3 posts tagged “empowered patient”

It’s Self-Care Day! 7 “pillars” for taking care of you

Posted 4 weeks ago by

Today is International Self-Care Day. There’s even a Senate resolution designating July 24 as a day to recognize the importance of self-care in the U.S. (it’s on 7/24 because, ideally, it should be a focus 24/7 for everyone). Has your self-care — from diet and hydration to hygiene and hobbies — been slipping because of competing priorities? Bring it back into focus with these “seven pillars” recommended by health care experts – plus some easy TLC ideas from your fellow member, Laura.

What are the “7 pillars”?

The International Self-Care Foundation has developed what it considers The Seven Pillars of Self-Care:

Pillar 1 – Knowledge and health literacy: Finding health information and ways to understand it so you can make appropriate health decisions

Pillar 2 – Mental well-being, self-awareness and agency: Getting health care screenings; “knowing your numbers” for important stats like body mass index (BMI), cholesterol and blood pressure; and keeping tabs on your mental health

Pillar 3 – Physical activity: Staying as fit as possible (talk with your doctor about a healthy exercise plan that works with your condition)

Pillar 4 – Health eating: Keeping a nutritious, balanced diet

Pillar 5 – Risk avoidance or mitigation: Quitting tobacco, limiting alcohol use, getting vaccinated, practicing safe sex and using sunscreen

Pillar 6 – Good hygiene: Bathing, washing your hands, brushing your teeth, cleaning your produce and taking other food-safety steps

Pillar 7 – Rational and responsible use of care products and services: Knowing the guidelines and possible side effects or dangers of medications and services (prescriptions, over-the-counter meds, alternative or natural health products), and working with a health care professional to plan how to use these things safely

Many of these fit well with the mission and resources of PatientsLikeMe, so remember to keep tracking your conditions, symptoms, treatments and more in your profile.

Laura’s tips for TLC

PatientsLikeMe Team of Advisors member Laura — who’s living with bipolar disorder and PTSD — wrote a piece to share her 5 tips for self-care with the mental health community. She says self-care is “paramount” in living with multiple chronic conditions.

For Laura, “self-care is really about utilizing the five senses in an attempt to make you feel better, or at least to bring you to a more manageable spot until you can talk with a doctor or therapist.” So her self-care practice includes cool things like adult coloring pages, massage, singing/listening to music and more activities that deliver some “zen.”

What questions or advice do you have about self-care? Add a comment below or, better yet, join PatientsLikeMe to swap ideas with the community here in the forum!

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Life-changing second opinion stories: “I decided to get a second and third opinion…”

Posted 8 months ago by

Stories showing the importance of second opinions have been popping up in the media and on PatientsLikeMe. Check out the recent news headlines, hear a remarkable story of a PatientsLikeMe member who received a life-saving lung transplant after getting a second (and third) opinion, and share your own experience of piecing together your health puzzle.

Extraordinary second opinion stories

The Washington Post recently featured two powerful pieces related to second opinions — one about a man who got a second opinion at his mother’s urging (and received life-saving treatment for metastatic testicular cancer), and another about a woman who did not seek one and underwent unnecessary major surgery (removing her breasts and uterus). “I am damaged for the rest of my life,” the woman said.

PatientsLikeMe member Theresa (Pipersun) recently shared her “whirlwind experience” and remarkable second opinion story in the forum.

After two bouts of severe pneumonia earlier in 2017, a CT scan in June confirmed Theresa had a serious lung condition, idiopathic pulmonary fibrosis (IPF). While the diagnosis was correct, her doctors did not believe her condition was as advanced as she suspected.

“My pulmonologist was terrible,” she says. “He would not prescribe me oxygen, and would not sign a referral for pulmonary rehabilitation, stating it would do me no good, that if I had COPD he would. We talked about my life expectancy and lung transplant. He thought I had about 5 years, and I stated then how come I feel I am going to die in 3-5 months. He also made a derogatory statement, [he sat on the lung transplant review committee for the Northeast region] he stated ‘why would I put you on the list when there are so many children that need a lung.’ I responded that I didn’t think I was in the same [transplant candidate] group. But his attitude kick started my drive to find out as much as I could about organ donation regions, stats, etc.”

When her doctor denied an oxygen prescription, fellow members with IPF urged her to seek another opinion.

“I decided to get a second and third opinion,” she says. Consultations with two specialist groups in August – and her rapidly declining condition (which landed her on life support in September) – resulted in her receiving a lung transplant. “They admitted me to ICU and that’s the last I remember for 9 days,” she says. “I became conscious with a new set of lungs on Sept. 28.”

“I had to advocate for myself all the way and believe in what my body was telling me versus specialists in Oregon,” she says. “Even my GP thought I was in the early stages. If I would have listened to them, I would not be here/alive today. I am 57 years old, they said I have a new birthday, September 28.”

Pointers on second opinions

Steven Petrow, the writer who shared his second opinion success story in The Washington Post, offered some tidbits and tips for other patients in his Op/Ed piece:

  • 10 to 20 percent of all medical cases nationwide are misdiagnosed, affecting at least 12 million people, according to a Mayo Clinic researcher who has studied misdiagnoses
  • Don’t be talked out of a second opinion — doctors should support and encourage them (as PatientsLikeMe members have noted, “A good doctor will not be offended”)
  • “Be upfront and respectful with your doctor” — this can help ease the process of sharing records, and help you maintain a relationship if you stick with your original physician
  • Everyone has a right to a second opinion, and they’re usually covered by private insurance, Medicare or Medicaid (but check with your own insurance)
  • “Not all second opinions are created equal” — find a doctor who’s board-certified in their specialty and (ideally) affiliated with an academic medical center with a strong reputation (avoid only relying on recommendations from friends or a referral from your doctor, because there could be some bias)
  • Consider all your options, including online second opinion resources(Petrow mentions examples like Dana-Farber’s online oncology programCleveland Clinic’s MyConsult and SecondOpinionExpert)

More members chat about second opinions

On PatientsLikeMe, there are more than 4,000 mentions of second opinions in the forums (trend-spotting: you often encourage each other to seek them, as member Peggy recommended in her blog post about self-advocacy). Here are some of the communities that have talked the most about second opinions in the forums — join PatientsLikeMe to see what folks say:

  • Multiple sclerosis
  • Fibromyalgia
  • Mental health
  • Parkinson’s disease
  • ALS
  • Epilepsy
  • Cancer and lung cancer

What’s your second opinion story? Share it in the comments.

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