I wanted to take this first blog post and introduce myself, give you a bit of my backstory and let you inside my current world. I tend to be a bit of a rambler as some of you may know, even in my writings. I am hoping that as I continue to blog I sound less like a squirrel at a rave and more composed! My name is Jessica Granger, I’m a 36yr old Cystic Fibrosis patient from Maryland. Now many of you will go, what is Cystic Fibrosis? Well, the short version is it’s a genetic lung and digestive you are born with and there is currently no cure. We are prone to deadly lung infections, organ failure (not just our lungs) for numerous reasons, extensive digestive issues and more. Sometimes the issues that come along with it are worse than actually having CF itself! I personally have fatty liver disease, Osteopenia (the beginning stages of Osteoporosis), Degenerative Disc Disease, DIOS (Distal Intestinal Obstructive Syndrome,Hypoglycemia (I’m also at risk for developing CF related diabetes), Acute Nerve Tension, Pancreatic Insufficiency, Weight Gain issues (CF patients don’t absorb fat/calories/vitamins/minerals properly). Each CF patient is has many similarities but can also be very different because CF is a complex disease with over 1800 mutations. I was diagnosed in 1982 at the age of 3 after a bowl prolapse sent me to Johns Hopkins. Back then they didn’t know a lot about CF and it was considered a childhood disease and most didn’t see past elementary school. I wasn’t supposed to see 10, beat that, then it was 14. However, because I am a stubborn ass I have beaten all those odds and will continue to fight to live as long as I can. At the vulnerable age of 12 after many years of bullying my world was flipped upside down because I had to get a feeding tube. It was a do or die moment in my life. I fought tooth and nail because I didn’t need one more thing for people to talk about. It took a few more years for my confidence to grow in but I can now say after 27 years of having it I can’t regret it one bit. That thing has saved my life more times than I care to count. Later on in my twenties, I went through a phase where I quit using it for a bit because I felt like it wasn’t fulfilling its purpose and doing more harm than good. I plan on doing a video blog about my tube and talking about everything I have been through.
I have spent damn near my entire life since childhood talking about CF, educating everyone I can, fundraising and doing research studies to find a cure. As I got older and social media came about helping other CF patients, giving advice, running a support group and being an advocate for the entire community wherever I can became my other passion. I have a very successful fundraising team of family/friends that walks the Great Strides Walk in Baltimore, MD. We started off as a very small team when I was around 5/6yrs old in Westminster, just my mom, me and my aunt. My fundraisers keep getting bigger and bigger and more ideas keep coming to mind. The only way left to go is up from here. I will not slow down, I will not stop, I will continue to speak at every opportunity I am given, I will give a voice to those who are not as outspoken as myself and I will continue to fight until a cure is found.
Now, lets fast forward a bit because there are a ton of in between stories that I can save for other blogs. Almost one year ago I married the man of my dreams, David! He first came into my life in 2009 through his cousin. We spent a bit of time together during my tattoo sessions but lost connection. Oh yeah, he is a phenomenal artist, tattoo and beyond! Five years ago in 2014 I got a friend request on Facebook, to be honest I had no idea who it was, it had been that long. After about a week he finally messaged me and was like HEY IT’S YOUR ARTIST! Truth is I was coming out of the most toxic relationship of my life at that point and I was craving change while still being messed up in the head. He had randomly asked me what I was doing for V-Day because my side piece needed finished. We both didn’t have plans for Valentines Day and I took it as the sign I needed to start a new life, so I became his Victim Valentine. I went over to his house for tattoos, movies and ice cream and never left. That is literally what happened. In 2016 literally overnight I became the one thing I had craved to be in life, a MOM! After years of being separated from his daughter, having no idea where she was or who she was with, we got a tip and found her. His sister and I took immediate action to remove her from that situation. We have had her ever since and she is the best thing to ever happen in my life next to David. That tiny ball of energy shook my world to the core and filled a hole in my heart that had been longing for love. She is the most kind, loving, charismatic, polite, child I have every had the pleasure of knowing and I am proud to call her my daughter. Rhiannon definitely keeps me busy, especially because she does competition cheer. I will give that tiny human of mine every opportunity in life and she is making up for lost time with her dad for sure. He totally lights up any time she speaks the word daddy. So many years of missed time, life events, first and just not know where she was rocked Davids emotions all the time. I witnessed how much it hurt him from the beginning and I see the change in him since she is back in his life.
Life has changed drastically in the last 5 years. I went from being a rebellious party animal (more on that in other blogs) to a Wife, Mom (Cheer mom), Fur mama (we have 3 dogs), Business owner, Beachbody Coach, and the list continues to grow. I am a jack of all trades master of none as my mom says. Slowing down has never been my thing, but these days balancing normal life with a chronic illness is not as easy as it was in my teens/20’s. Bouncing back isn’t as easy at all!!! See, Cystic Fibrosis doesn’t care that you have kids, that you are trying to help your husband build a business, about any of you plans at all really. Thank god my support system of family and friends is amazing. I wouldn’t be able to get through this life without them. And I want to give a special shout out to my tiny human who is 11 going on 55! She has been the most self sufficient kid I have ever come across at that age. On days when I can’t even get out of bed she is right there asking me what I need help with, getting herself ready for school and doing absolutely anything I ask. Truly, I can’t do it without her or my husband each and every day! It has taken many years of being a stubborn ass independent I can do it all woman to learn that is okay to say no and it is okay to ask for help! Let me say that again for any CF patient reading this right now that thinks they can do it all, I have been you, I am you, I still have days where I’m half dead like I GOT THIS. STOP, it is okay to ask for help and REST!
Well, I think I have covered a small glimpse into what my world is like for now. I am looking forward to sharing my life experiences with you as a patient, as a rebellious party animal, sharing more into what a day is like for me as far as treatments go and just my all around regular life. I hope you follow along this journey and help me grow it, because there are people out there in this world that need to know as a CF patient you can have a “normal life” with a chronic illness even though some days it feels like you won’t make it til tomorrow. Make the plans, live your life, don’t live in a bubble. Life is an adventure, even this chronic hot mess one we live daily.
“I have Cystic Fibrosis but it doesn’t have me!”