Quality over quantity has been my favorite excuse to give to those who question my health habits. You see I have a genetic disease called Cystic Fibrosis, and for so long I have been outrunning my responsibility to maintain it. Here is my journey I took to choosing me.
Birth-When it was easy
February 21, 1994 was a big day for my mom and sister. It just happens to be the start to my story. I’ll save all the minor details….maybe one day I will write a book or…something.
Fun fact, my sister was born two weeks late. My sisters dramatic entrance was one my mom did not want to relive again… so of course my mom was bound and determined to have me on her due date… which now seems super ironic or a coincidence, or an act of fate; or unlucky…take your pick, because only hours after making my entrance into the world was I diagnosed with CF.
The hand I was dealt may seem stacked against me at times, but I will always be thankful that my parents raised me to live in the mind set that I was no different then anyone else. I was held to the same accountability as my siblings, I did most things that other kids did, there wasn’t much I couldn’t do. Despite having a few extra steps to my day I never really felt different, CF was truly my “normal” and that was that.
Until the big bad tween age/teenage years.
The Bad and the Ugly
No one says it’s easy getting older…but no one says just how difficult it is either. The hormones and they everyday “dramas”, the new responsibilities, the wants and needs; add a genetic disease on top it all and Roam has fallen. I quickly realized with the transfer of responsibility from my mom to me, that she had to be magic to keep our family rolling, never missing a beat. I really can not put into words just what she has done for me.
Around 8th grade my CF empire was falling. I was lashing out and angry, mostly because I had zero control of my emotions…stupid puberty. I was refusing to do treatments, I was lying about doing treatments. I was realizing that I was not as “normal” as I was made to feel. I lost the balance my mom worked so tirelessly to create. When you are in an age transition, school transition, and trying to live the “normal” life, things come crashing down, and there I stood looking at the ruins.
I’m an all or nothing person. I have to start at the beginning…the beginning of the day, week , month, year and the first time I screw up, boom, the steel walls come shutting down, I hate to fail. If I mess up, feel I messed up, I punish myself worse then anything my parents, or “elder” could throw my way. The way I outwardly show my failure, however, comes across strongly as I don’t give two flying flips. Not only could I not articulate what I needed, I was to proud to ask for help.
Roam Has Fallen
I do this “thing” where I have these light bulb moments. Where life seems to make perfect since, and then…I’m running the opposite direction, like hey life let’s see how long I can run form you ready, set, GO!
When I packed up and followed my parents to NC, I was never so excited to go to the adult clinic…I mean more or less get out of pends clinic. Everyone told me how magical it was going to be. I would get a whole new team, a brand new start. In my mind it was going to be great! Here comes that all or nothing personality problem. I made my appointment the day before my 21st birthday. I made a list of meds I was taking, meds I was willing to take, and meds I would refuse to take. I had rehearsed what I wanted to say and I was ready…but what I imagined would happen and what did happen had me packing up my dreams and moving on.
The clinic was great don’t get me wrong it possessed a few qualities I was hoping it would, such as, a team that listened. They didn’t make me feel crazy when I said something wasn’t for me. If I wasn’t interested in doing something…they didn’t question it they just figured out an alternate solution. However, Clinic was still held in a pediatric setting, and being told that they didn’t have the recourses to treat adult CF patients was kind of earth shattering. Not to mention half of my ‘I need from you list’ was blown apart when I was found out that four doctors cycled through the clinic and the possibility of having the same Dr. two visits in a row was slim to none. Now don’t get me wrong I know that’s how some offices work, but living three plus hours from them, I really wanted to create a relationship like I had with my peids team.
If I am being completely honest it wasn’t even the clinic that really killed my perfect dream, it was fighting the CF Pharmacy. Not that these aren’t problems that everyone faces, but it just happened to be my Achilles heal. First the dream team failed, then I was swept up in my first island season, and before I knew it a year had come and gone.
We made it, the end is near! Now that I have bored you and taken about 8 thousand left hand turns with out signaling, and leave you to sort through the grammatical errors of this blog, we have reached exactly how I decided to grow up and pick me.
Season two 2016 is coming to an end, and I find myself feeling particularly icky. A month it take me to kick what I can only hope was a virus. You may ask well Emily why did you not just go to the Dr. Well pride at first , but when I realized where this bug could land me…I started thinking and somehow talked myself into getting an appointment inland. My guard was coming down, I was having another light bulb moment. My pride was not worth my health. Ding, ding we have a winner. I was in the process of making an appointment with clinic one, but during the scheduling process the hoops I had to just through just made those walls go right back up. I convinced myself that I was right why I listen to what people say I will never know, if you don’t live with CF don’t tell me how to live, blah, blah, blah. Months later I try again with my mom clinic choice…again here come those hoops, and for a minute I gave up. I was tired and I was done. The hardest part of living with a disease should not be making an appointment. I called it quits, but my parents had other plans. My dad beg, pleaded, and demanded, where as my mom let me know how she really felt. That of course led to three days of not speaking to each other, that also left three days to sit and fester, but also gave me time to realize that doing things in spite of them was only hurting me. I am an adult! And as frustrating as it is some times no one will ever fully understand the situation I am in and how I process… not even my mom. It was in my bed, snuggled up with my baby love bug, that I realized that I needed to start living for me. Part of being an adult is making a decision to walk back into clinic, and just be the best me I can be. It sounds so cliché, but it’s true. I have the power and it’s not for anyone to take. I can not like a situation, but that doesn’t mean I can run from it.
So here I am a week away from my first clinic appointment in almost two years and although I am so nervous, I know that I can do this. I have the power in my life and I need to do this for me. I have so much I want to do in life that I refuse to let CF rob me of a life.
Be bigger than your fears.