When Sara Gorman was diagnosed with systemic lupus in January of 2001, she realized three things very quickly:
One - whether she liked it or not, she had been initiated into the world of pharmaceuticals.
Two - She was going to be on a first-name basis with her pharmacist for a very, very long time.
Three – She needed to figure out a way to organize all of her medication, and it certainly wasn't going to be by using an ugly, plastic, sterile-looking pill box.
Nope - this young, energetic, fashionable gal wasn't going to succumb to "Big Blue". So she resisted, and resisted some more. But after missing a dose here and a dose there, struggling to renew her prescriptions on time, and flat out losing track of what pills she'd taken and when, she broke down and started using the box.
And she hated it. It made her feel ten times older than she was, it never stayed closed, and she was embarrassed to pull it out when she had to take her pills at the office, when she was out to dinner, or even when it was just sitting in her kitchen when guests came over.
So a few years later, she decided to do something about it.
Once the Pillfold was in production, she launched a second bag, the Pillpouch, designed to stow and tote prescription medicine bottles discreetly and securely. Both patent-protected bags have the look and feel of a sassy little handbag – who would know pills were hidden inside? Most importantly, who needs to know?!
What did Sara do before designing her line of Pillbags?
Several years before, in 2004, Sara stepped down from a management position in television production, realizing that the fast-paced, deadline-driven environment was no longer compatible with her new life with lupus. It was too much – and it was taking a severe toll on her health. She worked part-time from home for the same company for two more years, but still wasn’t able to achieve the stable health and wellness she knew she deserved. So, after 10 wonderful years in an industry that she loved, and just shy of 32 years old, she decided to let go of her career for good.
As difficult as it was to walk out of her office for the very last time, she knew there was another opportunity that awaited her. Now, she’d have the chance to share the experience and wisdom she’d gained from years of living with lupus. She’d learned the art of embracing the disease, rather than fighting against it, and it was that story that she wanted to share with the lupus community at large.
In 2009, she wrote and published a book detailing the steps she’d taken to start living well with her disease, Despite Lupus: How to Live Well with a Chronic Illness. She launched a blog by the same name at www.despitelupus.com. where she talked candidly about her journey with lupus. Within months, the book and blog had filled a void in the lupus marketplace. Sara was connecting with lupus patients from around the world, through speaking engagements, book signings, and conversations on her blog. Most importantly, she was able to maintain her health and wellness while continuing with her book and blog endeavors, which are still thriving today.
What is lupus and how does it affect Sara?
Systemic lupus erythematosus (SLE) is a chronic, autoimmune disease in which the body attacks itself. In a person with lupus, the body sees tissue & organs as invaders, and actually creates antibodies that attack and destroy healthy tissue. In systemic lupus, which is the type Sara has, any part of the body can be affected – heart, lungs, kidneys, the skin, joints, etc. It can take a lifetime of adjustment to learn how to manage and cope with the illness, and most often requires a lifetime of medicine dependency. Remission is rare, and in some cases, the disease can be life-threatening.
When Sara was diagnosed with lupus in 2001, she was 26 years old. She had been married less than six weeks, and was enjoying a thriving career in television production. Her first symptoms were pleural effusion, which is fluid around the lining of the lungs, joint pain and swelling, constant fever, sore throat and swollen glands. Within about two weeks of those symptoms appearing, it became evident that something was very wrong. What 26-year old experiences immobilizing pain and swelling in her joints? She sought medical attention, and within another two to three weeks, she had a diagnosis of lupus. This is rare – as most people with lupus can go months, if not years, before receiving a diagnosis.
Sara’s symptoms continued and increased - those first few years with lupus being the most difficult time in Sara’s life. She developed kidney involvement, suffered from pancreatitis, was severely anemic, so much so that blood transfusions were required, saw the return of the fluid in her lungs, experienced rashes, hair loss, angiodema (random swelling throughout the body), joint pain/swelling, and saw the inside of one too many hospitals and emergency rooms. She struggled to put one foot in front of the other on most days – but like most twenty-something year olds, she was determined not to let a chronic illness dictate her plans for the future. Thus, she was slow to admit that her busy lifestyle and indomitable attitude were hindering her chances for a long, productive life. After four years of running her body into the ground, she realized she was fighting life, instead of living it. She downshifted almost every part of her life, making physical and emotional changes that she never thought she’d have to.
But her efforts have paid off. Today, she is happy and healthy, enjoying a busy, yet manageable life with her Pillbags, book and blog. She continues to keep her health and wellness at the forefront, making decisions and sacrifices everyday to try and keep lupus at bay. She now has two young daughters, born in 2008 and 2010, who are testaments to her commitment to living well, despite her chronic illness!
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