Miranda J.
Chronic condition(s):
Pulmonary Fibrosis, Dermatomyositis and Arthritis
How long has your condition(s) played a role in your life? Feel free to share when you were diagnosed/started having symptoms/etc.?
I was diagnosed with Juvenile Polyarticular Arthritis at 9 years old. I remember at that age before I was officially diagnosed I’d wake up in the mornings before school and my hands would be completely stiff. It happened a few consecutive mornings until I started losing the motion of my feet. I have blurred memories where I’d drag myself off the bed without using my hands and feet (moving like a worm) and just drop to the floor. Thinking back on it I have no idea why I would do that other than trying to get out of bed and get ready for school. Rotating my ankles and wrists and sometimes warm water would speed things up to help bring back to life my hands and feet. It took a few times for me to let my mother know what was happening to me and she scheduled an appointment at my pediatrician’s clinic. I kid you not when we arrived at the clinic I regained the motion of my hands and she thought I was lying my way out of attending school so we didn’t go to the appointment. The same event happened a second time and she decided to take me anyway to get seen. My mother let my pediatrician at the time know what had occurred and they ran some tests, this is when my mother found out I had Juvenile Polyarticular Arthritis. I was then referred to Scottish Rite Hospital and was seen there for the remainder of my childhood until I turned 18. I grew up frequently visiting my rheumatologist and they would do routine studies every 3 months along with closely monitoring my lungs. According to my mother, one day an X-ray came back with abnormal findings so they did a CT scan to investigate further. In February 2008, when I was 12 years young my mother was informed of my diagnosis, Pulmonary Fibrosis. They also gave her the unsettling news that I would only live for another 3-5 years. I have vague memories of growing up because I was in and out of hospital appointments so often that I never really paid detailed attention to my visits since my mother was the one in charge of everything. I would only look forward to getting free popcorn and visiting the gift shop my hospital had after a long day of tests, bloodwork, and a quick chat with my specialist. I also lived my whole teenagehood not knowing I had that 3-5 year prognosis so I lived as “normal as possible” aside from all the hospital appointments. The little memories that I do recall were that I was always exempt from participating in P.E class because I had weakness in my hands and feet and was so short of breath from simply exerting. I dreaded running and couldn’t do one push-up because my hands would ache and felt like my fingers would break. Winter was (and still is) my enemy, Arthritis pain hit me hard and my breathing became more restricted by the cold dry air. Fast forward to my third illness which is Dermatomyositis, officially I was diagnosed in February 2020 and if I'm not mistaken it was a week before the lockdown happened. I had early symptoms in 2018 and thought it was just an Arthritis flare. I previously learned to control my joint pain as an adult with Naproxen, but this time it didn’t work as well. I had no medical insurance during this flare until I acquired it and scheduled the earliest appointment for February 2020. Let me add that during this time I was a part-time college student and my daughter was between 1 and 2.5 years old. I had to navigate my infant and live through the excruciating pain of what DM made me go through. Living for almost 2 years thinking it was joint pain but in reality, it was muscle atrophy and skin inflammation. I remember her harmless little kicks hitting my hand and arms while I changed her diaper and it felt like a grown man was punching me. I was so weak that there were days when I couldn’t pick her up or her little hand squeezes were unbearable. I started losing strength in both my legs, and there were days when I could not get up from the bed, couch, or chair and needed someone to hold me and pick me up. Even with their assistance by simply grabbing me to help me get up, I felt the ache in my body that they were holding onto. There were days when I couldn’t drive because picking up my foot to move from the gas to the brake was nearly impossible. Turning the steering wheel was becoming an issue since my arms and shoulders were also being affected. I couldn't lift my arms above my shoulders. By that time, DM was taking such a toll on my life that I had to quit my job where I needed my hands and feet and was asking others at work to help me do mine. Just to name a few symptoms of how limited Dermatomyositis had me go through before I was diagnosed. Overall, my chronic illnesses all go together, meaning I was eventually going to develop one or the other throughout my life mainly because inflammation seems to be the main issue affecting my joints, muscles, skin, and my beautiful rusty lungs. And now here I am, it’s 2024, and currently undergoing a double lung transplant evaluation because ultimately I was going to need one after many years of fighting the progression of Pulmonary Fibrosis and everything else I have.
What has been your greatest challenge with your chronic illness?
My greatest challenge has been accepting my current situation with Pulmonary Fibrosis and how quickly it has progressed within the past 3 years… I am currently undergoing a double lung transplant (DLT) evaluation. I have yet to know the status of my listing since I just finished the evaluation on January 17, 2024. I have decided to go public with my story to spread awareness of PF as well as my journey of lung transplantation. I hope to reach those who can relate to my story. I know when I first started seeking people around my age with the same lung disease or have had a DLT, I could find very few.
What has been your greatest accomplishment with your chronic illness?
Aside from defying the outdated "3-5 year life expectancy" of Pulmonary Fibrosis and going strong at almost 16 years since my initial diagnosis in 2008, I hold on to being extremely proud of being able to become a mother. Despite all medical advice being against my pregnancy due to limited available data on the topic (significant maternal morbidity and mortality are reported for women with IPF who become pregnant.) My doctors at the time were against continuing my pregnancy and I stood my ground by going forward with it. When I was ready to give birth they tried to frighten me again by signing off to just doing a c-section and avoid complications during labor. I declined. I was lucky and blessed to have had my daughter to full term with no complications during birth, no medications during pregnancy, and no need for a c-section. She was and still is a healthy child. My doctors and I consider her a medical miracle with how easy and smooth my whole pregnancy was although I was carefully monitored and considered high risk. I’ve only met and connected through social media with two other moms who had a successful pregnancy living with PF.
Do you have any advice for someone new to the world of chronic illness? What is one thing you wish you had known that would have made your life easier?
My advice from one spoonie to another is to LIVE YOUR LIFE! Although we have physical limitations, make the best out of it, when you get those random days with so much energy, go out for a quick coffee run, hang out with a friend, do some self-care, etc. Although your illness is a huge part of who you are don't let it control your whole life. Challenging those negative thoughts and reinterpreting situations in a more positive light can improve your emotional well-being. I know it’s easier said than done but be kind to yourself, your body is already working overtime. If you feel alone, and trust me we all do at some point, try to connect with others who can relate to you through social media. Create your small circle of social support it has been so helpful for me to have this kind of support after hiding my chronic struggles for so many years. Ever since I decided to go public with my story I have connected with amazing people who understand what it feels to be chronically ill and relate to my daily life struggles.
Help support Miranda in her double lung transparent journey through her GoFundMe.
If you’d like to follow Miranda on her chronic journey, please check out her Instagram: @breathlessadventures
Feeling inspired to share your story too?
