In this unprecedented time, many organizations are pivoting to provide the same or similar resources electronically. The organizations who are having to adjust range from government, to non-profits, to public health, to for profit companies. Frankly, I’ve been blown away and significantly impressed at how breast cancer organizations have been able to continue to do … Continue reading Electronic Resources, LBBC
Reblog: Fibromyalgia Awareness Day: Quality of life impact
I’m sharing this blog, that I didn’t write, about an illness that several dear friends deal with. Read on ... May 12th is Fibromyalgia Awareness Day. The day I talk about Fibromyalgia More than usual to spread awareness and reduce stigma. A brief history of …Fibromyalgia Awareness Day: Quality of life impact
Compassion Fatigue
I was talking to a friend the other day about some frustrations with fundraising. She mentioned that it seems that some people are no longer exercised or stirred up about various issues in the world, particularly those of us who are continuing to die at a rate of 115-116 people every day in the United … Continue reading Compassion Fatigue
Statistics
I'm not a statistician and I struggled in the one statistics class I had to take in college. This is not about how to calculate or how to understand statistics as I'm so not the person to hand out that information. This post is to explore the uneasy relationship those of us with Stage IV … Continue reading Statistics
Experience applying for disability benefits
Disclaimer: I'm a lawyer in Florida only and this post is about my personal experiences applying for disability benefits. Nothing in this post or in any of my other posts should be considered legal advice. If you have legal questions, you should get in touch with a legal professional with experience in the issues you … Continue reading Experience applying for disability benefits
Experimentation Update
I’ve now been on the experimental combination of Piqray (alpelisib) and Kisquali (ribociclib) for an entire 28 day cycle and a handful of days. I missed some doses in the first cycle of Kisquali when I was hospitalized and in my efforts to figure out the best time to take both. No PET yet to … Continue reading Experimentation Update
Mental health and Metastatic Breast Cancer
Mental health and the ability to handle the emotional and psychological affects of living with a terminal disease is a tricky topic. There is still a general stigma in the community at large about mental health and seeking treatment for mental health struggles. I see this stigma far less within the metastatic breast cancer community … Continue reading Mental health and Metastatic Breast Cancer
Medical Treatment during a Pandemic, Part II
My first post, Part I, was all about my admission to the hospital after I’d been tested for COVID-19 and how weird it was. Medical treatment during a pandemic is not fun at all. Impersonal medical facilities are even more so when everyone you encounter is scared of catching something from you, the patient. Plus, … Continue reading Medical Treatment during a Pandemic, Part II
Grief and Love; Love and Grief
I’ve been staring at this blank screen for weeks. I want to write. I want, no, I need to write in order to get this grief out of my head/heart and into something more manageable. The fact that I’ve had a worrisome PET, that my new meds are proving complicated to handle, and the fact … Continue reading Grief and Love; Love and Grief
Surprise Billing, Part II
Let’s set the scene ... You have spent some time in the hospital, had a serious illness, and you receive excellent care, so you are able to come home. It takes a few days but you start feeling back to your normal. As you begin to exhale and get immersed in your life again, you … Continue reading Surprise Billing, Part II
No Half Measures 