The story below is from our July/August 2023 issue. For more stories like it, Subscribe Today. Thank you!
Editor's Note: You can read our Chronic Illness online pairing, with more advice from Dr. Christy Arthur, HERE.
Patients share their struggles and tips to living fully even in the face of complicated medical situations.
Editor's Note: Learn more about chronic illness and much more in our podcast medical episode, featuring Dr. Christy Arthur, RevIVe Hydration Roanoke and Top Docs 2024 cover winner Dr. Al Hagy, Jr.
According to the Center for Disease Control, six in 10 adults in the United States live with a chronic disease and four in 10 have two or more. Chronic disease is a condition that persists for a prolonged period such as neurological and heart diseases, diabetes, cancer and autoimmune disorders as well as mental health issues.
Courtesy of Mary-Rosser Furr
Mary-Rosser Furr created a program to help others with self-care and advocacy after living with chronic illness.
Living with chronic illness is challenging as it affects all areas of one’s life. It often requires frequent medical visits, ongoing medication and lifestyle changes. It can impact mental health and relationships. Managing chronic illness requires a holistic approach that addresses the physical, emotional and social aspects of one’s life.
With the prevalence of chronic illness, you probably know someone who is struggling. Struggling to find a reason they don’t feel well, struggling to find a treatment or struggling to manage their illness.
Mary-Rosser Furr was born with multiple rare diseases and genetic anomalies. Then, she acquired a chronic illness that resulted in a cascade of symptoms that did not fit an easy diagnosis. Over the years, other issues came to light. She is also a long-term cancer survivor.
As a result of her own struggles, Furr founded Sitting on the Edge of Tomorrow, a chronic illness and rare disease self-management program.
“What makes my program unique is a shared community of resources, education and support for people who have chronic illness and rare disease to become self-managers and self-advocates in their personal health and well-being.”
“If you have symptoms that are a puzzle that needs an answer, then self-observation is key,” she says.
Furr says that tracking symptoms, paying attention to your personal environment and activities, along with a comprehensive understanding of your current and past well-being and medical history can help guide you to a diagnosis.
Dr. Christy Arthur of Ultra Care Health emphasizes having an accurate history of what is happening to your body with a timeline and detailed description of symptoms as well as what made them better or worse and what treatments you have tried.
“Know your family history because that could be a clue for doctors,” Arthur says. “And, if you have a hunch about what it could be, don’t be afraid to share that. Your own intuition can be valuable, but also be open-minded.”
Robyn Flint of Bedford County saw 12 specialists after having issues with memory fog, fatigue, joint pain, enlarged lymph nodes and unexplained small fiber neuropathy. At one point, she was thought to have lymphoma, had several surgeries including a lymph node biopsy and was ultimately diagnosed with Mast Cell Activation Syndrome (MCAS) about eight years ago.
Courtesy of Robyn Flint
Robyn Flint
MCAS causes a person to have severe allergic reactions that affect several body systems including the gastrointestinal tract, heart and neurologic systems. Severe abdominal pain, difficulty breathing and a low pulse are a few possible symptoms.
The treatment involves treating the symptoms and maintaining medications to keep potential issues from arising. Flint notes that her symptoms are not the same as what someone else may experience so what helps may be different.
“I see a specialist at UVA yearly for the MCAS and other physicians for neuropathy and other symptoms,” Flint shares. “My recommendation is to never give up. When doctors can’t figure it out, keep in mind that only you can know if something isn’t right with your body so keep pushing. Find a specialist that works with other patients with your diagnosis.”
Flint says the disease has changed her entire life and negatively affects her every day. “There is no cure, so I have had to learn to change my life to meet it where it is.”
Treatment has included physical therapy, pulmonary/cardiac rehab, using a CPAP nightly and seeing her cardiologist, pulmonologist and primary care physician every six months. She takes medications twice daily, exercises and stays mindful of her carbohydrate and sugar intake.
“One of the biggest helps has been to just keep living life and staying active,” shares Brozovsky. “When I was first diagnosed, I withdrew and felt sad. Then I started physical therapy that forced me to get off the couch and leave the house. The staff showed me that my diagnoses were not a death sentence, and that living life was my best treatment. “
Courtesy of Casey Brozovsky
Casey Brozovsky and her husband, Joseph, celebrating at their daughter, Laurel’s, 5th birthday party in Jan 2023 (taken by Megan M Clark Photography in Roanoke). “I never thought I’d see her turn five,” says Brozovsky.
She shares that initially things will change when you are diagnosed with a chronic illness.
“Give yourself time to grieve and process. Then, be open to small changes,” she encourages. “Talk to your doctors and ask them for websites and information to educate yourself. Stay in community with others; do not isolate yourself. Ask lots of questions. Put into action the recommendations from your care team. Every six months, shop around for medication costs.”
In August of 2021, Nicole Cooper noticed significant breathing issues and her doctor began treating her for wheezing. Then she developed random, itchy rashes on her legs and hands. It was suspected to be a reaction to the new medications, so her medication was changed, and her doctor referred her to a pulmonologist for a chest-rattling cough. Nothing conclusive came from that.
A trip to the ER due to anaphylaxis finally yielded a diagnosis of Alpha Gal Syndrome (AGS) after ruling out a heart attack and other possible causes. Cooper said she never knew she had been bitten by a tick and always used bug repellent, so was surprised by the diagnosis that came two days before Christmas.
“Life changed quickly and dramatically,” she shares. “I learned that AGS is about so much more than not eating meat. I was fume reactive, meaning when meat was cooking on a grill, my breathing took a steep decline.”
She had to carry an Epi-Pen and a rescue inhaler. Her laundry detergent, fabric softener, body lotion, cosmetics, gel-coated OTC meds and even some bottled waters were no longer safe for her because they contained mammalian byproducts or were processed through systems that did.
“It was overwhelming. It was expensive. It was exhausting. And it was sad.”
On top of it all, Cooper still felt very sick. There is no cure and no official treatment for AGS, other than avoidance of allergy triggers. It could take weeks or months for her immune response to settle back and allow her to feel normal again.
Courtesy of Nicole Cooper
Dr. Scott Commins at UNC-Chapel Hill, a physician at the forefront of Alpha-Gal Syndrome research, declared Nicole Cooper in remission.
Cooper tried an acupuncture treatment called Soliman Auricular Allergy Treatment (SAAT) with Deb Farley at Acupuncture Works in Lynchburg after reaching out to others who had tried it. She also paid close attention to how her body responded to things she did and ate. In February of 2023, she was declared in remission.
One of the challenges of chronic illness is that it can often be hidden, making it difficult for others to understand the severity of the condition. Individuals with chronic illness may appear healthy on the outside but are struggling to manage their symptoms, maintain their health and stay positive.
Sometimes, there is a stigma attached to a disease, especially if it is a mental condition like depression. At times, depression can arise because of dealing with other chronic conditions.
Encouragement and help from family and friends can be essential for those living with chronic illness. Having a support network can help individuals manage their symptoms and cope with the emotional and psychological challenges they face. Support groups and online communities can be a source for resources.
Dr. Arthur says get as much self-care as possible. “Anything that keeps you in a positive mindset is crucial.”
Self-care is a key to managing chronic illness. This includes lifestyle changes such as eating a healthy diet, regular exercise and relaxation and avoiding unhealthy habits such as smoking and excessive alcohol consumption. It is also important to keep up with medical treatments and check-ups.
Advocating for yourself or your loved one and working with a healthcare provider to develop an individualized care plan that includes medical treatment, lifestyle changes and social support can lay the foundation for a fulfilling and meaningful life after a diagnosis of chronic illness.
The story above is from our July/August 2023 issue. For more stories like it, Subscribe Today. Thank you!