Posts Tagged ‘living with chronic illness’
NIH Announces Precision Medicine Initiative
Research tends to neglect ME/CFS and FM – until right now. Precision medicine is the emerging scientific idea that medical treatment can and should be maximally efficient by tailoring medicine and healthcare to individual circumstances. Current research studies, however, do not have the size and diversity necessary to produce enough statistical power for individualized treatments.…
Read MoreA Consensus-Driven ME/CFS Clinician Coalition Takes Shape
On March 2-3, 2018, the Bateman Horne Center hosted an exciting summit of leading U.S. ME/CFS clinicians who came together to share their pearls of wisdom on diagnosis and treatment in order to improve ME/CFS clinical care and refine more precise research targets. The meeting was remarkable for the ambitious nature of the agenda, the enthusiastic…
Read More“Unrest” Panel Discussion
Jen Brea’s movie, Unrest, is bringing attention to the struggles that people with ME/CFS face. This award-winning film is available on Netflix, Amazon, and your local PBS station, and if you haven’t seen it yet, block out some time to take a look. Jen turns an unflinching camera on her life and the lives of…
Read More“Normal Town” by Rebecca Adams
One morning three years ago, I woke up early determined to do something “that normal, healthy” people do. I donned a t-shirt and sweats, went to the gym, and jogged on the treadmill for 20 minutes. No big deal, right? Think again. The aftermath of my 20 minute stay in “Normal Town” earned me a…
Read MoreKeeping Spirits Bright: Managing the Post-Holiday Letdown
Some people, especially those with chronic disease, experience depression and/or seasonal affective disorder (SAD) after the holidays are over. Dr. Stuart Drescher, a psychologist experienced in working with patients with chronic diseases including ME/CFS and Fibromyalgia, gives tips on how to manage the letdown that often occurs in January and February, when the holidays are over and the days seem dark and dreary.
Read MoreWhen Mommy Can’t Dance: How to Be a Chronically Ill Mom
It’s a hard to be a sick mom. For most mothers, a few days of illness may mean a back-up of laundry and a night or two of frozen pizza or cold cereal for dinner. For those of us moms that are chronically ill, it’s a whole other ball game. Certainly we have to adapt, get creative, and employ as many mom hacks as we can (i.e. Amazon prime, grocery pick up, self-serve kid snacks, and yes, we still have an above average number of cereal dinners). Beyond the physical demands and limitations, however, are the mental and emotional obstacles that we face. The mom guilt is present enough when you are healthy; it can be even more crushing when you are not.
Read MoreNutrition: How Food Choices Impact How You Feel
The Whole Sisters (Nan Jensen and Nicole Bangerter) shared their journey with chronic illnesses at the September education meeting. View this presentation to learn about how food choices can affect symptoms. Visit their website for ideas on healthy food choices. Nan and Nicole discuss the importance of organic choices, the “dirty dozen” and the “clean fifteen”. They share tactics to develop self awareness and guidelines for reducing symptom presentation including recipe ideas.
Read MorePatient Voice – Meditate to Find Peace
Three years ago, Megan Hastings began most mornings with a quick run and some meditation. Today, the effects of her illness make running impossible, but she finds she can meditate to bring comfort and peace. The practice helps her to reduce stress, increase self-awareness, happiness and acceptance. Megan, mother to three and devotee to her best friend, has a…
Read MorePatient Voice – Look For Surprises
Still reeling from her diagnosis, Nicole shares how three surprises took her down a path that led her to help, hope and BHC. Nicole Paolucci Rabanal is a wife, mother, friend and physical therapists from Steamboat Springs CO. Upon returning to health she looks forward to living her life fully again as a wife, mother,…
Read MoreLiving With a Partner Who Has ME/CFS or FM
Chronic illness and marriage is a complicated combination. It’s rare to see or hear a healthy spouse’s perspective on their partner’s disease because it is a topic that can be very difficult – as much for the one speaking as for the one hearing it. With an estimated divorce rate as high as 75% among…
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