The story of Venus
This is a story of a mother, a daughter, a sister, a wife, a friend, an employee, a manager and a colleague…. It is a story of a woman who was recently and unexpectedly diagnosed with a rare autoimmune disease. She could be your mother, your daughter, your sister, your wife, your friend, your employee, your manager, or your colleague… She could be you.
This story takes place at the office where she worked, at the multiple Dr’s offices where she received her diagnoses, behind the steering wheel where she cried, on the OR table where she almost died, and in the isolation of her disease.
This woman loved her family, her work, and her colleagues. She was happy to find a position at a company that felt like home and she went to work every day ready to tackle new challenges. In March of 2021, she found out that she was expecting and would be a new mom again. With many new challenges at work and now this news of two new babies to come, she was sure that this was going to be a year of excitement for her. She was not wrong. She juggled pregnancy, work, and home like a boss. With a number of Senior Leaders leaving, she worked through organizational and strategic changes, working to alleviate the fears of her team and some of those who she partnered with. She was always good at that – helping others to see the positives in different situations and calming their fears. She had no idea that this would be the year that her ability to stay positive for herself would be put to the test.
During her third trimester of pregnancy, her body began to attack itself and the twins that she was carrying. As the disease ran rampant, she was covered from chest to toes with open blisters followed by plaques – her skin, a casualty of this war that her body had waged against itself. As the disease continued to advance, it turned part of its focus on her twins; resulting in one being diagnosed with SIGUR. Damn the disease’s ability to multitask! She was placed on an aggressive steroid treatment – so high a dose that it compromised her immune system, making her susceptible to a number of infections that would take her months to fight off. The medicine was almost as bad as the malady, and both would lead to further illnesses and life-threatening complications. She had to receive treatment from many different specialists as she was severely impacted by the treatments. One of the specialists that treated her labelled what had happened the “perfect storm.”
Hunkering Down During the Storm:
With bolts of fear and clouds of doubt hovering over her head she hunkered down, trying to put up emotional barricades to keep her mind safe. She had become ashes where she was once fire. She felt so alone. She often cried in her office behind closed doors, in her car on her way home from work, and in her bathroom away from her husband and children. The tears fell from her eyes, rolled down her cheeks and fell unto her breasts burning a hole in her chest like an acid rain – outward smiles to mask her pain and laughter to closet her loneliness. She felt the need to maintain an image of strength for those around her.
Despite her feelings of isolation, she wasn’t in this fight alone. Her family, friends, and closest colleagues did the best they could to lift her spirits and to help her stay busy. Her family took over many of her at-home responsibilities as there were times where her activities of daily living were restricted. While her leader offered her some time off from work and the ability to work remotely as needed, she needed to stay busy and didn’t want to be alone. Work had become part of her treatment plan as keeping busy left less time for worry and fear and sticking to her “normal” routine made her feel like she had control over at least some aspects of her life. Some of her colleagues who noticed she was not the same became allies in her fight; one colleague bringing her Ensures to help her and her babies gain weight and another researching the illness and calling on a family member of his who was a physician to gain some additional thoughts on medications and treatment. Their support gave her strength.
Physicians Working to Learn More:
Her treating physicians at the Great University of Penn were stumped as they admitted to “maybe” seeing one to two cases like this. Her case was so aggressive and the disease so rare, that she was asked permission by the treating physician to have her case reviewed at some of the conferences that the Dr was scheduled to attend: his goal, to mindshare with other physicians on additional treatment options. She is now a “case study” – a medical summary with photos. No Face. No Name.
Coming Out of That Disability Closet:
While their case study has no name, our PG Warrior does. Her name is Venus Hernandez. She IS a PG Warrior. I AM a PG Warrior.