The past year has been filled with amazing opportunities, new experiences, challenging realizations, and unexpected setbacks. I’ve had wonderful days surrounded by friends as well as very difficult days due to FOP flare-ups. I haven’t shared much about my personal life in awhile, so I wanted to finally write about some of the things that have been going on.
First off, I’d like to thank my followers who have remained such close supporters even when I haven’t posted much on my blog and Facebook page. I’m extremely grateful for everyone’s kindness and interest in learning more about me and my disease.
When I’m in pain or having a bad day, I’ll often find myself scrolling through the “likes” and comments because it brings me comfort and encouragement. Being able to share my life with others and hearing that it’s actually helping people in some way means more to me than I could ever adequately express. Thank you for the thoughtful messages, uplifting comments, and continuous thoughts and prayers.
Here are some recent life and health updates:
Earlier this year (February through April 2017) I experienced several different episodic FOP flare-ups. At one point I was dealing with pain in both hips, knees, and ankles that made walking difficult. Simple tasks (such as making a small meal or retrieving something from another room) became more taxing so I needed some extra assistance from my mom. It was challenging to allow my body to rest and not do too much around the house, but I knew that pacing myself was necessary.
I eventually had less constant pain and was able to start preparing for my first solo flight of the year. I traveled to North Carolina in late May to visit one of my best friends, Shay, and her family. We planned this trip in celebration of our shared birthday week, making it even more special! Shay and I became friends through The Mighty in the fall of 2015 after they published one of her blog posts (read it here). We met in person for the first time less than a year later. Shay also deals with serious chronic illnesses and is able to relate to me even though we have completely different diagnoses. She definitely understands the many aspects of life with rare, progressive diseases.
There were a few places we wanted to go together but we knew we’d also be content if we decided to stay inside. We ended up spending each day watching movies, Netflix-ing our two favorite TV shows (The Walking Dead and Gilmore Girls), doing crafts, taking photos, and sharing stories. Even though our pain and energy levels affected the scheduling, we still made the most of our time together. (Shay’s blog: shayweasel.com)
A couple days after returning home I came down with a virus that left me feeling very fatigued. I had a lot of different symptoms that lasted off and on for over a month. The sickness lingered due to FOP and I started noticing pain in my ribs and chest with shallow, painful breathing. This led to an ER visit – from 9 p.m. until 3 a.m. – where I had tests done and learned it was pleurisy (inflammation of the linings around the lungs) from the virus. I tried taking different anti-inflammatory medicines, but ultimately ended up on a high dose of prednisone (steroid) for a new FOP flare-up in my jaw.
The prednisone eased my jaw pain and the pleurisy, but other random flare-ups have begun since then. I’ve been dealing with a flare-up in my back and have noticed a subtle change in my posture. There are also two new bumps (bony lesions) that have formed, including one along my spine. Most recently, I’ve experienced less mobility in my right elbow after a flare-up that hasn’t yet subsided. I’m learning how to cope with all of this unexpected progression and figuring out new accommodations I may need to ensure my comfort.
Because of the overwhelming and seemingly never-ending medical setbacks, I was referred to palliative care. This is a medical program that aims to improve the quality of life for individuals with serious illnesses. I now have the support of a nurse who visits me at home every week to help manage my symptoms. I also meet with a medical social worker and occupational therapist as needed. Palliative care is short-term for me and will be in place for a few months until my health is a little more stable.
For now, I’m trying to do whatever I can to remain positive, patient, and hopeful. I’m increasingly thankful for my loved ones who have stayed by my side throughout these difficult days. I cherish quiet moments with Prancer, who provides my daily cat therapy. I’ve been spending time reading, listening to relaxing music, and writing every night in my phone. I know I don’t have any control over FOP, so I’m focusing on anything that brings me joy and peace. One day at a time.
“…this disease is knocking at my spirit. But it will not get my spirit. It’ll get my body. It will not get my spirit.”
-Morrie Schwartz (Tuesdays with Morrie)
• About a year ago I had the amazing opportunity of sharing my story with CNN! It was an incredible experience and I’m extremely touched by the outpouring of love and support. Thank you to those who have followed my story since then! Here’s the video and article in case you may have missed it: http://www.cnn.com/2016/12/26/health/fop-fibrodysplasia-ossificans-progressiva-jasmin-floyd
• I added a new page to this blog with some links to the recent media features that have been written about my life with FOP: jasminfloyd.com/features
• I also added a way for anyone to contact me directly through my blog; I’l then email you back! Click here: jasminfloyd.com/contact-me
• It was a huge honor to receive the 2017 Jeannie Peeper Inspiring Leadership award from the International FOP Association! I’m so grateful to be part of this wonderful community. Read about the winners here (scroll to the bottom of the link for my bio): ifopa.org/2017_winners