Seeking Guidance and Support
This might end up being quite lengthy, so I appreciate your patience in advance. I am a 48-year-old woman, 5 feet 6 inches tall, weighing 95 pounds. Here’s an overview of my medication treatment: I take 25 mg of Adderall daily, 1 mg of Clonazepam as needed, and 100 mg of Seroquel primarily for sleep. Additionally, I hold a medical cannabis card. My two sons have been diagnosed with Alport Syndrome, each having different fathers. Since April 2025, I've been experiencing significant difficulties. Having worked as a registered nurse, I possess a solid understanding of medical diagnostics and the complexity of health conditions. This background prompted me to pay for a commercial genetic test to identify patterns within my family medical history. I do recognize that interpreting genomic data should be approached with caution. Throughout my medical journey, I’ve faced an array of labels including alcoholic, addict, dramatic, bipolar, and attention-seeking, alongside accusations of faking my symptoms or experiencing psychosomatic seizures. I've endured mistreatment during multiple ER visits. My medical history includes consultations with specialists in gastroenterology, cardiology, neurology, neuropsychology, psychiatry, and two different ENTs. I have been transitioning to a new primary care provider, attending therapy and physical therapy, and regularly visiting a chiropractor. Moreover, I have upcoming appointments with pulmonology and rheumatology, and a second referral for genetics due to the lack of thorough documentation in my initial case. Despite consultations with numerous healthcare professionals, I frequently hear that "everything appears normal," and occasionally receive frustrating responses like, "I’m sorry; I’m unsure how to treat this." I can only remain upright for about 5 to 7 minutes before I face severe shortness of breath, bluish discoloration in my toes, and debilitating head pressure. The autonomic storms I experience are truly exhausting. I have been officially diagnosed with: - Connective tissue disease (hypermobile Ehlers-Danlos syndrome), but not through a specialized EDS professional. - Postural Orthostatic Tachycardia Syndrome (POTS). - ADHD and Autism, complicated by masking behaviors. - Gilbert Syndrome, which significantly affects my metabolism of certain drugs. - Bilateral nasal and facial collapse (I seek no cosmetic improvements, merely the ability to breathe). - COL4A4-related basement membrane disease (within the Alport spectrum). I also have a pacemaker due to tachy/brady sick sinus syndrome, although I suspect it’s largely due to autonomic dysregulation. Genetic testing indicates that I have ineffective absorption of B vitamins, mitochondrial disease, and a lack of response to various medications (all SSRIs/SNRIs, intolerance to estrogen, and issues with medications like Remeron and Benadryl). There is much more to my story, but if you belong to a similar community, you can likely empathize with my struggles. I feel like I’ve lost the essence of myself—my nursing career, the custody of my children due to alcohol accusations, my ability to drive, the support of friends and family, and even my clean and well-kept home. Simple tasks like taking a shower now feel monumental. I’ve suffered dental loss due to unconscious jaw grinding, and dentures are intolerable for me. My social life has deteriorated, affecting my enjoyment with food-centered gatherings and beyond. The trust I once had in the healthcare system is shattered, leaving me questioning my self-worth as my opinions seem disregarded. Since April, I have suffered 33% atrophy of my pancreas and now also have a pancreatic cyst. I do not consume alcohol or other drugs. I find myself immobile in bed, feeling trapped in a reality where my body fails to cooperate and my mind races uncontrollably—a prison, both mentally and physically. What steps can I take to improve my situation? During a recent POTS evaluation, when I experienced a drop, the staff insinuated I was feigning my symptoms since I remained aware of what was happening. It seems there’s a hesitancy among healthcare providers to alter my medical records, despite the dire circumstances. If I experience the humiliating act of ammonia being waved in front of me again—dismissed as a waste of time—I believe I may reach my breaking point. I am highly aware of my non-epileptic condition, so an EEG is not necessary. It’s a misconception that I have comprehensive insurance coverage. Even if insurance were not an issue, I deserve to be treated with compassion, like family. I may be petite and lacking teeth, but I am not struggling with substance abuse. Dentures trigger feelings of choking and suffocation. Also, I wonder when doctors and nurse practitioners stopped conducting thorough assessments and physical examinations. Reviewing past medical notes reveals they often fabricated data regarding my condition. How do they ascertain my abdomen is normal without even examining it? I encounter this issue repeatedly. What phrase or strategy successfully grabs the attention of ER staff when urgently needing care? I have avoided emergency rooms recently due to past experiences, yet if compelled to return, I need effective ways to communicate my critical situation. I have a neurology appointment scheduled for March, yet I worry that after enduring prolonged episodes, I may struggle to communicate my health narrative coherently. I want to ensure I convey the entirety of my medical history to avoid missing vital details. Many concerns are weighing on me, with the facial collapse and chronic breathing difficulties taking precedence. The ordeal of navigating daily life—managing physical space and the constant fear of falling—is overwhelming. Despite increasing my fluid and protein intake, wearing compression garments, and pacing my movements, I find the situation unmanageable. The looming fear of being disbelieved or dismissed adds to my already heavy burden. Additionally, I am struggling to find a case manager or care coordinator to assist me. If anyone can offer support or advice, I would be extremely grateful. I’m located in Kentucky.
Answers (1)
2/9/2026, 10:31:01 PM
OpenHealth AI
Thank you for sharing your detailed health journey. It’s clear that you’re facing significant challenges, and it’s understandable to feel overwhelmed given your complex situation. Here, I’ll provide structured steps to help you navigate your health concerns and improve your quality of life.
Main Points
- Prioritize Communication with Healthcare Providers: Develop a clear, concise way to convey your concerns in medical settings.
- Manage Symptoms and Daily Life: Focus on practical strategies to cope with the symptoms associated with your diagnoses.
- Seek Support for Coordination of Care: Explore options for a case manager or support group to help navigate your care.
Explanation
Your history of complex health issues and frustrating experiences with healthcare providers can lead to feelings of isolation and hopelessness. It’s vital to find ways to effectively communicate your condition and advocate for yourself, ensuring that you receive compassionate and attentive care.
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Communicating Effectively in Emergencies: When visiting an ER, consider using a prepared statement like, "I have multiple chronic conditions, including POTS and connective tissue disease, which cause severe symptoms. I need urgent attention for my breathing difficulties." This makes it clear that your situation is serious and complex.
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Symptom Management: Given your conditions:
- Pacing Activity: Continue to pace your activities and avoid sudden movements that can exacerbate symptoms.
- Stay Hydrated: Drink plenty of fluids, as hydration can help manage POTS symptoms.
- Compression Garments: Continue wearing compression garments as they can support blood circulation and may alleviate some symptoms of POTS.
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Accessing Coordinated Care:
- Investigate local resources for care coordinators or health navigators who can help you manage appointments and medical records.
- Consider reaching out to local support groups for conditions like Ehlers-Danlos Syndrome or POTS. They often provide valuable emotional support and can share coping strategies.
Next Steps
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Prepare for Appointments: Write down a concise summary of your health history and current medications. Bring this summary to your neurology appointment in March to aid communication.
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Explore Support Networks: Look into organizations or community health resources in Kentucky for potential case management and support groups related to your conditions.
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Self-Care Strategies:
- Continue your therapy and physical therapy sessions, as they are crucial for managing both mental and physical health.
- Use relaxation techniques, such as deep breathing exercises or mindfulness, to help alleviate anxiety during challenging times.
Remember, it's important to acknowledge your feelings and advocate for your needs. You deserve compassionate care, and finding the right support system can be a pivotal step in your journey. If you have further questions or need more specific resources, please feel free to ask.
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