Thank You CF

An open thank you letter to cystic fibrosis (CF)…

Thank you, CF, for showing me the real strength of a human being and thank you for giving me the strength to fight you. Without you, I would not believe how strong our minds are and how strong our bodies can be. I would not know that a positive mind can influence our body’s health so much. I wouldn’t believe that us humans can go through a lot of sh%# without giving up.

Thank you for allowing me to realize the difference between a small and a big problem, allowing me to know that I shouldn’t fret over the small stuff. I need to focus on what’s important. You’ve helped me realize that I can think independently and that I don’t need to rely on someone else for my own happiness.

Thank you for sending me to an amazing team of doctors who know how to help me. You’ve showed me how to trust these doctors and realize that they know how to go up against you, that their care plans work.

Thank you for the understanding of all the medical terminology that is constantly thrown around me. This has helped me become more knowledgeable about my medications and the care plans, about the treatments I need to fight back against you.

Thank you for making me realize who in my life are my true friends, those friends who put up with the inconveniences you try to create, who put up will all the gross things that come with having CF. You’ve also helped me to cherish those friends who stick around.

Thank you for introducing me to some amazing people. I have met many people through the CF community and social media, people who understand and can directly relate to a lot of the struggles I go through. I understand the good in people and communities of people who come together for causes greater than themselves.

Thank you for showing me that I need to work for the things I want. Having CF makes me work for my health and understand if I don’t, I will get sick. That hard work has spilled over into career and has made me a hard worker in all that I do in life.

CF, thank you for allowing me to realize that there is always joy to be found, despite suffering, and that without that joy, my life would be so different. You’ve given me a story to share, allowing me to spread this joy to others through my story. Because of the joy and my ability to focus on the good, I have fun and I don’t think about you as much as I otherwise would. I’ve learned to take care of you first and second, to push you away, to move on past you, CF.

Thanks for my parent’s strength to have a child with CF, for giving them the energy to walk along me in my fight against you. My parents have been my biggest supporters in conquering you, CF, and not letting you take me out of this world.

And finally, CF, thank you for allowing me not to be afraid of death, realizing that it happens to everyone, and no one knows when it will come. For showing me how precious life truly is, that tomorrow is never promised so I must live in this day, this hour and even in this moment and never take one person or one second for granted.

Cystic fibrosis is hard, is complicated, is painful, is discouraging, and is time-consuming. But CF is life changing. CF is a part of who I am. Would I still be Jackie without it? The answer to that question is “no.” My life would be completely different. I am who I am because of CF and despite CF.  Thank you for helping to bring out my best self, to make me who I am today.

Love,

Jackie

New Hip, Who Dis?!

Facetune_23-04-2018-21-00-55
New hip as seen via x-ray

A week ago yesterday I had my total hip replacement. And everything has gone so well. *knock on wood* I’m used to some complication happening so it is definitely a breath of fresh air for everything to go as planned. And this hip is WAY better than the temporary hip (called a spacer) that I had for 6 weeks before my surgery. The spacer was very uncomfortable and often painful. I basically laid around for 6 weeks, relaxed and did a little PT. I’m a little sore from my hip replacement but overall, I don’t have pain. I’ve been working hard on physical therapy exercises & walking. Starting yesterday my dad & I will be walking up and down the driveway everyday. Walking is the best exercise because it strengthens my muscles and increases my endurance. I’m using a walker because it allows me not to walk with a limp and I don’t want to get into a bad habit of walking with a limp. I’ve been having issues with my hip since last March. And they got really bad in October, which is when we decided I, for sure, needed a hip replacement. I was introduced to Dr. Hawken and immediately felt like he was the right guy for the job. He has done an incredible job and is an amazing doctor. So THANK YOU Dr. Hawken!!

08DC58A3-0E37-4ADB-881B-8E0B634E3961.JPEG
Practicing stairs at the hospital

I recently officially resigned from Lidl. In the last 2 years I only worked for 5 months, 8-10 hours a week. Then I had the issues with my hip and decided I needed more time off. So, I technically haven’t really worked in 2 years but was technically employed and on payroll. I’ve been doing a lot of thinking recently about what I want to do with my life and I’m not sure if finance is what I want to do anymore. So, I didn’t want to string Lidl along if I wasn’t sure that I wanted to come back and they also wanted a definitive answer of when I would come back, which I did not have. We ended on VERY good terms and I definitely plan to keep in touch with my team. That company is AMAZING and has been so good to me. So if there is a Lidl store near you, SHOP THERE. They deserve to succeed here in the United States. [I recommend their wine, chocolate & cheese.] I also know for sure I want to live a little with my new lungs. I really haven’t been able to because of all the complications I have had. My summer is full of a lot of travel & I am so excited!

4B20DE01-1ED4-42F5-A98E-4E548E05D77A
Walking the driveway with my dad

If I could do anything with my life it would be motivational speaking and starting a non-profit (if you have any experience in this, I’d love some help). I also plan to volunteer more with the CF Foundation and Donate Life/United Network for Organ Sharing.

Speaking of the CF Foundation, I was selected as an honoree for “DC’s Finest.” “The Cystic Fibrosis (CF) Foundation honors a select group of men and women from cities or regions across the country that are committed to professional growth through a guided fundraising and awareness campaign. These honorees exemplify strong leadership qualities, are active in their community and have excelled in their chosen professions. The honorees will enjoy many benefits throughout the campaign, primarily the knowledge that they are helping to better the lives of children and adults living with cystic fibrosis.” I have pledged to raise at least $2,500 dollars by August 22. If you’d like to contribute to my Finest Campaign please visit: https://metrodc.finestcff.org/jackieprice.

 It is also CF Awareness month. So if you head on over to my Instagram page, I am sharing facts about CF every day. 🙂

My Mom is Simply Amazing

Mom1November is National Caregivers Month so I thought this was the right time to post about a very special person, my mom. I don’t even know if one simple blog post will do her justice, but I’ll try. Being a caregiver isn’t easy. It means you’re committed to helping someone, before you can help yourself. It means that you’re willing to put someone else’s needs before your own. Being someone’s caregiver is a choice, it’s not a requirement. And the decision to be one is done out of love. My mom is not only my caregiver but she is also my Dad’s, who has muscular dystrophy.

Mom5
NYC Summer 2017

The thing is, my mom didn’t chose this life. When she married my dad neither of them knew he had MD and they definitely were not expecting to have a child with Cystic Fibrosis. She has never once complained about the life that was chosen for her. She juggles taking care of my dad, myself and finding time for things she loves. If you walk into her bedroom you will find lots of yarn, spinning wheels and a weaving loom. Textiles are her thing and she is an amazing knitter. She can make anything from a simple scarf to a complex sweater. When she has to miss a knitting retreat or dinner with friends to help my dad or me, she says that she wants to be there with us. That she would rather be there to help us get through our struggle than go have fun with her friends. If that’s not pure love, then I am not sure what is.Mom3

You see, I’m alive today because of my mom. As a child you never want to do hours of treatments a day or spend time in the hospital. But my mom ensured everything got done and would spend every day with me in the hospital, finding ways to entertain me during it all. She kept my medications ordered and organized over the years and has spent hours at a time working through insurance issues. Now a days, I manage my own medications but that is because my mom set me up for success when it was my time to take it over. She prepared me for when Cystic Fibrosis would become my disease and when I would have to do things on my own.

Mom6
Mt. Vernon Rehab Hospital (Oct. 2016)

Last summer when I was in the hospital she came every single day. My mom’s presence made me comfortable. Some nights after she would leave me for the evening, I would be uncomfortable and unable to get to bed. I would send her a text telling her I couldn’t get comfortable or to sleep and she would jump back into the car and come back to the hospital until I fell asleep. Her presence made me comfortable. Her presence makes a lot of people comfortable.

Everyone who knows my mom can attest to the type of person she is. She is a firecracker and knows how to handle a tough situation. When I was in the ICU last summer, the nurses knew she was a ball of fire. She taught kids in drug rehab and every single one of them loved her, they learned from her and they graduated high school because of her. She knows how to give that tough love that many people need. My mom is also very loving. She always wants a hug in exchange for a glass of milk and would never let go if it was up to her. I still notice her frequently embracing my dad even though he can’t hug her back. That’s the thing about my mom, she does things out of the kindness of her heart and never expects anything in return.Mom2

So this month, for national caregiver month, I wanted to make sure everyone reading my blog knew how amazing my mom is. How amazing of a caregiver she is. How kind of a person she is. And how I’m alive today because of her. If you’re ever privileged enough to meet her, you’re one lucky person.