled tub, in pain and out of fear, of what was next.
“What did I do to make this happen?”
“Do I need to go to the hospital?”
“Who can I call to get me there?”
“How much will my insurance be billed?”
“How much time will I need off from work?”
“Do I have enough pain medicine?”
“Will the ER treat me like I’m a drug addict?”
And the list goes on and on. Thankfully, the pain subsided in a couple days and things returned to normal.
I signed an extension on my contract after prayer and guidance. But then it happened, AGAIN. Sickle cell silently sneaked into my chest and ribs, showing its ugly face, and forcing me to deal—all while still recovering from the Flu! This time I had to have a different approach, as I spent over a week off from work, dealing with pain, lack of money & lack of providers (the closest sickle cell experts were an hour and half away in a neighboring city). This would take much more time, effort, and resources to solve. I had to realize what was a priority, and do my best to snatch back the control that sickle cell often threatens to take away from me, everyday.
And so finally, here’s my important list of To-Dos and resources that make putting on big girl panties and big boy britches possible and least painful in the pediatric to adult transition.
If you’re like me, then seeing and believing that independence not only can happen but also will happen when the desire brings forth effort is a great sigh of relief. I don’t have all the answers to this because I’m still living and learning. Independence looks differently for everyone due to experiences and circumstances, but these are great starting points.
Happy living, my transitioning friends!
- Jade J. Parker | Daughter of Christ | Sickle Cell Warrior & Advocate | Registered Nurse | Founder & CEO at ROJOrganics | Sister and Friend