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PATIENT PROFILE: Leilanie Crofton-Ball (Part 1 of 2)

“Life might look a lot different to what I planned, but there's still life in me and I'm striving to live it with all I've got. My mottos are 'faith over fear', 'keep on keeping on' and 'blessed to be a blessing”

Around this time, 5 years ago exactly in September, I was fighting for my life in ICU/high care.  I wasn't aware of much going on around me as scans, Xrays, scopes, tests and more tests were done.  Days turned into weeks and I, who once wasn't afraid of needles, became terrified every time a saw a figure approaching my bed with a small bag.  

After consulting with various doctors, and a final thoracotomy, they had a name for what was ailing me. A nonspecific lung disease. It had no cause but was wreaking havoc with my lungs and apparently was here to stay. They also put a name to several symptoms that were attacking my body, and mind, and it was Lupus! I had never heard of it. Oh well, at least I could blame the horrible things that had been plaguing me for a while on Lupus. (Lupus gets its name from the Latin name for wolf because of its apparent rash like mask on the 'victims' face.)  

Several years before, I had tested positive for an autoimmune disease, namely, Rheumatoid Arthritis. I felt a bit too young (in my forties) to have a disease that I associated with the elderly. Back then, I was still relatively active - walking, hiking, swimming, sailing, climbing trees - yes climbing trees - as I am blessed to have two sons and I played really hard with them outdoors when they were young.  

As life went on, pain became unbearable. My mental health was becoming a bit of a challenge, and depression set in.  The pain was debilitating, and my family and I couldn't understand what was happening to the bubbly, active person I'd always been.  I was just as confused.  My general practitioner put all these symptoms under the label "Fibromyalgia". After many months of struggling with these, and various additional symptoms, I landed in emergency and well, that's where my story started. 

After recovering sufficiently enough to be told what it was that had brought me to ICU/High Care, I had to take time to process these foreign words: “Nonspecific Interstitial Pneumonitis" and "Lupus". I saw the look in my sister’s faces and knew from their reactions that this wasn't a good diagnosis. 'Ok', I thought, 'now what?' 

As the medications started working, my thinking became clearer.  I came to understand that my body was in a constant battle against itself. My lungs were deteriorating, and I was literally fighting for every breath. I didn’t know where to from here.

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