Stop wishing, start doing...or stop wishing!

Yep a rant. This is a rant directed at people who are perfectly healthy, capable and intelligent wishing for things that they can easily have and don't have the desire to work for.

Perfectly Healthy Person (PHP): "I wish I could X" X being a certain physical accomplishment/

Me, Woman with Chronic Diseases (WCD): "Why can't you? All you'd have to do is try."

PHP: "Well, I don't want to try."

WCD to herself: "Sheesh, stop wishing for things you're perfectly capable of doing if you'd just try!"

Here's my beef. In order for me to do the things I do, I have to try really hard, I have to plan very far ahead, I have to work out EARLY in the morning (cause that's when I have energy), I have to research, study and confer with my other WCD's, I have to carry pills, an injection kit and wear a Medic Alert bracelet. I have to tell friends, acquaintances and race directors my freaking health history and show them where my meds and Emergency Injection kit are. I have to risk dehydration if I don't take my pills right. I have to risk going to the hospital if I start throwing up. Through trial and lots of error, I have to take pills the whole time I'm working out. I go to bed early and don't socialize in the evening because I want to accomplish the things I wish for.

Please, if you wish for something and you CAN do it. Just DO IT or don't mention it!

If you wish for something and you don't want to try to do it even if you can, keep your wishes to yourself. It's a insult and taunt to me for a person to be fully capable of easily doing something and saying they wish they could do it but paying no attention to what it took me to accomplish the same thing.

A "simple" goal for me and many of us with Addison's is not so simple. Running (or any physical activity) is not just putting on shoes and going out the door, there's so much more to it than that. Just the logistics can be intimidating and exhausting let alone accomplishing the actual physical goal.

End rant.

Women With Premature Menopause At Increased Risk For Potentially Fatal Adrenal Condition

ScienceDaily (Sep. 2, 2002) — Women with spontaneous premature ovarian failure (POF) are three hundred times more likely than members of the general population to develop a serious condition in which the body attacks the adrenal glands, according to a study by researchers at the National Institute of Child Health and Human Development (NICHD). The study also reports that a test measuring immune system proteins known as antibodies is an effective way to diagnose the adrenal condition in women with spontaneous POF. The researchers published their findings in the August issue of Human Reproduction. Premature ovarian failure occurs when the ovaries stop producing eggs and reproductive hormones well in advance of natural menopause. An estimated one percent of American women develop the condition by age 40.

"This study shows that an adrenal antibody test is an effective way to determine if women with POF are at risk for primary auto-immune adrenal insufficiency," said Duane Alexander, M.D., Director of the NICHD.Primary auto-immune adrenal insufficiency, also known as Addison's disease, occurs when the body's own immune system makes antibodies that attack and destroy the adrenal glands. Antibodies ordinarily bind to disease-causing organisms, tagging them for later destruction by the immune system. The adrenal glands produce hormones (cortisol and aldosterone) that regulate salt metabolism and the body's response to stress. Addison's disease is easily treated with medication that replaces the hormones that the adrenal glands are not making. However, if a person with untreated adrenal insufficiency experiences a stressful event, like a severe illness, injury, or surgery, he or she can die from the condition. Despite the fact that adrenal insufficiency can be life threatening, there has been ongoing debate in the medical community as how to best detect this condition in the early stages.

The researchers, led by V.K. Bakalov, M.D., a member of the Developmental Endocrinology Branch at the NICHD, screened 123 women with POF for primary adrenal insufficiency. They used three different testing mechanisms to screen for the disease: 1) the adrenocorticotrophic hormone (ACTH) stimulation test (the standard test for diagnosing adrenal insufficiency); 2) the adrenal antibody test; and 3) the morning cortisol test. In all, the researchers found that four (3.2 percent) of the 123 women with POF had previously undetected adrenal insufficiency. These women had abnormal adrenal function despite having none of the common symptoms of adrenal insufficiency, such as unusual tiredness and weakness, dizziness when standing, loss of appetite, darkened skin, and craving for salt. The rate of adrenal insufficiency among women with POF in this study is 300 times higher than the 1 in 10,000 rate seen in the general population.

The researchers found that one of the three tests — the adrenal antibody test — was most effective in detecting adrenal insufficiency in women with POF. In fact, all four of the women with demonstrated adrenal insufficiency had a positive adrenal antibody test. In contrast, the morning cortisol test was positive in only one of the four women who was subsequently found to have adrenal insufficiency. In addition, the morning cortisol test had a high rate of false positives, finding ten women positive who were later found to have normal adrenal function. Finally, the standard ACTH test was positive in two women found to have normal adrenal function. The authors do not advise using the ACTH test, which is a diagnostic test, as a screening tool because it may result in the unnecessary treatment of individuals with normal adrenal function. Instead, they recommend reserving it for use as a diagnostic test.

"It is probably a good idea to screen all women with POF for the presence of asymptomatic adrenal insufficiency by measuring adrenal antibodies," said Lawrence Nelson, M.D., one of the study's authors and a member of NICHD's Unit on Gynecologic Endocrinology. "This screening is especially important before any surgery or other physical stress."

The NICHD is part of the National Institutes of Health, the biomedical research arm of the federal government. The Institute sponsors research on development, before and after birth; maternal, child, and family health; reproductive biology and population issues; and medical rehabilitation. NICHD publications, as well as information about the Institute, are available from the NICHD Web site, http://www.nichd.nih.gov, or from the NICHD Clearinghouse, 1-800-370-2943; e-mail NICHDClearinghouse@mail.nih.gov.

From Medscape Medical News http://www.medscape.com/viewarticle/718095?src=smo_tw_BUSI

New Model Addresses Caring for Patients With Multiple Chronic Conditions

Laurie Barclay, MD

March 8, 2010 — A new primary care practice model addresses the challenges of caring for patients with multiple chronic illnesses, according to a report in the March/April issue of the Annals of Family Medicine.
"These patients typically consult multiple clinicians, use multiple medications, and compared with patients with a single chronic illness, have higher psychological distress, longer hospital stays, increased use of emergency facilities, and higher rates of mortality," write Hassan Soubhi, MD, PhD, from the University of Sherbrooke in Chicoutimi, Quebec, Canada, and colleagues.
"Clinicians who care for them face competing demands, complexities of polypharmacy, difficulties in applying practice guidelines, and increased potential for errors. Clinicians also face increased diagnostic and treatment challenges as different combinations of conditions can interact in unpredictable ways."
Because of these challenges, primary care for patients with multiple comorbid conditions requires flexibility and ongoing coordination to ensure patient-specific care tailored to individual circumstances. The authors propose that communities of practice could facilitate delivery of complex yet flexible care, provided that the clinicians within these communities are willing to take the following steps:

• Learn from their shared experience of success and failure.
• Help one another accomplish their goals.
• Promote ongoing learning within the community.

The study authors describe primary care in these communities as a complex adaptive process in which member clinicians learn to improve care through repetition. Specific strategies would include the following:

• Defining common goals.
• Creating care plans jointly.
• Participating in reflective, case-based learning.

"As community members manage their knowledge, gain insights, and develop new care strategies, they can improve care for patients with multiple conditions," the study authors write. "Using a mix of methods, future research should explore the conditions that are necessary for collective learning within communities of clinicians who care for patients with multimorbidity and who develop new knowledge in practice. By understanding these conditions, we can foster the development of collective learning and improve primary care for these patients."
Redesigning primary care practices based on a community of practice model would require optimizing the allocation of clinical responsibility in accordance with clinicians' knowledge base and training, support by senior leaders of community development and iterative change, and willingness to experiment with different payment models.
"Some of these changes are already underway in many practices, with the increasing incorporation of midlevel clinicians and use of small cycles of practice change," the study authors conclude. "To accelerate collective learning and the evolution of practices, there is a need for appropriate feedback mechanisms related to different payment modalities, eg, pay for performance, payment for complex patients' visits, care-coordination fees, and various incentives for knowledge production and sharing within and between primary care practices....Testing the added value of communities of practice in primary care remains an empirical issue worth exploring in future research."
Ann Fam Med. 2010;8:170-177.

Authors and Disclosures

Journalist

Laurie Barclay, MD

Freelance writer and reviewer, Medscape, LLC

Disclosure: Laurie Barclay, MD, has disclosed no relevant financial relationships.

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