Speaking of Pain

Fibromyalgia is, by all accounts, a punishing disorder. Here, though, is a dilemma. To doubt a another woman who suffers from fibromyalgia, is not merely unkind; it has become politically incorrect. You may well wonder why anyone would doubt or minimize another woman's painful disorder. I admit it is an attitude toward fibromyalgia that stems from recent experience. I have become acquainted with two women, who say they suffer from the ailment. It has not been a pleasant acquaintance. One woman, 50, has been ill with fibromyalgia for a decade. I'll call her Becky. An individual whose illness is her life, Becky is self-involved, entitled and demanding. She's a devout church goer, however, having turned to religion to ease her psychological pain. It is extremely difficult to have a conversation with Becky; although she appears to be a bright woman, her 'fibro' and her church are her sole interests.

The second woman is Becky's friend and my neighbor, Mona. The two have become fast friends. Mona loves to discuss ill health, hers and others'. If you are in pain, however, do not enter the fray. Your drama will never earn the spotlight. If another person has an ingrown toenail, Mona has gas gangrene, and will have to have her foot amputated. Unlike Becky, Mona has interests other than  fibromyalgia. A food fanatic, Mona always has nutritional advice to offer. She is an organic, gluten-free, non-GMO, high fiber, low salt, no sugar, low fat kinda gal. Once Mona befriended Becky, fibromyalgia seemed inevitable.

So, what is the truth, is this shared ailing psychosomatic or sympathetic, or both? I neither choose to speculate, nor to share their pain dialog. I'm not the best at empathizing with these women, but will try to offer kindness, rather than judgement. Others in these women's lives have to stay the course and try to keep sane themselves, but, not me (at least, not me all the time.) In the interests of better understanding of fibromyalgia, however, here is a link to the May Clinic I found helpful:  http://www.mayoclinic.org/diseases-conditions/fibromyalgia/basics/definition/con-20019243

Bad things do happen; how I respond to them defines my character and the quality of my life. I can choose to sit in perpetual sadness, immobilized by the gravity of my loss, or I can choose to rise from the pain and treasure the most precious gift I have - life itself. -Walter AndersonWe have talked about chronic pain and stress management in prior posts, and, in the case of fibromyalgia, it seems particularly important to find and maintain both emotional and physical support. If you suffer the widespread pain and fatigue of fibromyalgia, make a conscious effort not to speak your pain, not in body language, facial expression and not in your conversation. At least try not to speak your pain constantly. The first benefit will be perspective; pain tends to recede with the importance we give it. The second will be a change in our ownership of pain; we can decline to own our pain, in favor of creativity, for example. Relationships will bloom with others who seek, speak and manifest wellness. A pain journal may help; it will not only help you to manage your chronic pain, but, also for care providers, family and friends who need greater understanding: http://pain.about.com/od/livingwithchronicpain/f/pain_journal.htm

Finally I offer a link to a site with practical advice and support for sufferers of fibromyalgia: http://www.cfidsselfhelp.org

Evil Computer

System Evil

Americans are constantly bombarded by blather regarding public assistance funding. The noise takes precedence over the dismal performance of the states in administering programs such as SNAP and Medicaid. I'll avoid the term, "broken system." It would just fall on deaf ears. In any event, broken implies reparable (not to mention, the will to repair.)
     Let's begin with Colorado, my state of residence.  A March 3, 2014 headline in "The Denver Post" read: OFFICIALS WANT MILLIONS TO KEEP UPGRADING TROUBLED COMPUTER SYSTEM. The Colorado Benefits Management System has been and remains, faulty, per Colorado Human Services Executive Director, Reggie Bicha. I'll give him that and, oh, so much more. 
     Here are the findings of the most recent state audit, which found Department of Human Services errors on the rise. The errors include: 1) inappropriate approval of approximately $26 million in food assistance benefits (2012 fiscal year;) 2) Erroneous denial of $11 million in food assistance to deserving applicants/clients, during the same period. This translates to erroneous denial, termination or suspension of benefits to 68.7% of Colorado households found ineligible for food assistance, beginning in fiscal year 2012.
     Here's the bottom line with regard to CMBS and the training to use it. It has cost the State of Colorado $300 million to operate, repair and update CMBS. The most recent state investment of $11 million (coupled with federal funds) resulted in increased system efficiency. This is according to the Governor's Information Technology expert, Kristin Russell. (In the interests of fairness, part of the states investment was used to prepare the State for Affordable Health Care and the associated Connect for Health Colorado.) Meanwhile errors continue to plague the system. More important these errors result in suffering, even, death.
     There is a concept in computer technology about faulty systems. Backdoor repairs do not work. In other words, to repair and update a fundamentally bad system is considered by most computer scientists to be futile. This is particularly true in government. California, for example, has been forced to examine the issue of chronic failures of government information technology projects. http://www.pe.com/opinion/editorials-headlines/20130212-editorial-determine-why-state-computer-projects-fail-routinely.ece   

Failure is not an option. -Confucius 

     Considering the audit error outcomes for the State of Colorado Department of Human services, the problem must go deeper than CMBS. I'll back this statement with personal experience as a client of the Denver Department of Human Services over a decade of misery. I do not use the term consumer, because beneficiaries are not treated as either "underserved" or "consumers." 
     From experience, it is impossible to reach a caseworker at DDHS. Supervisory personnel do not respond to calls from clients. It is nearly impossible, with wait times of an hour, to reach the Customer Service Call Center. There is no telephone number or e-mail listing, by means of which the client may communicate directly with a caseworker. Everything and everyone goes through the overburdened central system. 
The Department requires routine paperwork from clients. I have sent certified mail via USPS that failed to be acknowledged, resulting in the denial of benefits. Faxes have failed. Hand delivered documents with the DDHS date stamp prominently displayed, have gone astray. The most recent hand delivery resulted in February 2014 denials and the disappearance of a SNAP (EBT) distribution February 7. 
     By now, you're wondering whether I saved the documentation with receipts. Yes, without fail. DDHS has reluctantly rectified its errors, in my case, for a decade. Herein lies the second part of the problem. Outgoing mail from the Department is not merely slow; it often reaches recipients after the appeal window has closed, denying the household's right to appeal. Next benefits are seemingly cut forthwith.
     If I sound like a whiner, here's what happened following last year's fiasco. I was denied SNAP benefits, admittedly, due to my own error. I received the letter after my benefits were cut. The appeal window had closed by the time I received the notice. Unaware of the cancelation, got to the cashier at a local Safeway store, could not pay for my groceries with food stamps, nor by another means. A friend bailed me out, and, subsequently waived the debt. Anyone for a dose of extreme humiliation and angst? The popular term is "food insecure."  
This year it has happened again. I walked, waited and took a bus and train to DDHS, to hand-deliver my recertification documents in a blizzard. After I obtained a date stamp, I submitted the documents.
     A week later I receive the accusation and denial. In checking my SNAP benefits, I'd been cut off, before the letter arrived. The issue was subsequently resolved online. When I received a demand for yet another change report in March, I made corrections to some ancient expense information, and noted a $4.00 reduction in my rent, due to a reduction in the energy costs for the tax credit building, where I live. Within another week or so, I received a drastic reduction in food stamps and denial of my Medicaid program. Now I am scheduled to make the commute to DDHS and wait three or four hours to, hopefully meet with a case worker. 
     I lost my medical coverage on a similar occasion. The ground is constantly shifting under my feet, and, I must turn either to family or friends occasionally to cover bare essentials. American citizens and politicians actually believe food banks are the place to turn. That's another myth altogether, one I will not try to rectify today. Add this to a persistent attitude on the part of DDHS management and staff that beneficiaries are cheating, unworthy, ungrateful ... undeserving.
     Fix the attitudes and train people to do more than operate their computers. From the tonnage of paper I receive, generated by DDHS computers, the button pushers are certainly winning the paper war. Make the entire system accessible to clients, not just online, Mr. Bicha! Otherwise, even slaying your computer monster will not help. 
      If the latest round of funding is not approved, will Coloradans be worse off? It is hard to conceive, but we know what runs downhill. As for me, I intend to file a federal complaint for five years of denials relating to Medicaid SHIP.  For me, Colorado SHIP repairs have sailed.

Sex Talk

With so many Baby Boomers single again, do you wonder how (or whether) we should approach dating and marriage? I am, personally, neither elderly nor a female boomer. My elder daughter is too young to be a Boomer, but, in her fifties, she is an extraordinary woman, a ferocious, hard-working single mother. My daughter has raised a handsome, gifted, loyal man without support. So, when she met a nice man recently, I thought, "What a joy. She will have a little light-hearted company." Her newfound friend, however, made classic errors. He rushed her into romance. He began to demand her full attention. He insisted she would learn to change, and accommodate his lifestyle. Three proved to be the charm. She wished him the best, while wishing him gone.

I am profoundly relieved by my daughter's astute reaction. Dating and marriage are distinctly tempting at any age. However, divorce and domestic violence are on the rise among Baby Boomers. Later in life domestic violence is closely related to other potential elder abuse, and the question is one of cooperation among entities that address domestic and elder abuse. In any event, thinking about the potential for things to go right in a relationship goes hand-in-glove with considering the chances things will go amiss.
http://www.ncea.aoa.gov/Resources/Publication/docs/nceaissuebrief.agingnetworkguideDV.pdf

“Impertinent submissive,” Raoul snapped, and his dark brown eyes turned mean. “Nothing new for this one. You're doing a lousy job of bringing her to heel, Marcus.”
“Bring me to heel? Like I'm a dog?” Without thinking, Gabi instinctively yanked away and snapped out, “Bite me.” --Cherise Sinclair, Make Me, Sir

Let me be clear. Sexually transmitted disease is also a significant, growing, issue among people who should know better than to have multiple partners or unprotected sex. Absent the fear of pregnancy, however, many older Americans have multiple partners, and are ignoring the dangers. Have we forgotten about HIV/AIDS and treatment-resistant strains of Syphilis and Gonorrhea? Or, do we choose to believe these are unlikely outcomes among people ostensibly sadder and wiser? Boy, do I have news: http://www.nytimes.com/2014/01/19/opinion/sunday/emanuel-sex-and-the-single-senior.html?_r=0

Spring is here, my dear, so be smart. Most boomers are too smart to participate in the club scene, unless I'm mistaken. If not, it goes without saying; remember the harsh lessons of youth. Do not think about online dating or personal ads. Take your time; meet people in correct contexts, and know who people are. Be extremely cautious about social media. Never trade personal information from the get go ... no exchanging personal addresses. Agree to a luncheon, a cup of coffee. Meet at a public event, by all means, but meet there. See a person long enough to become actual, not virtual, friends, before dating. Once you are dating, take a long think, before taking steps toward combining your life with a partner's life, whether or not this means rushing toward the altar. There is absolutely no such thing as Internet privacy. Everything you post or write online (including your personal e-mails) is public information. We don't have to talk about sexting, I'm reasonably confident, but anything at all you don't want public, do not share in the name of love and romance.

Date for months, not days, before being intimate. Have "the talk" about sexual histories and protection, beforehand. You knew all this as a dating greenhorn, so how come you don't know it now? If you are a woman who finds it awkward to carry, offer and apply condoms get over it! Broach the subjects of sexual history and protection without hemming and hawing. It is a brave new world, ladies and gentlemen. Nobody will care for us, if we do not care for ourselves.

Shared responsibility is a good thing. Individual Responsibility is everything.

Dangerous, Dangerous Places

Empty Too Soon?

     Patient safety, as much as it is discussed in this country, appears to be foundering. What is your take on the progress and enforcement of patient rights? What is working and what is not working? Personally the possibility of surgery does not frighten me nearly much as the possibility of a hospital stay. It is a grim prospect to have even more federal support for hospital services disappear: http://www.mcclatchydc.com/2013/02/28/184476/looming-federal-spending-cuts.html 
The price tag will be preventable deaths, a disproportionate number of which will be deaths of elder patients. Three years ago the HHS Inspector General estimated 180,000 patients per year die as a result of poor hospital care; this estimate is three years old and was conservative in 2010. 
      However, if a close friend or family member requires skilled care outside of home, the risk is magnified by receiving care in a skilled nursing facility. One out of every three of patients will be injured or will die in such a facility. The number is staggering, considering there are 15,000 skilled nursing facilities in this country. Here is a link to the Pro Publica website. The following article concerns skilled nursing facilities. By all accounts, including the estimate of Medicare's Inspector General, 22, 000 injuries per month will occur (more than 1,500 fatal.) According to Medicare nearly sixty per cent of these cases could be prevented:
http://www.propublica.org/article/one-third-of-skilled-nursing-patients-harmed-in-treatment
     Predictably representatives of America's huge, growing, nursing home industry answer by protesting any suggestion that insufficient light shines on the quality of care patients receive in their facilities. They claim government inspection is vigorous. Clearly annual inspections, however vigorous, are ineffectual. One suggestion by Johns Hopkins makes sense. It is to develop metrics to track improvement, as an adjunct or alternative to annual inspection.

 "...a system of long-term care that’s trying to retrofit to be a system for post-acute care. The resources to care for (these patients) and commitment from those sending them from one facility to another haven’t kept pace." -Dr. Jonathan Evans, president of the American Medical Directors Association

     Consumers know nursing facilities have to deal with Medicare itself; it is a given. Medicare payment is a significant part of the problem; it is both insufficient and slow. However, this has not slowed industry growth, so skilled nursing facilities must be profitable. Are nursing homes beleaguered by underpay and overwork? I believe it is likely. Are they places where people work purely for love and concern for their patients? I think this is a gross exaggeration. In any event, it is no consolation to injured or dead patients or their loved ones.
     In addition industry representatives decry abbreviated hospital stays, alluding to the original intent of nursing homes. Their facilities were intended to provide care for medically stable patients, but they currently admit many patients whose hospital stays have been cut short, too short. Assuming this is not buck-passing, the healthcare system is failing miserably to assign joint accountability in what it calls the continuum of care.
      Richard Mallot, Executive Director of New York’s Long Term Care Community Coalition characterizes skilled nursing facilities as "dangerous, dangerous places. " He believes the industry entirely capable of addressing the staggering numbers of medication errors, bedsores (infections) and falls experienced by patients. He does not fault Medicare's standards of care, stating standards of care are poorly enforced.
     As families and friends of patients, we are on our own, left to advocate for people we love. To begin be certain the condition of the patient warrants dismissal from the hospital. Before choosing a care facility, check Pro Publica's Nursing Home Inspect, for information about available skilled nursing facilities: http://projects.propublica.org/nursing-homes/
Once a patient has been admitted to a skilled nursing facility, keep a close watch on the patient, If necessary, enlist a team to be present randomly and regularly for the patient. Never dismiss anything a patient says. Advocate with medical staff, the patient's primary care physician, and nursing home management. Promptly contact an ombudsman, as well as your state's oversight agency, if you deem a problem to be ongoing. 

Risky Business

    An estimated 25 million Americans suffer from acid reflux. We're a high-stress society and these are stressful times. Equally important, too many of us are not managing our stress or our weight effectively. (And, no, all exercise is not equal in terms of stress management.)

     I feel compelled to write about "hyperacidity"from the standpoint of a patient, not as a medical professional. I began my journey as a formerly anorexic, teenager, by suddenly developing a gastric ulcer. Back in the day, before ulcers became linked to a bacterium, h. pylori, ulcers meant extreme lifestyle changes, trips to a psychiatrist, surgery, or all of the above. My stomach condition changed my life immediately and irrevocably. A university student, I was assigned stress management classes by the campus health clinic, instructed to see a psychiatrist once a week. Liquor, caffeinated beverages and smokes became out of the question. The bland diet I'd been given was ghastly. Nonetheless fear drove me to do what I was told, and the combination worked.

     Fade to adulthood and 30 or 40 years of a very stressful career. My life and career resulted in GERD.  What is worse than GERD, other than complications, such as Barrett's Esophagus or esophageal cancer? In my estimation, it is treatment. I'd urge anyone considering a proton pump inhibitor (PPI,) to have a very long think. Lifestyle changes take longer than semi loads of antacids or months of purple pills. Eventually facing symptoms is not facing the disorder. (Treatment for h. pylori infection is another matter, one I won't attempt to address here, except to say, it does require treatment.) 

     Whether or not you are obese and suffer an inflammatory condition, just know this. Everyone will have nutritional advice, from the sane to, literally, eating as the Neanderthals ate. A very low carbohydrate diet can help to keep down the overgrowth of bacteria and viruses in the digestive tract, but there are risks. By all means people should consult their physicians, before embarking on dietary or exercise regimens. Even Yoga, which I consider a boon for stress addicts (you know who you are) become competitive and stressful with the wrong approach.

Following the Romanian tradition, garlic is used in excess to keep the vampires away. Following the Jewish tradition, a dispenser of schmaltz (liquid chicken fat) is kept on the table to give the vampires heartburn if they get through the garlic defense. -Calvin Trillin
    
  Truckloads of antacid cannot be a good thing, but I promise a PPI can have profound effects on the body. My first reaction to Prilosec was something to the effect of, "I'm bullet proof. I can have a glass of wine with dinner or some morning coffee! Whopeee!" Over time the GERD had ceased to be life-altering, but joint pain and stiffness were no longer restricted to my arthritic knees. I was unable to take in sufficient Magnesium for calcium absorption. Tests at an arthritis clinic revealed osteopenia and a Vitamin D deficiency. The doctor prescribed pain killers. Nobody, at any juncture, said a word about the proton pump inhibitor. Here is a link to a Harvard Medical School (Harvard Health) publication concerning the treatment of GERD with proton pump inhibitors: http://www.health.harvard.edu/newsletters/Harvard_Health_Letter/2011/April/proton-pump-inhibitors. I found the following New York Times article equally interesting, and a bit less conservative in its assessment of the dangers in using these drugs: http://well.blogs.nytimes.com/2012/06/25/combating-acid-reflux-may-bring-host-of-ills/?_php=true&_type=blogs&_r=0
     Driven to understand the causes of my compound misery, here is what I have found regarding the causes of GERD: http://chriskresser.com/the-hidden-causes-of-heartburn-and-gerd. Here's the thing. Any way I look at them PPIs, like pain killers, are short term "fixes" for chronic conditions. There is more at stake, however, than side effects. It is risky business failing to address the causes of heartburn; by doing so, we also fail to address the causes of inflammatory conditions. It is a double whammy. I've tried many so-called symptomatic approaches, from apple cider vinegar to meditation. They have all worked to one extent or another, but, none was a cure.
     Having abandoned PPIs, I am embracing lifestyle changes. One other thing I can say without equivocation: We live in a climate of stress, and the price we pay for our national addiction to telecommunications is enormous. Humans need to take frequent rests from all the noise. I take regular news breaks, some for weeks or months at a time. Try leaving it all (including the SmartPhone) behind. The freedom may prove addictive!

  

The Quality of Life

Pete Seeger

     We speak about the quality of life, but how do we define it, and how can we measure it objectively? We know, for example, money is not the defining factor in the quality of our lives. Physical, intellectual, social and emotional engagement are key in supporting independence among aging adults. We acknowledge, however, people must meet basic needs, shelter, nutrition, clothing, hygiene and health care, ideally, with their own financial resources. It is a diminishing ideal, as the physical, emotional and financial challenges of aging, literally, hit us where we live. Families cannot always take up the slack, so many elders look to government. Population aging influences so many aspects of society, and is an incontrovertible fact of life everywhere. We know the number of people 50 and over has increased tenfold, since the middle of the last Century. This rate of aging is unprecedented in human history, and the rate at which we are aging continues its rapid advance.

• Although countries experience differences in the rate of aging and are at various stages in the process, population aging is a global phenomenon and will continue. The balance between younger and older people will not reverse at some future time.
• This means many countries will come to the table poorly prepared, particularly, those whose populations age less rapidly.

     So, who's keeping track of how nations are doing in meeting the needs of older citizens? In October 2013 the United Nations (U.N. Population Fund) and HelpAge International advocates published their findings in the Global AgeWatch Index. The study sought to look at conditions facing elderly the around the globe in the face of demographic change.  Here is a link to the rankings:

 http://www.helpage.org/global-agewatch/data/global-rankings-table/

Some countries are not included in the rankings, as well as the criteria used to produce them. It is worthwhile having a look, however, because there were some surprises.

We want a world where life is preserved, and the quality of life is enriched for everybody, not only for the privileged. ~Isabel Allende

     How did the United States come out in the rankings? It ranked eighth. One response to the ratings, however, stood out. It had to do with the estimated 23% of older people living in poverty in the United States. I agree with the responder; this should disqualify the U. S. from inclusion in the top ten. It turns out the study merely considered access to education and employment in developing its rankings.

Added to the dirty secret of poverty among ethnic minorities and women in the United States is another. Americans over 50 face age discrimination in the workplace and in seeking employment. Age adds to other discriminatory criteria, but it is more pervasive and less discussed.  The newer dirty secret is the incremental increase in older Americans who are remaining at work, or returning to work. These are people who cannot retire fully or partially, and meet basic needs.

     This country is a powerhouse, and lead the world in human rights. We can do better by our vulnerable citizens. The hopeful thing, it seems to me, is, as America ages, older people represent a greater proportion of votes. As an American I hold myself accountable to be informed and engaged in the process of furthering a just democracy.

An Unflattering Light

     The world lost a great talent, with the passing of Philip Seymour Hoffman, who was a superb director and actor. He raised the level of his craft to art, never backing away from transcendent truths, beautiful or ugly, in the characters he acted. Precise imitation, mimicry, was not Hoffman's only genius. His genius was his refusal to prejudge a character or an audience. In performance, Hoffman simply did not possess a truth filter, so his performances resonated with stage and film audiences alike.
     Hoffman's 2005 portrayal of Truman Capote, the author of "In Cold Blood", revealed more than the brilliance of the writer, or his descent into the desolation of murder and retribution. Hoffman laid bare Capote's vanity and superficiality in a cocktail party landscape. Add more than a touch of the effeminate, and Capote surfaced as an intellectual elitist, as well as an old-fashioned flamer. Layer by layer Hoffman revealed the the intelligent, sensitive, writer we recognized. Truman Capote shared Philip Seymour Hoffman's capacity to grasp the humanity in broken characters; taking us from annoyance, to squeamish discomfort, to hot tears. It may not have been a defining role for Hoffman (no such role existed,) but he was awarded multiple acting awards for "Capote", one, the 2005 Oscar for Best Actor.  
     He was nominated for three other, supporting, roles in film. However his film acting, as magical as it was, never equaled his greatness onstage. He was theater in New York, during his stage career. Three Tony nominations, one for the role of Willy Loman in Miller's Death of a Salesman, barely cover the awards Hoffman won. Wikipedia provides a more complete list: http://en.wikipedia.org/wiki/List_of_awards_and_nominations_received_by_Philip_Seymour_Hoffman

The only true currency in this bankrupt world is what you share with someone else when you’re uncool. -Philip Seymour Hoffman

     In person, Hoffman was the coolest and most uncool individual anyone could conjure. Unlike many ambitious celebrities, he maintained a private persona. By all accounts he was a great heart. The man, himself, was as candid about his flaws in interviews as he was about the demands of his art. The tragedy was not his second descent into addiction, although it is terrible to contemplate his struggle to stay free of alcohol and drugs. The tragedy is to characterize him as a victim of disease; it would be unjust to portray the man as other than a creative genius with a prolific career. Here is a link to a list of ten films, featuring performances by Philip Seymour Hoffman. You know what to do:
http://www.smh.com.au/entertainment/movies/philip-seymour-hoffmans-top-10-film-roles-20140203-31wlu.html
     Someday we will all die. With any luck nobody will point to our most glaring flaws, let alone, to whatever proved fatal. Personally I'd prefer to skip the obit, funeral, or memorial service. Neither religious, nor particularly sentimental, I know my friends and family will avoid the so-called celebration of life. Somebody will just, raise a glass, L'chai-im!