Caregiving and Navigating Education with Disability
Beth
State: North Dakota
Congressional District: ND01
Diseases
Cancer, Chronic Pain, COVID-19, Endocrine Disease, Gastrointestinal Disease, Genetic Disease, Heart Disease, Immune Disease, Kidney Disease, Mental Health, Rare Disease
Issues and Challenges
Beth has encountered: Access to Expert Providers, Access to Medicine, Copay Issues, Insurance Issues, Medicare / Medicaid Issues, Mental Health Access, Rare / Underserved Disease, Surprise Billing, Abuse (Mental, Physical, Elder), Addiction / Substance Abuse, Caregiving, Disability, Discrimination (nonmedical), Gaslighting, Invisible Illness, Job Insecurity / Loss, Oral Parity, Prior Authorization, Social Security Disability, Transparency in Health Care
My Story
Our story, my families and mine, has been a long one. The last twenty-three years I have been carepartner/caregiver to my immediate family members. Three years into my marriage, my husband became very ill. We had just relocated to a new community, had secured wonderful jobs, and we had a precious daughter. Our lives were 'on track'. Than my husband became ill. It was frightening and surreal. Finally, after multiple tests, hospitalizations, procedures my husband recieved a diagnosis of herediatry pancreatitis (PRSS1). A few months after my husband recieved his diagnosis my daughter became very ill. We, in a way, were very fortunate. I knew that there may be a chance that our daughter would also have the disease. I did not want to go through the same issues we went through for my husband so when we sought out a new pediatrician in our community we looked for a pediatrician with at least some knowledge of this rare disease as well as a pediatrician that believed in partnering. I had planned on interviewing multiple pediatricians but the first one I visited was a God send. He sat and listened to all my questions and concerns and had some knowledge about the disease.
We wanted another child but were very concerned that our next child would also have PRSS1. After many consults we decided to have another child. Everyone we consulted indicated the probablity of this was unlikley. Unfortunately, my son was also diagnosed with PRSS1.
My husband's disease advanced to pancreatic cancer. He died, not due to the cancer but due to a medical error during a surgical procedure. I pleaded with his physcian to keep him, but they assured me he justed needed to heal. He had sepsis. The next day, he was admitted to the hospital and stayed until his death.
My kids have both had an Auto Islet Transplant Total Pancrectomy (AITTP). It is a surgical procedure that removes the pancreas, spleen, half of the stomach as well as a few additional small organs. The islets from the pancreas are placed in the liver. This transplant was to provide a better qualift of life for them as well as decrease the liklihood of getting pancreatic cancer. Unfortunately, they both had major complications. For those with complications, including my children, there was and still is a lack of aftercare and because their anatomy was so radically different from others, it was hard to access care. Many of the doctors they saw did not have understanding of their anatomies, and instead of being willing to learn, they were often blamed for their issues. One physcian told us our kids shouldn't have anymore issues because the 'pancreas' had been removed. The multiple issues they had; PRSS1, AITTP, CDiff, Type 3 Diabetes, Atrial Tachycardia, chronic pain, dental (losing teeth due to health), chronic pain, depression, anxiety, CPTSD medical trauma to name just a few, made care difficult. Care was not coordinated, physicians did not consult with each other, labels were given. My frustrations spurred me to co-create with several other mothers, the Childhood Pancreatitis Foundation.
While my husband and children at times recieved compassionate and competent care, for the most part, it was a struggle. As a carepartner and caregiver I thought my focus would only be on caring for those I loved. Attending to THEIR needs. Instead, I found myself navigating a broken non-system of care.
My particular areas of interest is ability to access care for chronic pain, 504 and IEP accessibilty for kids that have rare or complex health issues, medical trauma, oral health coverage, cost of medications, patient centered care and caregiving.
My Motivation and Inspiration
My husband and my children are my inspiration and my motivation. Along our journey, I made mistakes as a caregiver and carepartner. These mistakes greatly impacted our entire family. While I have forgiven myself, and my family has given me grace, I am motivated to assist others in their journey navigating the healthcare system.
I want patients and caregivers to be partners, I want them to know that their voice matters. Healthcare system has become so complex. In the past, I took many calls from parents or patients with PRSS1 or other complex health issues, trying to assist them in navigating all the hoops and barriers that present themselves. Recently, I have recieved more and more calls from parents and patients with non-complex health issues.
While my husband and kids will always remain my foundational 'motivation', my motivation has expanded. Our health care system is broken, and the burdens of the broken healthcare system fall first at the feet of patients and caregivers. Physcians and other healthcare professionals are also impacted. As a nation we must create a better healthcare system. One that is patient centered. While patient centered seems to be a popular 'buzz word' in healthcare, I have yet to truly see it implemented. Those that have chronic pain, like my children, or complex or rare diseases often struggle to get accessible, compassionate care for so many reasons. We need to do better. I never want another family to experience the harm we did.
Note: for some reason would not allow me to cut paste my information my twitter handles are @purplemamabear, @navigationsSoC I have a website that will launch at end of January or start of Febuary.
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