Navigating Life with Chronic Illness
Hello, everyone. I'm a 38-year-old woman, and for most of my life, I’ve been burdened with a multitude of chronic health challenges. Recently, the weight of it all has become exceedingly frustrating, leaving me uncertain about what steps I can take next. At the age of 15, I received a diagnosis of Lupus along with Lupus Nephritis. My prominent symptoms included severe immobilization and an overall sense of malaise. My treatment involved high doses of steroids coupled with a six-month regimen of Cytoxan. During my childhood, I experienced unusual allergies. For instance, my skin would break out in rashes when it came into contact with cold surfaces. Additionally, I was born with a condition known as Marcus Gunn jaw-winking syndrome, which impacts my left eye. In 2016, I encountered a significant issue with a cyst in my right breast. Despite several months of antibiotic treatment, it kept reappearing, eventually progressing to a deep-seated infection that resembled mastitis. This unfolded into a series of complications, including a PICC line and encountering a superbug; thankfully, after two years, it subsided. The medical team speculated that this may have been linked to my immune system. About six years ago, I was also diagnosed with Hypothyroidism. I regularly suffer from debilitating migraines, for which I receive Botox injections every three months, yielding substantial relief. However, a recent CT scan revealed the presence of fibrous dysplasia in my left sphenoid sinus, which adds another layer to my complications. Moreover, I grapple with depression and anxiety, which are partly due to the cumulative toll of my health struggles as well as the hardships of my early years. Next month, I plan to consult a psychiatrist as I suspect I might have ADHD in addition to my existing conditions. On another note, I have always dealt with dry skin, particularly on my hands and feet, likely a result of lupus; however, my foot issues have escalated drastically. My heels now exhibit a thick, discolored callus that requires regular debridement, yet it continually returns. After consulting numerous physicians who were unable to provide solutions, one finally diagnosed me with Pityriasis Rubra Pilaris. Topical treatments have been ineffective, and I cannot explore biologic options at this moment due to my current medications—Cellcept and Lupkynis for Lupus. Presently, I take prednisone, Plaquenil, Cellcept, Lupkynis, and levothyroxine. To sum it up, it’s just overwhelming. I strive to manage everything, but it feels like an insurmountable challenge at times. I suspect these various conditions might be interrelated, yet no one has considered a holistic view of my health. I often find myself addressing each issue individually while wondering if there is a deeper cause I should be exploring. Or perhaps this is just the reality I must accept, and I am doing all I can, needing to find a way to cope. The constant feeling of being submerged in health-related struggles is daunting. I recently discovered that my hospital has a center dedicated to rare diseases, and I would be open to participating in studies or clinical trials. I'm sharing my experiences here in hopes of gaining different perspectives or advice. If there are any healthcare professionals or fellow patients with insights, I would greatly appreciate your input. This is my inaugural post on Reddit, so thank you for taking the time to read my story!
Answers (1)
7/31/2025, 8:20:52 PM
OpenHealth AI
Thank you for sharing your experiences in such detail. It’s clear you’re facing numerous challenges, and it’s completely understandable to feel overwhelmed. Here’s a structured approach to your situation, focusing on actionable steps.
Main Points
You have multiple chronic health conditions, including lupus, hypothyroidism, and skin issues, which contribute to your feeling of being overwhelmed. Exploring holistic care and participating in research studies may provide support.
Explanation
Living with chronic illnesses like lupus and its related complications can be daunting, especially when symptoms and secondary conditions feel interconnected. Given your history of immune challenges and the complexity of your conditions, it's important to approach your health holistically. This means not just treating individual symptoms but also understanding how various conditions might interrelate and influence one another.
Next Steps
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Holistic Health Assessment: Since you feel your conditions may be interrelated, consider asking your healthcare providers about referring you to a specialist who can evaluate your health from a holistic perspective, such as a rheumatologist or an integrative medicine specialist. They might be able to help connect the dots between your diagnoses.
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Participate in the Rare Disease Center: Engaging with the rare disease center could provide not just potential treatments or information about your conditions but also connect you with specialists who may have insights into your overall health. This can be valuable for both medical and emotional support.
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Manage Skin Issues: For your thick calluses and pityriasis rubra pilaris, gentle daily care using moisturizing creams can help. Look for moisturizers with ingredients like urea or lactic acid, which can soften tough skin. Since topical treatments haven’t been effective, it may be worth consulting a dermatologist who specializes in autoimmune-related skin conditions to explore alternative therapies.
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Mental Health Support: Since you’re already planning to consult a psychiatrist regarding potential ADHD, this is a great step. Managing mental health is crucial when dealing with chronic illness. Consider therapy options (CBT or supportive counseling) that specifically address coping strategies for chronic illness and anxiety.
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Support System: Look for local or online support groups for individuals with lupus or chronic health conditions. Sharing experiences with others who understand can provide emotional relief and practical strategies.
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Keep a Symptom Diary: Documenting changes in your symptoms, treatment responses, and mental health can help you identify triggers and patterns that might be useful for discussions with your healthcare providers.
Conclusion
While managing multiple chronic conditions can be overwhelming, taking these steps may create more coherence in your treatment approach and provide relief. Acknowledge that it’s okay to seek support and that you’re doing your best under challenging circumstances. Please feel free to share any further questions or updates as you explore these options.
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