Cure Unknown by Pamela Weintraub
Topic: Book Reviews
“Cure Unknown: Inside the Lyme Epidemic” by Pamela Weintraub, St. Martin's Press; New York, New York;  2008. 

“Cure Unknown” is another must read book about the real science, real required medical care for patients, and the ongoing research behind Lyme Disease and its related tick-born co-infections and how it all has been greatly obscured and even buried due to politics, conflicts of interest, and narrow-minded thinking on the part of some well-connected doctors and medical researches who sadly have too much clout within the medical establishment and the government. This has been done at the expense of Lyme patients, their families and the devoted doctors and researchers on the front lines of Lyme patient care who know some uncomfortable truths about this not fully understood and very stubborn bacterial disease.

Ms. Weintraub is another on the list of journalist-patients to research and write about her and her family's illness after suffering for years with inadequate care due to the fact efforts are being made to stifle the true number of Lyme cases in this country and thus deny sufferers full and proper medical treatment. Lyme is the only disease in this country where it is deemed fully acceptable to deny patients much-needed medical treatment to make them well, or to at least slow down the progression of the more stubborn cases of the disease. It is the only disease where governmental bodies have placed limits on the duration of antibiotic therapy and where state medical boards actually attempted to revoke, or did revoke, the medical licenses of doctors who did their jobs- treating their Lyme patients for as long as it took them to get well. 

This book is also important reading, and food for thought, for anyone involved in the current explosion in the diagnosis of “fibromyalgia”, whether they are working in the fields of medicine or social services, or they are a fibro patient or the friend or relative of someone diagnosed with fibro, especially if they have doubts or questions regarding the accuracy of the fibromyalgia diagnosis; as fibromyalgia, (formerly known as muscular rheumatism and later fibrositis) had its illness definition and symptoms list greatly expanded to include symptoms often found in late-stage and chronic Lyme (sometimes erroneously called Post Lyme Syndrome). Fibromyalgia has become such a fad diagnosis of late that it seems to be a catch-all label which covers a broad range of medical conditions- including Lyme disease- illnesses whose main symptoms include chronic fatigue, and widespread muscle and joint pain.  A somewhat similar occurrence has happened on lesser scale with late-stage and chronic Lyme being incorrectly labeled as Chronic Fatigue Syndrome, Multiple Sclerosis, or Amyotrophic Lateral Sclerosis (ALS a.k.a Lou Gehrig's Disease).  

The Myth of Chronic Illness as a a??Blessinga??
Topic: Life With Chronic Illness

Every so often I read essays online about this, written by chronically ill people, and I know this has been a chapter subject in at least one book on living with chronic illness- the absurd notion of chronic illness as a “blessing”, or a 'blessing in disguise'.

The writer, usually female, is still able to live a middle class lifestyle despite her illnesses. She suffers from one or more chronic ailments of the invisible illness variety, but she is lucky enough to have health insurance coverage either privately through her spouse or through Disability, and has decent and caring doctors who do a good job at manging her conditions. She is happily married to a nice, understanding and patient guy who is earning a good income- hence she doesn't really need to work, so her inability to do so anymore is a moot point. She has amazingly understanding and supportive family members and friends, and a large extended illness support system. And she gushes about how “blessed” she and everyone else with chronic illnesses is. To her, chronic illness gives one 'proper prospective' of what really matters in life, and supposedly all that matters in life is having great interpersonal relationships. It's not about the practical issues like money, jobs/careers, raising a family and/or caring for aging family members despite being chronically ill, having decent quality housing, having access to consistent and decent quality medical care, being able to own and maintain a reliable car if one can drive, being able to save for the future, having more of a purpose in life than playing at being the blissed-out yet ill housewife (if one is married). She claims that illness is really a blessing in disguise. If she's a religious type, life with chronic illness will be a spiritual matter that's part of a greater 'Divine Plan'.

Oh, please. Get real.

The reality is, especially here in the United States, developing life altering/disabling chronic illnesses (especially is you're single and/or female) often equates moving from a stable middle class or working class lifestyle to the world of poverty and potential homelessness, and leads to an overall diminished quality of life. People who are able to remain in the workforce often get stuck in job ruts as they need to stay with an employer where they can still get health care coverage, because they are uninsurable on their own. For those unable to work in the traditional workplace, transitioning to a telecommuting job is often difficult at best. Getting on Disability is extremely difficult, and many chronically ill/disabled people who very much need Disability coverage never get it. Instead they either wind up living on welfare until the welfare reform term limits kick in, or they rely on their spouse, lover, family or friends for housing and financial support. Some wind living in welfare hotels, or end up as members of the disabled homeless population, living in homeless shelters or out on the streets.

Housing for the disabled apartment renter may mean relocating from their nice, safe and clean neighborhood into a public housing apartment building located in a dirty, dilapidated, drug and crime infested neighborhood where burglaries, car thefts and break-ins, muggings, rapes and shootings are the norm. State Medicaid programs are being gutted constantly, so far too many chronically ill/disabled people wind up with extremely limited or no access to decent quality medical care. Some community hospital clinics are so awful, have such substandard and poor quality care, that their patients would be better off being treated by their local veterinarians.

Love relationships and marriages may break up when one partner becomes chronically ill, and the healthy one loses the ability to handle the stress and strain associated with caring for their ill partner. Personal and professional goals, dreams and ambitions often go unfulfilled. Family members and friends often don't 'get it'...and some will never understand what life with chronic illness is like, regardless of how many times you try to explain your daily struggles and hardships to them.

Where is the “blessing” in that?

Patients Like Me
Topic: Life With Chronic Illness

Patients Like Me http://www.patientslikeme.com was recently profiled on the CBS Nightly News with Katie Couric and has been the subject of print news articles.

This website is a place where patients with certain chronic diseases, including progressive illnesses- some fatal- can chart their symptoms, illness progression, medical treatments and other means of coping with their conditions. The information they provide, including which medications they use and how well they help are shared with pharmaceutical companies and medical researchers, minus the site members' personal real life information- real name, location, etc.

 

Members can track progress of others members, and see which medications and therapies are the most helpful for the members of their illness community. There are sections that list the major and lesser symptoms of each illness and track the number of members who report each symptom. There is a section devoted to medical research studies and news as well. The Patients Like Me site has a limited selection of chronic conditions at present, but will be expanding to cover more illnesses.

Gender Segregated Medical Care
Topic: Medical Care

It can be difficult enough finding adequate and decent quality medical care, especially if you're uninsured, but it's worse when you're female and you're stuck dealing with gender segregation in terms of medical care, treatment, and diagnoses.

This is something you're more likely to come up against if you're a female of childbearing age, or are menopausal or immediately post-menopausal and your community hospitals and clinics are financed in such a way where women's health care greatly emphasizes ob-gyn care at the expense of other medical care. The protocols may be such that female patients' symptoms are either pretty much automatically preliminarily diagnosed, or are sometimes outright “labeled” as being gynecological and/or hormonal in origin without medical tests being run first, regardless of the true cause(s). The fact that a woman's symptoms or previous diagnoses don't point to something gynecological in origin becomes irrelevant. And non-gynecological illnesses and medical conditions may be de-emphasized or outright ignored, even when this is done to the detriment of the patient. Suddenly you are reduced to being medically viewed as just a walking and taking uterus and set of ovaries. What is going on with your cardiopulmonary system, musculoskeletal system, digestive system, etc., is irrelevant and doesn't matter.

Gender segregated care can also include harmful medical stereotypes- women of child bearing age can't and don't develop heart conditions and can't have heart attacks, women in their twenties and thirties who develop illnesses that sap their energy are just neurotic whiners and complainers, medical problems found in women their forties and fifties are all related to or are caused by peri-menopause and menopause, and the like.

Not all women who encounter gender segregated medical care are uninsured patients going to community hospital clinics. This happens to insured women as well. I knew someone who had insurance and suffered from several worsening conditions which were incorrectly blamed on peri-menopause, then menopause, which did eventually make her so weak and sick that she required hospitalization and a lot of care afterward.

 But it is indeed worse when you lack health coverage and you're stuck dealing with spotty access to medical care, while hoping to avoid gender segregated medical care when you do see a doctor..

The Poor Have Medicaid, The Chronically Ill/Disabled have Disability, and Other Popular Myths
Topic: Public Policy

About forty-seven million people in the US lack health insurance coverage. I wonder how many of these people are chronically ill/disabled who can't get on Disability even though their medical conditions are on the Social Security Administration's list of qualifying disabling conditions? How many would be or should be able to qualify for Medicaid through their state, but can't because their state gutted their Medicaid program, or because they are childless or have grown children and live in a state where Medicaid only covers families with minor children? 

For far too many of the chronically ill/disabled the idea of Disability serving as a safety net is a joke and a hoax. I wonder how many people in this country who have qualifying disabling conditions are being denied Disability and are instead shunted onto Welfare, their health conditions largely ignored? 

In how many states have the rules and “games” regarding Disability eligibility become downright cruel for those suffering from life altering medical conditions? How many people are living with untreated and unmanaged conditions which are being allowed to worsen, which can include living with chronic pain and discomfort, that degrades and destroys their quality of life and will ultimately shorten their lifespans, all unnecessarily? 

I live in a state where the rules are rather strict and stingy regarding who can qualify for Disability. A majority of the illnesses listed on the Federal SSA list of Disabling Conditions don’t apply in this state, and a number of them are completely ignored when it comes to the state Medicaid program, which is one of those only-for-families-with-minor-children set-ups. The ‘unofficial’ rule, the 'game' you're expected to play for Disability eligibility is: Working aged adults who become chronically ill/disabled, who aren’t either HIV+, or terminally ill and expected to live no more than 12 months, are basically expected to have themselves “diagnosed” with some type of mental illness in order to qualify for Disability. That’s the way it goes. Either fake a mental illness or you likely won’t be able to get on Disability. It's the way the game is played. So it becomes decision making time, play the game and fake a psychological/psychiatric problem, or go without care. Yeah, it’s a tough choice, but it’s a game some of us won’t play, so you learn to go without and have extremely spotty access to the most basic of medical care even though it’s to the detriment to your health.

Is it even Federally Constitutional to have a State’s Disability system set up this way, especially considering there are legal implications involved to a mental health diagnosis that don’t exist when you’re talking about all other illnesses?

Do an excellent job at faking a mental illness and worst case scenario- you’ll wind up in a locked psychiatric ward, heavily drugged…even worse- you could be judged mentally incompetent. On the other hand, do a great job at faking a bad back and the worst that will happen to you is you’ll have an MRI, be given cortisone or a pain killer, and you’ll undergo physical therapy. Big difference there, isn’t it? 

What exactly are the medical and legal implications to being diagnosed as too mentally ill to work- too mentally ill to be a self-supporting, fully functioning member of society? Obviously these issues must be awkward enough for the genuinely mentally ill to deal with, but what exactly are people who are faking a mental illness in order to get on Disability because they cannot get on it via their true medical conditions really getting themselves into?

When people fake a mental illness for Disability eligibility, do they wind up having a Psychiatrist as their assigned Medicare/Medicaid primary care physician? Are they less likely to end up seeing the specialists they genuinely need, such as a rheumatologist, an orthopedist, or a cardiologist? Are they pushed or forced to take psychotropic drugs that they don’t really need and shouldn’t be taking in the first place, even if they experience negative or uncomfortable side-effects? Are they more likely to be unnecessarily placed on tranquillizers? Are they more likely to have their real medical conditions ignored- improperly or inadequately treated, or not taken seriously- because of their mental illness status? Do they lose some of their autonomy and decision making abilities regarding their medical care in ways that don’t happen to those diagnosed with other illnesses? Can they, under certain circumstances, lose their right to refuse certain types of treatments or therapies because of their mental illness label? 

Does anyone in State government who pushes chronically ill/disabled people to have themselves diagnosed with faux mental illnesses in order to qualify for Disability ever pay attention to what the consequences are for these people? How do these consequences play out when the disabled person ‘faking’ a mental illness is young and/or very much undereducated- someone not fully understanding of the gist of these implications? 

Why is it often easier and faster to be granted Disability for mental illness than other medical conditions? I'm not talking about serious mental illnesses like schizophrenia, or severe cases of post traumatic stress disorder diagnosed in soldiers returning home from war... It's much easier for people in some states to get on Disability with a general depression or anxiety diagnosis then for those with painful and disabling rheumatological, respiratory, and cardiac conditions. Yes, I understand that some people have such severe forms of depression and anxiety that they cannot function properly at all in their lives, cannot function well enough to hold down a job; but is it fair to have a system where any mental health issue label, even flimsy ones designed 'just' to get someone on public assistance, can automatically result in an “Approved” stamp on a Disability application, while people suffering from disabling physical ailments are turned down? And some are forced to spend years fighting for eligibility, and may never be approved anyway? 

We have a system in some states that actively encourages game playing, illness diagnosis faking/swapping for eligibility, and adds a definite sleaze factor when it comes to getting the chronically ill/disabled with physical ailments on Disability. This is something that needs to change.  

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.