A Transition to-do list

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.
 

• Write a Travel Letter - get with your provider to have a document prepared in the possibility you’ll experience another crisis.  It’ll include things like normal meds you take while in crisis, and your provider’s contact info. This will give you supporting evidence of how to treat you when it’s difficult to relay the message yourself while in crisis. There’s no worse feeling than going to experts in the ER for help, and due to lack of confidence or exposure to sickle cell, they cannot or will not help the way necessary.
• Grab a Sickle Cell Home Care Kit - heating pad/hot packs, gallons of water, prescription medications, etc.  Gather your supplies that help you attack a crisis at home as soon as possible, and you may be able to avoid the steps that come later.
• Know Your Baseline - Discuss and learn the lab levels that are normal for you when attending routine checkups.  Should they ever differ, you can help troubleshoot and find solutions to get you back to ground level when a sickle cell crisis can dig a hole and lead to a change in those numbers.
• Create a Small Emergency Fund – Start small, and build from there. Money for transportation, favorite snacks/comforting items, prescriptions when leaving the hospital or being anywhere else are a few of the costs associated in dealing with sickle cell, and it can definitely come in handy.
• Take Care of Yourself! - Taking your medicine—everyday! Learn to say “No!” to unnecessary stress from people and yourself.  Incorporate fresh plant based foods into a balanced diet, and hobbies that can yield mild-moderate physical activity can help you to KEEP feeling good.
• Seek Community Support - community based organizations (CBOs) like Martin Center Sickle Cell Initiative of Indianapolis that can give a safe place to deal with sickle cell, providing food pantry, scholarship/bill pay assistance, transportation assistance, and support group to discuss the realness of sickle cell.  Clinical support provided in during and outside of appointments at hematology clinics helps to gain trust and establish patient/provider relationships. Friends, family, loved ones, church groups, etc. also help keep you anchored, making you feel like you belong and reassurance that although you are growing up, you’re definitely not alone in the process.
• Lastly but not least, HAVE FAITH! - In your capabilities and willingness to push through. There’s no need to feel ashamed, embarrassed, overly burdened. Because we’re the ones specially chosen to be strong enough to deal with and fight this disease. After all, WE’RE SICKLE CELL WARRIORS!

 
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