Book Review- "Beating Lyme"
Topic: Book Reviews
“Beating Lyme: Understanding and Treating This Complex and Often Misdiagnosed Disease” by Constance A. Bean, with Lesley Ann Fein, MD, MPH; Amacon; New York; 2008.

This is a must read book for anyone who has Lyme, has been treated for Lyme, suspects their chronic ailments may be caused by Lyme, or who knows or loves someone who has or may have Lyme Disease.  

“Beating Lyme” is a helpful introduction into the facts surrounding Lyme Disease, its history, its often devastating symptoms, it's potential co-infections, it's frequent under-diagnosis or misdiagnosis; and the petty, mean-spirited, destructive and often arbitrary politics involved with its “official” diagnosis and treatment protocols established through the ISDA, the Infectious Diseases Society of America.

If you've ever wondered, “Whatever happened to the Lyme vaccine?” the troubling answer to that question can be found within this book as well.
   
For me personally, “Beating Lyme” was the most important book I've read this year. I lack health insurance and live in a state where people with Lyme cannot get Disability or medical help from the state. I live with untreated chronic Lyme and have done so since the mid 90's despite the fact I had a positive Western Blot Lyme test in 1994, whose results I was repeatedly told to ignore by the physicians I had seen. It couldn't be Lyme. I was told to ignore the test result and my symptoms, and they would all go away.  

My initial Lyme symptoms, which included Lyme Disease caused Mitral Valve Prolapse, and assorted other cardiac problems (suspected pericarditis, extremely rapid heart rates, abnormally slow heart rates, chest pain that sometimes required treatment with sublingual nitroglycerin pills, assorted types of arrhythmias, and skipped beats) which landed me in the hospital multiple times; along with extreme fatigue, muscle and joint pain, arthritis, swollen and painful lymph nodes, shortness of breath and lung problems, dizziness and lightheadedness, vertigo, digestive and swallowing problems, high suceptability to infection, were often downplayed and I was frequently belittled by my doctors and a few of the nurses. There were times when I was so weak and sick I could barely move. I was in my twenties then, and was 'reminded' on multiple occasions that women in their twenties- women of strong, moral character- simply did not become seriously ill. Worse, I had heart problems- a man's disease. Women, particularly younger adult women, simply cannot have heart problems, I was told. It simply didn't happen. So I was berated on occasion for having cardiac problems, accused of overdoing with the caffeine despite having the newly minted MVP diagnosis, and there were hints that I might be using drugs (I've never used or abused drugs, I've never used an illegal drug in my life), and that's what was behind my heart problems. Even their repeated blood tests that confirmed I wasn't consuming any caffeinated beverages and never took anything beyond Tylenol or ibuprofen, and the heart medications I was prescribed didn't quell those suspicions. The mindset was- I must have been at fault, I must have been doing something wrong to have a heart condition with serious cardiac symptoms. 

I have now lived for fifteen years now with untreated, chronic Lyme, which is a progressive and life-altering illness for me. I am one of the ones who eventually had the “fibromyalgia” label pinned on me even though I don't have the give-away FM symptoms of insomnia/sleep disorders and daily brain fog, nor do I have restless leg syndrome, yeast infections, dry eye/dry mouth problems, interstitial cystitis, ADD, etc., etc that are common with fibro. The state I live in will not provide Disability, or health care for the uninsured for those labeled with fibromyalgia either.  

Reading “Beating Lyme”, reading Constance Bean's struggles with her Lyme Disease diagnosis and treatment and excerpts of other patients' struggles with their Lyme was a major revelation for me. Here I was- mistreated and sometimes even outright ignored medically, my family members told to completely discount the seriousness and severity of the nightmare I had gone through (even though in the early days, I had been hospitalized with heart problems several times, and even spent several days in ICU!) and I still live with; but at least now I feel somewhat less alone with my personal struggles with this illness, as I see there are many people out there who have gone through and live with the same things I did and still do. My supposed “freak show” symptoms that couldn't and didn't happen to other people- not to people of good, strong and moral character- are sadly in fact the norm for a whole lot of us, and this doesn't make us morally weak or “bad” people. So for me as a medically ignored and untreated chronic Lyme Disease sufferer with no health insurance coverage, at least this book provides some long overdue vindication regarding the seriousness of the symptoms and the progression of my illness.

Book Review- "Life Disrupted" by Laurie Edwards
Topic: Book Reviews
“Life Disrupted: Getting Real About Chronic Illness in Your Twenties and Thirties” by Laurie Edwards, 2008, Walker & Company; NY, NY 

Laurie Edwards is a journalist and educator in her late twenties who has lived with chronic illnesses since childhood. “Life Disrupted” is about the delicate balance of having as full a life as possible despite chronic illness mixed in with hospital stays, doctor visits, medical testing and treatments. Laurie chronicles her story, as well as the stories of others in their twenties to mid-thirties who are living with chronic illness; managing college, careers, relationships, marriage and parenthood. Most of the patients profiled have been dealing with chronic illness since childhood. Laurie also shares her parents’ stories- they themselves have battled chronic illnesses throughout adulthood. 

This is an optimistic, hope-filled book, which has something to offer for anyone who has a chronic illnesses or who loves someone who does. While the main emphasis is on life for chronically ill adults in their twenties and thirties, this book is insightful for all chronically ill adults regardless of age who are struggling with work and career goals, relationships, family issues, and balancing marriage and parenthood with chronic illness.
 
One especially hopeful sign on the college education front is a growing number of colleges and universities are working with chronically ill students to develop coursework adaptations which will allow these students to be able to attend college and earn their degrees despite suffering from life-altering chronic ailments. 

The book ends with an appendix of resource websites in various categories including: employment, education, health insurance and advocacy, as well as sites for family members and chronically ill teenagers.
 
Laurie, her family and friends represent the best-case scenario, or at least the better-case scenario when it comes to managing life with chronic illness- they have access to quality healthcare and much needed specialists, they have health insurance coverage (most of the time anyway), they have employers who are willing to work with them to accommodate their health situations, or in the case of one woman she left her office job to start a small homebased business while having a spouse with a traditional job. The one person who was forced to leave her job due to her illness is married, so she has both financial support and health insurance coverage through her husband. Laurie and her friends may not be making as much money as they would if they were perfectly healthy, but they’re not living in poverty, are not going without access to decent quality healthcare, and aren’t mired down in the social services system. They’re not stuck fighting for Disability benefits or struggling to get by financially on the meager amount of financial support Disability gives, nor are they among the disabled/ill stuck on welfare. None are living with and are being supported by relatives or friends, or are part of the disabled homeless population. What we very much need in our society is for more chronically ill adults to have education/career/job/healthcare/relationship/family outcomes that are as positive, hopeful and productive as Laurie’s and her friends’ lives. 

Flawed Public Policy- Pitting the Chronically ill/Disabled Against the Disadvantaged/Undereducated Poor
Topic: Public Policy

One of the obvious problems with the use, or misuse, of the way Disability eligibility is determined can be seen in Carolyn Feibel’s “Disability City” articles, and this is a flaw that is very much present here in New Jersey- the SSA Disability Program has been transformed from a safety net for the chronically ill/disabled from all backgrounds into a version of Welfare II for the disadvantaged poor.  

While there are genuinely ill and disabled people from poor urban and rural areas on Disability, clearly others wind up in the program because it’s a stop-gap measure, a way to provide undereducated and unemployed people with an income, food, housing and basic medical care, without state, county and municipal governments actually bothering to put in the time and effort to help fix the problems found in poor urban and rural areas. 

Why bother doing anything to improve economically depressed areas and their people when you can dump them on Disability instead?

The problem is these recipients don’t all belong on SSI or SSDI, and would actually be better served with a combination of local healthcare programs, job training and job placement programs, financial aid programs for continuing education- be it in a trade or vocational school or a community college- and community based healthy lifestyle and mental health counseling programs.

Only a finite number of people are going to be granted Disability in a given year, and when these ranks are being filled by people who really don’t belong there, this is done at the expense of the genuinely chronically ill/disabled who very desperately need the healthcare and economic safety nets the Disability programs provide.  

Unearthing 'Disability City'
Topic: Public Policy

In June 2004, journalist Carolyn Feibel, then a reporter with the Herald News of Northern New Jersey wrote a two-part series Disability City- “Special Report: Disability City” and “Disability benefits more attractive than welfare for just getting by”, which exposed the 'culture of disability' in Paterson New Jersey, the city with the highest disability rate in the nation with 35% of working aged adults in Paterson on Disability- either SSI or SSDI.

Both articles can be accessed online through the Internet Archive Wayback Machine website: http://www.archive.org/web/web.php  by pasting the original article URLs onto the Wayback Machine homepage.  There is some sort of quirk whereby clicking on a typed link of these 'Disability City' Wayback pages (from a source such as this article) won't always take you to the proper Wayback archive webpage. Instead you'll reach an error page. I'm not sure why this glitch occurs, but that's why I suggest you CC&P the old NorthJersey URLs into your browser, then go to the Wayback site. You can then successfully save the archived articles's URLs directly to your bookmarks file for future reference without further accessing difficulties.

Special Report: Disability City. The Herald News. http://www.northjersey.com/page.php?qstr=eXJpcnk3ZjczN2Y3dnFlZUVFeXk1NyZmZ2JlbDdmN3ZxZWVFRXl5NjU0MTY5OCZ5cmlyeTdmNzE3Zjd2cWVlRUV5eTI=

Disability benefits more attractive than welfare for just getting by. The Herald News. http://www.northjersey.com/page.php?qstr=eXJpcnk3ZjcxN2Y3dnFlZUVFeXkyJmZnYmVsN2Y3dnFlZUVFeXk2NTQxNzAx

These now largely forgotten but insightful articles offer some food for thought regarding the public policy implementation of social service and medical care safety nets for two very distinct and sometimes overlapping groups- the chronically ill/disabled and the disadvantaged poor; and how both groups are often being failed miserably by the system. I'll be starting off this blog by examining some of these issues in greater detail.

Welcome to Junco's blogworld

This blog will be dedicated to examing socio-economic, health care and daily life issues, and public policy implementation concerns in relation to chronic illness, and the chronically ill and disabled.