I've always valued my doctor/patient relationships, but never more so than when I was faced with what I learned was a rare disease. The distractions of the healthcare delivery system may have contributed to my 7 1/2 month delayed diagnosis... Read more →
I'm sharing a full press release because it is important and because I want my peers with rare diseases to get the medications they need. Those with Rare face a multitude of challenges, but hopefully we will begin to start... Read more →
Yesterday, I received a press release that caught my attention in a significant way. It is primarily due to the fact that I'm a recipient of the generosity of blood and plasma donors. In addition, along my journey and participation... Read more →
When I decided to become a hospital administrator at 17 (who does that?) I wanted to eliminate barriers and overcome challenges so that nurses and doctors could provide better care. I guess I was advocating for patients my entire career,... Read more →
Years ago as a blogger, physicians and a few other clinicians found me and shared their books. Today, patients and their caregivers find me. Not in Vain is a daughter's advocacy in honor of her mother and her experience with... Read more →
Rare conditions, syndromes and diseases can include a really long and winding road; especially during the diagnosis period. Rare doesn't mean there isn't a diagnosis, it just means more thought and referrals for second opinions or referrals to specialists are... Read more →
Effective hospital risk managers and executives, learn the importance of communication when it comes to preventing most lawsuits. Clear communications that can be acted upon make for more efficient and effective workplaces, but also better quality and safer care. But,... Read more →
A few years ago, I read about the life and work of Hildegard von Bingen (c. 1098 - 1179), a German nun and scientific/medical writer. She began using the herbs grown in her monastery garden to aid those she cared... Read more →
This guest post from Nightfall (a cloud-native data loss prevention solution) is written for organizations that partner with those in the healthcare industry, but I share this post to help educate consumers. One reason is I often hear "you can... Read more →
Too many consumers of health care services feel stuck. They know something is wrong, but their physician (or another clinician) doesn't find anything or suggests a diagnosis or treatment that just doesn't seem to fit. While we don't want to... Read more →
Medical errors, delays in care, bias and misunderstandings are most often the result in communication failures. In fact, most lawsuits filed by patients and/or their families are the result of communication issues that sometimes lead to poor outcomes. This is... Read more →
Cannabinoid products (CBD) are appearing everywhere and in different forms. We can find salves, chews, gummies, bath bombs, oils, concentrates and beverages on store shelves and online. While high quality CBD can be effective in addressing some of our health... Read more →
These days there is a great deal of buzz about hand sanitizer. There are options to the traditional alcohol based products, or those you can make from home. One intriguing option is Clean Well, because my skin is really dry.... Read more →
I was recently asked how did I learn to advocate for myself as a patient. This made me reflect on my career in health administration, where I recognized the importance of patients advocating for themselves early in my journey. In... Read more →
Tis' the season of holidays and the giving of gifts. But, what do you get for someone with functional limitations caused by injury, chronic illness or aging processes? This year I've been keeping an eye out for a few items... Read more →
I've been a delinquent blogger again, but have some new ideas.... and a few books to review. One of these books is "We'll Get Through This Together". It reminds me of the power of pet therapy in the hospital or... Read more →
"Joy and woe are woven fine." - William Blake There is a wonderful book for caregivers that offers expert advice ... from a caregiver. It is focused on her experience caring for someone with Alzheimer's, however, the experiences and advice... Read more →
A little over two years ago I started researching tools to help me stay active in spite of new functional limitations. I looked for products to help me perform activities of daily living as independently as possible. As I progressed... Read more →
It is commonly reported that Guillain Barre Syndrome (GBS), Acute Inflammatory Demyelinating Polyradiculoneuropathy (AIDP), Chronic Inflammatory Demyelinating Polyradiculoneuropathy (CIDP) and other variants are rare conditions. Data on the numbers of cases diagnosed are used to create rates among the general... Read more →
Summer brings heat and dryness that can be especially challenging to those with chronic illness and/or undergoing treatments and care processes. There are a few products that I've added to my personal lists of essentials for the summer. If you... Read more →
Change is good
Social Media Tools