Welcome

When I created this blog, I was "getting on" in my early sixties, hence the blog name. However, my adult daughter's eating disorder and co-occurring emotional dysregulation disorder and other co-morbidities - ongoing for about 33 years - became and was our focus as we attempted to help her get into recovery. By learning about, reflecting on, reading about, attending conferences and writing about eating and brain disorders, I created a place to blog what I've learned. I hope this blog will be of use to others, especially families of and adult sufferers themselves to help them get into recovery. I update posts from time and the update date will be present at the top of the post.

Sadly, my daughter passed away in early October 2021 mainly because her body became so malnourished that she was immunocompromised, contracted a severe infection that was not properly addressed during an earlier hospital stay the month before, and developed an overwhelming non-covid pneumonia following surgery to save her life. I believe she should have been able to receive palliative care but Arizona, our country, and even the professionals trained in the treatment of eating disorders, particularly anorexia, are not "there" yet. I address the issue of palliative care in a recent post below, initially written in November 2021. I am not a certified eating disorder specialist. I am an Expert by Experience and college-educated with a BA in Community Work with an additional certificate in a one-year program in Business Administration from the same institution.

I am passionate about all of this because, as Shakespeare wrote in The Taming of the Shrew, Act 4, Scene 3: "My tongue will tell the anger [and sadness] of my heart or else my heart, concealing it, will break. And, rather than it shall, I will be free even to the uttermost, as I please in words."[2016]

Travel Guide

If you're new to my blog, I recommend you begin on the right side and take a look at the "Of Note" offerings. Read Dr. Cynthia Bulik's recent published interview (5/4/22) "Rethinking Eating Disorders" if you want to print an easy-to-understand professional's expert opinion about anorexia for your family doctor or the therapist. [Early intervention is absolutely critical. For those whose eating disorder is categorized as entrenched or severe and enduring, read the editorial comment by Stephen Touyz and Philipa Hay for a new approach about treatment. It is possible for your loved one to recover! I have also attached a link here for additional papers on the subject of severe and entrenched eating disorders. If you are a family member or friend of an adult with an eating disorder and have been at this for awhile, I refer you to the posts within the title "Adult Eating Disorders and Recovery Tools" found in the Index on the right hand side of this site. As well, in the "Of Note" section take a look at those posts with an asterisk. If you're a parent and need support, look for posts in the Index about parent support or parent toolbox. In my opinion, the best book to buy, to refer to constantly and to share with members of the medical/psychiatric profession is "Sick Enough: A Guide to the Medical Complications of Eating Disorders" by Jennifer L. Gaudiani MD, CEDS, FAED. "Dr. Gaudiani aims to improve medical diagnosis and treatment, motivate recovery, and validate the lived experiences of individuals of all body shapes and sizes, while firmly rejecting dieting culture." I recommend two groups who will support you on your journey - F.E.A.S.T and the National Alliance for Eating Disorders. Both maintain websites and Facebook private groups.
Showing posts with label #SevereandEnduringEatingDisorders. Show all posts
Showing posts with label #SevereandEnduringEatingDisorders. Show all posts

Wednesday, July 31, 2019

An Infographic - A Visual Tool - to grab the attention of the Medical Team

Background:  After getting nowhere for a year, as I brought my family member (FM) to the ER and/or a local Crisis Center to be admitted (but FM summarily was discharged multiple times over my objections as the  Court Appointed Legal Guardian) in my attempts to grab the attention of doctors/psychiatrists of a local psychiatric wing of a hospital/crisis center, and even after, a year ago next month, arranging a consultation for the psychiatrists with one of the world's foremost researchers on anorexia - and getting a rejection of the opportunity -, and while continuing to watch my family member's weight slowly drop to a red flag danger zone, I resorted this past Spring to something that my son taught me.

Infographic Visual Tool:  My son is an expert in the communication of information through Infographics and I have observed that these tools work quite well. I plotted my family member's weight over a year's time, beginning in June of 2018, and presented the resulting chart during a team meeting at the hospital in May of this year. 

I thought I would share this idea in case someone else needs a visual to drive home a point. I used Excel to develop the infographic, plotting weight on the vertical axis and dates on the horizontal axis over the previous year to date.  The infographic also includes a few recent admit and discharge data points. It's a powerful visual and I recently learned that the message provided by the infographic was written into the official medical record!!!  Perhaps this kind of information would also be useful to gain support from the individual's Insurance Company.

[Obviously other factors were taken into account when FM was finally admitted in May for a longer stay because her weight was frighteningly low (low 70's) but even then, the remark of the ER physician was "she is awfully thin" [pause for several exclamation points !!!!!!!] but she otherwise noted that all her labs came back normal (meaning electrolytes) and then said the recommendation was to discharge FM.  My response was, long story short, to say "...she is dying and she will die if you do that...."]

In summary, the infographic reflects FM was discharged more than a year ago with a weight of just under 100 pounds but as time went on into the summer, fall and winter, as has always been the case because she has never been fully in recovery, her weight dropped, came back up a little, dropped more, came back up a little, dropped significantly, etc., etc.  In May 2019, FM was discharged at her insistence (Anorexia took over) at a ridiculously low weight only to drop again enough in two weeks to be rehospitalized. FM was admitted for another almost three weeks but again, at her insistence at a weight that was at least 20 pounds under a reasonable goal based on so much documentation and the recommendation of her PCP, FM was discharged again.    The decline, unfortunately, as I write this, is repeating.

Closing:  I am so grateful to Dr. Bulik et al whose research results have recently been published in an article written by @Sumathi Reddy the Wall Street Journal titled "A New Genetic Explanation for Anorexia" (see link) including findings on the genetic metabolic and psychiatric links, as well as to others who continue to push for a stabilized (ie for several weeks if not months) weight before assuming a person is safely into a recovery phase allowing for outpatient treatment.  Maybe, someday, doctors will receive more than 1-5 hours on eating disorders during their medical training.