Tue | Sep 25, 2018

Julie Ann Lewis’ defiant fight

Published:Saturday | December 9, 2017 | 12:00 AMTamara Bailey
Lewis in hospital during one of her low moments

"The strength of a woman is not measured by the impact that all her hardships in life have had on her; but the strength of a woman is measured by the extent of her refusal to allow those hardships to dictate her and who she becomes."

- C. Joybell

If Julie-Ann Lewis could relive the days of her childhood until her last day alive, she would take advantage of every hour each day possessed, as living with a life-threatening disease that compromises her daily bodily functions is no easy feat.

It can, however, be said that her illness was a blessing in disguise, as it paved the way for 'Julie's Escape' jewellery line and handcrafted items.

"My illness is referred to as secondary adrenocortical insufficiency. This is a condition in which a lack of adrenocorticotropic hormone (ACTH) prevents the body from producing enough cortisol (the body's stress hormone)," Lewis explains to Family & Religion.

"Production of cortisol is controlled by the action of ACTH, which is produced by the pituitary gland. This gland is controlled by the hypothalamus in the brain. The symptoms are the same as for Addison's Disease, which include severe fatigue, loss of appetite, weight loss, nausea, vomiting, diarrhoea, muscle weakness, irritability, and depression," she disclosed.

But how did Lewis get to this stage?

Lewis related: "It all started in about 2003. I started having severe fatigue, weakness, stomach issues, salt craving, hair loss, and feeling extremely exhausted even if I slept for 12 or more hours. This continued for some time despite doing several tests. My doctor at the time suspected adrenal insufficiency and advised that I go to the United States to get help, as some of the tests were not available in Jamaica"

She travelled to Texas in January 2005 and was finally diagnosed after a doing an ACTH stimulation test, which measures how well your adrenal glands respond to ACTH.

"When I first heard my diagnosis, I felt somewhat relieved because I thought that I would push through it and get back to my 'normal life'. I was placed on dexamethasone tablets," Lewis recounted. "I did some extensive research on my illness and found some disturbing news like lifelong treatment with steroids. At this point, I still said to myself that I will fight this thing and be better in no time."

But Lewis was in for a shock, as this disease had a plan to cramp her dreams and goals and have her, instead, preparing for death.

 

NOW A NORM

 

She continued to tell her story: "In 2007, I went to Cleveland Clinic Florida Hospital in search of answers again. My medication was changed to hydrocortisone tablets. My dose kept increasing, and my diagnosis was confirmed again. It was reinforced that my condition is very rare (1 in 100,000 persons). I subsequently started to have better days, but as time progressed, I started to decline again. I started having more adrenal crises (with symptoms such as back pain, mental changes, vomiting, trouble breathing, muscle weakness, blood pressure and heart rate changes) and severe pain was now another norm."

In 2015, Lewis had a very bad adrenal crisis and was treated at Cleveland Clinic Hospital.

"Adrenal crisis will result in death, if left untreated. I tried to push myself even more, but I always knew in my heart that I was just not well," she recounted. "Eventually, I knew that it was time for me to accept that adrenal disease is a war you literally have to fight laying down".

Lewis travelled to the US and Canada, searching for answers, but the response was the same: no cure.

She recounted: "My physical pain and suffering were now more than I could manage. I was on morphine and lots of other medications. While in Canada, I had to get a PICC (peripherally inserted central catheter) line because I now had no intravenous access. I used to be stuck in excess of five times just to find a vein. The PICC line was something else to get used to as I had the intravenous connections hanging outside my arm all the time".

Earlier this year, Lewis' illness got so bad, she called her priest to afford her last mass, but that period was really a pothole in the road and not the end of the road.

How did she become strong enough to start her own business, boasting several successes?

Next week, we share it all with you.

familyandreligion@gleanerjm.com