My last blog post was in late May, about a month after a very sudden FOP flare-up began in my jaw. In just three months I went from having over one inch of jaw mobility to less than one centimeter.
This progression affected many aspects of my life — primarily my diet, but also talking at length and being able to easily brush my teeth. I’m still working on adapting to the changes and figuring things out, which is partly why this update has taken so long to write. Instead of posting a health update like I normally would after a blogging hiatus, I’ve decided to focus more on the positive experiences that have helped me cope with everything.
spring, summer, & fall 2016
May
The first of several flights was to San Diego, California to celebrate my 23rd birthday with some of my family! My dad and I met up with my aunt and cousin and visited all of our favorite places: the San Diego Zoo and Safari Park, La Jolla Cove, and Seaport Village. This trip was my first time away from home since my jaw flare-up, but it was so comforting to have the support of my family to help me with whatever I needed. There were a few days I wasn’t feeling well enough to go anywhere and we still were able to make the most of each day.
June
I took a train to Boston and then road tripped to Portland, Maine with two of my friends the following morning! We spent about seven hours at the Old Port Festival, enjoying the live music (including our favorite musical duo, Karmin) and the overall atmosphere. I’m thankful that my body still allows me to be able to walk around a city, though I had to take lots of breaks. Days like these are so important to me because they give me a little reprieve from my daily life with FOP, even if it’s just briefly.
July
My mom and I traveled to our home state of Wisconsin to visit my grandma, aunt, uncle, and cousin, as well as some family friends. It’s hard living so far away from our loved ones, but we definitely make the most of the time we get to spend together. We also continued our 17th annual tradition of spending the night at a bed & breakfast!
August
I flew to Norfolk, Virginia to meet one of my best friends, Shay, for the first time in person! I happened upon her post on The Mighty last year; she’s also a blogger and is living with multiple chronic diseases. After contacting her through Twitter we formed an immediate bond and couldn’t wait to finally spend time together! As expected, we mostly just watched our favorite television shows: The Walking Dead and Gilmore Girls. It’s so comforting to find a friend you can completely be yourself with, one who seems to understand everything.
At the end of this month I had the incredible opportunity to be filmed by CNN Health for a profile feature! It was out of my comfort zone to talk on camera, but such an amazing and life changing experience in many ways. There will be a short video and article posted online soon!!
September
My next solo trip was to Orlando, Florida to spend a week with another one of my best friends! We had a few things planned, including a day at Universal Studios so I could experience it for the first time. I also met up with several other friends while I was there – we hung out at Universal CityWalk for an evening and Disney World another day. I hadn’t seen any of them for a while so it was really nice to have some time to reconnect.
Later this month into early October I had three public speaking engagements in three weeks! The first was at an FOP fundraiser in Middletown, Connecticut where I read a speech and my letter to FOP. Next was a patient & caregiver advisory board in Tarrytown, New York for Regeneron, a pharmaceutical company working on administering a potential treatment for FOP! Lastly, I shared my story interview-style alongside Philip Reilly, M.D., J.D. in Boston, Massachusetts at a luncheon hosted by Third Rock Ventures. Each experience was such an honor.
Read more about Regeneron’s work & mission: click here & here
Photos from the Third Rock Ventures luncheon: click here
October
My most recent trip was to San Diego again to spend a couple more weeks with my west coast family. We visited several different museums, the Zoo and Safari Park, the haunted Whaley House, and some historic parks. I also was able to meet up with my cousins for lunch – one of them lives in the Midwest and just happened to be visiting California the same time as me! The rest of my days were filled with Lost marathons, drawing & painting, and movie nights.
November
It took me several weeks to recover from all of these activities, but it was definitely worth it to me. My sudden jaw flare-up was a reminder that my abilities and independence, including traveling by myself, could be taken away from me at any time because of FOP. I’m determined to continue making crazy plans, taking risks, and having the types of experiences I had this year for as long as I’m able. I’ve made so many wonderful, positive memories in the past six months and look forward to even more unique adventures in the years to come!
DEAR JASMIN:
I’m writing you from Europe, Spain. Just learned about your case via CNN Website. After reading the article and visiting your blog, at the beginning I felt very sad about you, as no one should suffer something like FOP, specially someone as young as you…
But after that, I have started to feel much more impressed than sad, and the reason is your admirable attitude towards the disease, and how you do your best to live a full and independent life.
Please keep on being as strong as you are, and enjoy as many good experiences like the ones you describe in the blog as possible: don’t stop travelling,attending concerts,visiting museums, spending time with your family and friends, or in general doing whatever makes you happy, as these are the activities that will make you really enjoy life as much as you can, and as long as your health situation allows you to.
Best wishes, and hope to read new posts from you soon. Hopefully,this new year brings you and your family the best thing possible: the finding of a treatment for FOP. Already crossing fingers for it!!!
Thank you so much for your kind words and encouragement. ♥
i hope you dont mind but im doing a current event project on your story from CNN. could I? its ok if not. but i truly do feel inspired by you. you got this!
Of course! I would be honored. Thank you!!
the presentation went well. im also trying to raise awareness about FOP now.
Thank you, I appreciate it :)
I came across your story and read your fact list which everyone should do to help them understand your situation and what you are likely to experience. It was so good reading about all of your recent escapades and new experiences knowing that nothing can take them away from you, I truly hope you continue to experience the fun life has to offer you for many years to come. Best wishes.
Thank you!! I will do my best. :)
Hello Jasmin. I just became aware of your situation while reading about the passing of Debbie Reynolds on the CNN website. I read your story, watched a video, and then read your above blog entries here.
Jasmin, I am sure that you have probably already heard this many times before, but it really breaks my heart to learn about your situation. So young and full of life, and yet struck with this awful disease.
Myself, I am in my 60s now, and while I have my share of health issues, none of them are nearly as serious as yours, and none of them are life-threatening. Coming to learn of your situation makes me even more thankful to God that my health is still as good as it is.
Jasmin, I am a lifelong Christian, and just learning about your story makes it so very hard for me to understand God’s ways, particularly because you were afflicted when you were just a very young child who hadn’t even been polluted by the ways of the world yet. And yet, here I am in my 60s, and you may not even survive into your early 40s.
It is just very hard for a person like me to see and understand such things. All I can think to say is this:
“And we know that all things work together for good to them that love God, to them who are the called according to his purpose.”
Romans 8:28, KJV
Please know that I have prayed for you, that God will have His way in your life — as He always does — and that He will grant you the Grace to deal with whatever lives ahead.
Aside from being a writer and online evangelist. I am also a poet. I specialize in writing 12-line poems which I convert into graphic form using Adobe Photoshop. Since 2014, I have written almost 400 such poems. While most of these poems in some way revolve around my faith as a Christian, some of them do not, and touch on other subjects as well. Some are very serious, some make you think, and some are quite funny, in my view.
Anyway, if you enjoy reading short poetry, and I have the time and the interest, I invite you to visit my poetry page on the Bill’s Bible Basics website. My poems are currently divided into 90 different categories according to topic. Here is the URL for the main poetry page:
http://www.billkochman.com/Poetry/index.html
GBY my friend. May God have His way. You are an inspiration.
I apologize for that one little type. There appears to be no way to edit messages after they are posted here. Anyway, as you probably already understood, “whatever lives ahead” was supposed to say “whatever lies ahead”.
Thank you for taking the time to comment and for sharing!
You are the definition of inspiration and qualities like that are exactly what is important to people like myself. If you ever get into a bad mood just understand you help people in many more ways than other people could only dream of. Live life to the fullest girl!!!!
I saw you on CNN. You are so beautiful and I pray that God heals you.
Jasmine, I want to first off tell you how amazing of an individual you are. You may or may not know it, but you are an inspiration for us living in chronic pain. I really am thankful and happy that you were as strong as you are to share your story with everyone. I wish you many blessings in the new year and forever more.
God Bless You,
Evan Benson
@suffer_live – http://www.Suffer.Live
@StayStrongBox – http://www.StayStrongBox.com
I saw the CNN story about you and the extra difficulty you have, matched by your amazing strength and beautiful soul. You are amazing.
I’m no doctor and not one with the capacity to help you… but I hope that you’ll listen to and either email/call-in to the radio show (also Podcast) Bright Side with Pharmacist Ben Fuchs. He doesn’t charge anything. He’s a registered pharmacist who rather boldly states that all diseases are different if you treat “disease” as a verb: diseasing and if you can disease, you can reverse the processes causing the disease. He helps people to ween off prescription medication whenever possible, in favor of giving the body everything it needs and nothing that it doesn’t to allow a body to heal itself. He has been speaking extensively on connective tissue lately and I think he will continue to do so because it’s so important for everyone and MDs overlook this important part of health.
Don’t want to give false hope, I’m not affiliated with him or anything (just a radio listener and also caller) that believes in what Ben is doing and I feel that he’s helped me with some of my own health issues. I hope that he can help you out too as he’s done for me. God bless you.
You are truly an amazing person . You are an inspiration for everyone who does not know how to be happy with what they have.
I wish you the very best .
I saw the article about you on cnn. Thank you for sharing your journey with everyone. You seem like a wise, amazing, and smart young lady. I wish you nothing but the best!
I usually don’t comment on stories, but I found yours to be particularly inspirational. It is amazing how one life lived can impact so many others; the butterfly effect with infinite magnitude and duration. Thank you for sharing your journey and for inspiring me personally. May your positive impact on the many who have read your story give you comfort when you need it. The world is truly a better place with people like you in it.
Saw you on cnn.com and really am impressed by your outlook and your ability to get out there in life! And your love for washing dishes. Is there any surgical way to relieve some of the pressure on your chest? My best to you in the new year!
I’ve just read your story on my google newsstand and I really adore your mindset to get up and live life to your fullest eventhough you know whats to come. I hope that you’ll live a happy life
Just read about you while being in Tokyo… Praying and will come up with some idea for fundraising to help. Blessings. Btw: we have a ballet company http://www.abc-tokyo.com here in Japan. I am Austrian, by wife Japanese Austrian and we have a small daughter Manna…
I just saw the article on the CNN newsfeed. You are an inspiration to many and your ability to travel and enjoy life to its fullest has given me new hope to do the same. If you can inspire others through your actions then no one should say never. But everyone should say yes to living with passion no matter the costs. Never give up hope or faith in the unseen or God. You are incredible and a beautiful example of hope.
I wish you all the best and good luck ! ! ! ! 😉😉😉😉
You just destroy yoursels with autosugestion. All diseases are in fact autosugestion. People believe the medics and the laboratory exams and then they start to think are sick and when you think something about yourself, it starts to become reality,
This comes from lack of faith in God. Yo may eveb be an atheist. Just stop believee anything else but God. Ignore what medics and exams shown and you gonna see disease dissapearing. Start a vegan diet and you’ll feel you stepped from hell to heaven.
Please explain to everyone, what experience do you have in the areas of medicine OR religion? More than the specialists who have dedicated their lives and careers to finding a cure? More than the God of the universe? Had you taken the time to learn Jasmin’s story, not quickly judge, and the research on this disease (www.ifopa.org), you’d see how absolutely pathetic your comment is.
Jasmin was initially given wrong diagnoses and was certainly not looking for answers through medicine when she was 5 years old! In regards to your second paragraph, how dare you assume the “lack of faith” and give poor advice to someone you’ve never met.
Gibberish..
I just saw your CNN article and video, Jasmine, and wanted to express my admiration and best wishes. My daughter was diagnosed with several autoimmune disorders when she was very small, and I have watched her over the years be such a trooper. She is almost always positive and almost never complains, but she has passed through many difficult times when she has been overwhelmed by the random and unfair nature of life. I’m sure you have had such moments as well. I love her so much, as I’m sure your parents and friends love you. So I very much understand your mother’s feelings of powerlessness and heartbreak at watching you struggle and suffer, and her pride every time you overcome challenges that would paralyze the rest of us. Your beautiful spirit shines through every frame of the CNN interview. Your family and friends are so fortunate to share their life with someone so wonderful. I wish you all the best that life can offer. Thank you for sharing your story.
You are a beautiful person stay strong!!!
Jasmin, you inspire! From a short read of your blog, it’s evident that you are “in the arena” and “daring greatly” every single day. Do you know Brene Brown’s work? Google her TED talk on vulnerability or check out her books, including “Daring Greatly.” I think you’ll relate.
Your blog educates and inspires at the same time. Keep up the good work!
Great job on the CNN interview, btw.
Jasmin,
Thank you for your example of courage and perseverance. <3
Jaime (and Lily Jane Potter, my Maine Coon)
I’m so impressed with your strength! My cousin Sophia also has FOP, however her physical limitations are much more severe yet her optimism is amazing as she too makes the most out of life! Smile on and live your life to the fullest!!!!!
Hey Jasmine. I really admire your outlook on life. Would it be ok if I asked what you do in the morning before you start your day?
Hey Jasmin, if you ever get down to so cal again, I’d love to take you to Disneyland.
I just saw your story on CNN and I am so inspired by your positivity and courage! You are a beautiful person inside and out and I am so touched by what a trooper you are. You count each and every blessing which is a rare gift. God bless you going forward on your journey you have such a bright light burning for others to see.
Jasmin!
Go get it, girl! I love how you are pushing ahead despite the challenges! And, when I was a kid (in the 70’s & 80’s) I had asthma pretty badly – struggled to participate in so many normal activities because I just couldn’t breathe. I was sick a lot. When I was in high school, rescue inhalers became avlb – I was sceptical…having tried SO MANY meds w/little success. Well, albuterol worked and was followed by fantastic preventitive meds and I experienced such freedom as a result. I pray for rapid advancement in the search for a cure for FOP & for your cont’d mobility & remittance of symptoms. If you ever feel like coming to Atlanta, look us up! We (me, my hubby & 2 boys 19 & 17) would love to show you the town! Sincerely! Meg
So happy to hear about your travel with family & friends. Your positive attitude is inspiring. Thanks for sharing.
Thank you so much!!
Jasmin, I am very happy to read your post today with all your travels with family – Mom ❤ – and friends! Your are an incredible inspiration to do several speaking engagements and I look forward to your CNN Health profile feature – how awesome! I checked those links you provided and so encouraged about Regeneron’s trials leading to more and more progress! The Third Rock Ventures luncheon pictures are terrific – your smile obviously lit up the room, and I’m sure you touched the hearts of everyone present! You make friends everywhere you travel! I love seeing pictures with your dear friends and the places you’ve made trips to! You are a dear, dear friend to me!!! I will be looking forward to learning when your CNN profile airs! Love you Jasmin XOXO, Cathee
Thank you, Cathee!! I appreciate your comment and your kind words so much. Maybe I can plan a trip to NYC sometime next year! Love you! ❤
That would be great! I wouldn’t be surprised to know you would be doing speaking engagement(s) and TV interview(s) here in NYC in 2017! ❤