Written by Jennifer Weaver
Navigating a chronic illness can be an overwhelming journey, filled with misdiagnoses, confusion, and emotional highs and lows. Jen Weaver lives with pustular psoriasis, a rare form of psoriasis caused by TNF inhibitor treatment. Her journey, which began in 2016 with the appearance of sores on her ankle, highlights the importance of persistence, self-advocacy, and finding the right treatment.
Initially mistaken for a skin infection, Jen's condition went through several misdiagnoses. This period of uncertainty and frustration is something many patients with chronic illnesses can relate to. Jen recounts her visits to urgent care and her family practitioner, where she was prescribed antibiotics and ointments that did little to alleviate her symptoms. It wasn't until a visit to her rheumatologist that the true nature of her condition was revealed. The rheumatologist, along with her colleagues, identified the sores as pustular psoriasis, a rare reaction to TNF inhibitors in about 1% of patients.
This revelation was both a relief and a new challenge. Jen had to stop the TNF inhibitor that was effectively managing her joint health and seek a new treatment that could address both her joint and skin conditions. This part of her journey was marked by trials and errors with various treatments prescribed by a dermatologist. The initial treatments were painful and ineffective, causing more discomfort and distress. However, Jen's determination and self-advocacy led her back to her rheumatologist, who then prescribed weekly injections and later a daily pill that began to show promising results for both her pustioar psoriasis and rheumatoid arthritus.
Jen's experience underscores the importance of being proactive in one's healthcare. She emphasizes the need to communicate openly with healthcare providers, to speak up when treatments are not working, and to seek alternatives when necessary. Her story is a testament to the power of persistence and the importance of finding a healthcare team that listens and responds to patient concerns.
Throughout her journey, Jen experienced emotional highs and lows. The initial heartbreak of having to stop a treatment that was working for her joints was profound. She felt as though she was starting over, facing the daunting task of finding a new treatment regimen. The painful treatments prescribed by the dermatologist added to her physical and emotional burden. However, the eventual success with the daily pill brought a sense of relief and hope. Jen's skin began to clear, and her confidence grew as she saw the positive changes.
Jen's story is not just about her struggles; it's also about her triumphs and the lessons she has learned. She shares valuable insights and practical advice for others dealing with similar health challenges. She encourages listeners to find what works for them, to be vocal about their needs, and to never give up hope. Jen also offers to share her personal toolkit, including her favorite soothing lotions and treatments, with anyone who might benefit from her experience.
Jen's journey from misdiagnosis to understanding, from frustration to clarity, is a powerful reminder that there is light at the end of the tunnel. Her story encourages listeners to stay active in their healthcare, to find supportive healthcare providers, and to keep searching for effective treatments.
Jen's openness and willingness to share her journey provide comfort and inspiration to many. Her message is clear: you are not alone in your struggle, and there is always hope for better days. For those interested in more details about her journey and the treatments she found effective, Jen invites listeners to reach out to her on Instagram at
MySpoonieSisters or
Gracefully Jen
