‘The Month Of ME’ – in response to a challenge and in recognition of the important role the term myalgic encephalomyelitis (ME) has played and continues to play in this disorder, August, 2011 will be the ‘Month of ME’ on Phoenix Rising. We will examine ME’s role in this disorder throughout the month. All articles, blogs and posts produced by Phoenix Rising will only use the term myalgic encephalomyelitis or ‘ME’ unless ME/CFS or CFS is absolutely required. We encourage others to make this a “Month of ME” as well.
The cover of ‘When Something’s Wrong – How to Navigate the World of Health Care’ by ME patient Christina Caskey features a shot of a lonely gravel mountain road veering around a distant corner with only few rocks on the side to deter the unwary or unfocused traveler from plunging off the hillside….one false step and you’re in the drink.
Christina Caskey has definitely been in the drink. A healthy, physically active socially engaged woman – one day – out of the blue – she came down with myalgic encephalomyelitis (ME). Seventeen doctors and twelve different labs and several fights with the insurance company later she was much clearer about what had not happened but no clearer about what had happened. Chrisitina did find doctors who could help her and she has improved significantly since the dark early days of her illness six years ago and now she’s used her new energy to provide a guideline to help others.
“Organization Beats Chaos Any Day”
If there’s any phrase that exemplifies what this book is about it’s “Organization Beats Chaos Any Day”. Let’s face it – doctor’s visits of any type are not fun but throw in brain fog, a multitude of symptoms and a complex disorder most physicians don’t know much about and you have some real issues; not only does the patient have trouble communicating but the busy doctor may not be inclined to listen. The conundrum is that the patient needs to become a superb organizer and communicator at precisely the time the idea of organizing and communicating anything seems almost futile.
It’s at this critical intersection where the communication between patient and doctor often breaks down that Christina really shines. The book doesn’t say if Christina was working mother of four when she became ill or not but my guess is, with her passion for clarity and organization, she would have made a great office manager. She has a range of suggestions -from simple to complex – but I was taken by how even simple things such as creating insurance company and medical binders with the right categories could be immensely helpful even if they are in hindsight obvious.
Being unorganized with your medical data is more than a time waster – it’s an energy waster , a potential drainer of funds, and ultimately even a health concern. The last thing people with ME/CFS need to deal with are balky administrative medical matters or medication management issues or having doctors at cross purposes with each other. This book deals with these issues and more.
Christina doesn’t waste time – by the 27th page she’s already provided info on how to create Insurance/Medical Binders and forms for Insurance Information, Medical Providers, Symptom Calendars, Wellness Scales, a Medications and Supplement table and a Lab Results table. She used her symptom calendar , for instance, to realize that she always had a Herxheimer reaction 10-14 days after taking antibiotics or antivirals.
Chapter Three on Lab Visits includes such tidbits as “Making sure your doctor’s fax number is on the lab requisition form” – so the lab can send the results as quickly as possible and “Request that the lab be released to you as well as the doctor” – an essential need given how many doctors people with myalgic encephalomyelitis (ME) often end up seeing. There there’s the section on avoiding the ‘Colossal Crevasse’ – a sinkhole for lab results that must bear some resemblance to the “Land of the Missing Socks’.
In the chapter on Insurance companies Christina provides (along with some nicely honed black humor ) a bevy of suggestions. In one she notes that some insurance companies require a pharmacist’s signature if you’re using compounding pharmacy (but not apparently a non-compounding pharmacy. (Request denied Pending More Information!)
Perhaps the best advice she gives is to contact your State Department of Insurance agency – an entity I had forgotten even existed – – to help get wayward Health Insurance companies back on line. In one instance a year long problem was resolved in 30 days once her State agency got into the act.
There are also sections on Travel, Finding (and Rating) good hospitals, the Hospital Stay, Online help and finally an Afterword in which Christina provides some personal reflections on how acceptance, laughter and religion have helped her through her illness. I particularly liked a quote from Chuck Swindoll on attitude that states “I am convinced that life is 10 percent what happened and 90% how I react to it” and Christina’s realization that it became necessary, after her life was turned upside down, to train herself to look on the bright side of life and how much help that was.
A Chronic Illness Toolkit – This book is not about myalgic encephalomyelitis; ME was simply the disorder that gave Christina her entrée into a confusing, not particularly patient friendly medical system …this is a guide that anyone with a chronic illness can use.
It’s clear, though, that with a complex disease like ME you need to be more vigilant than ever in medical data management. (I can see ME doctors providing copies of the book to their patients – Please read this! ). Managing ME can be a complex matter and, quite frankly, there should more be courses in it.
I don’t think this book is complete – the medical system is simply too big and too complex for that and Christina plans to have updates – but it’s a great start on an important topic. An additional bonus is that all proceeds to benefit people and organizations working on ‘Infection Associated Chronic Fatigue Syndrome’.
(Ordering the book at the website will allow more funds to be provided to ME organizations). You can contact Christina here with suggestions on the book.)