Lisa Kaneff may not look sick, but her chronic pain affects nearly every aspect of her life.
Seven years ago, freelance writer Lisa Kaneff, 33, was diagnosed with Morton's neuroma in her right foot. The nerve condition makes her feel as if she's constantly stepping on broken glass. Two surgeries have yielded little relief, forcing Lisa to micromanage nearly every hour of her day.
Lisa is one of 100 million Americans—up to 70 percent of them women—living with chronic pain. Her condition belongs to a group of on-the-rise "hidden diseases," ailments without obvious visible symptoms or easily diagnosable medical markers. The numbers are staggering, especially among the most common afflictions: Eight out of 10 people (again, mostly women) will suffer chronic back pain in their lives, nearly 20 percent of young women now have chronic migraines, and, this year alone, about 5 million adults will be diagnosed with fibromyalgia, a painful musculoskeletal illness that's seven times more prevalent in women than men. Also affecting hundreds of thousands are chronic fatigue syndrome, neuropathy (a.k.a. nerve damage), and autoimmune disorders like rheumatoid arthritis and lupus.
Here's what a day in the life of someone with chronic pain looks like:
I can't just get up, get dressed, and run out the door. If I'm in agony, I ice for 15 minutes, then do an awkward dance in the shower, trying not to put pressure on my right side.
Cute shoes never fit my orthotics. I have to base every outfit around ugly shoes, which only reminds me of my illness. In my bag, I pack a pair of super-comfy sneakers, a surgical shoe, and lots of ibuprofen.
I've become good at giving presentations while sitting down. I hope clients see me as casual and relatable--not meek or lazy.
Before a work lunch, I have to ask: How far is the walk? Will we be seated right away? Internally, I'm giving myself a pep talk: You can do this, you can do this. If I'm already in a lot of pain, I'll excuse myself to the ladies' room to rub my foot and take an ibuprofen.
Back at work, I cancel or rearrange plans. I'm not afraid to lie: I'll beg to relocate a happy hour, saying I'm craving nachos; really, I need the spot's on-site parking.
Sometimes when I'm out, it's hard to focus on anything other than the sharp aches in my foot. If I'm about to go on a date and the pain is awful, I'll make a last-minute decision to put on my surgical shoe. This way it'll be obvious that I can't barhop or walk around.
Rest, hope, repeat. If the pain is really bad, it can prevent me from sleeping, which means it will be even worse tomorrow. I desperately hope to conk out soon.
For more information on chronic pain, including how to get the right diagnosis and how to lend support to a friend in pain, check out the December 2014 issue of Women's Health, on newsstands now.
What does your bladder need to do, send you smoke signals?
When you hit the restroom, do you regularly turn around and give what’s in the bowl a quick once-over before flushing? If you answered no, well, it’s time to start. That’s because the color, odor, and consistency of your urine—not to mention the way it feels when it’s streaming out of you—can clue you in to what’s going on in your body. Here, seven warning signs to be on the lookout for every time you go:
It Has a Sweet Scent
No, this has nothing to do with your dessert habits. “Sweet-smelling urine is often an important clue in the diagnosis of diabetes,” says Holly Phillips, M.D., a women’s health specialist and medical contributor for CBS2 News in New York City. And for people who know they have diabetes, the sweet smell can indicate that their blood-sugar level is not as under control as it should be.
You Notice Cloudiness
Consider it a tip-off to the presence of bacteria that could indicate a urinary tract infection (UTI). “The cloudiness comes from the excretion of bacteria and leukocytes, which are cells that fight infection,” says Phillips. Even if you otherwise feel fine and have no UTI symptoms, pay attention to this; it could be the only sign that an infection has taken hold.
There's a Pink or Reddish Color
Though red-purple hued veggies like beets and blackberries might be the culprit, the color can also indicate the presence of blood in your pee—not a good sign. That’s a symptom of a UTI, kidney stones, or in rare cases even bladder or kidney cancer, says Phillips.
It Smells Foul
Urine isn’t supposed to smell like roses, but if the stench is pretty foul (think: rotten fruit or the bottom of a pond), it’s your bladder’s alarming way of telling you there’s an infection, says Phillips. And like cloudy urine, it could be the only clue, so don’t blow it off.
You Notice a Burning Sensation
Stinging or even pain while you pee can be caused by a UTI or an STD such as chlamydia or gonorrhea, says Phillips.
That Feeling That You've Gotta Go Just Won't Go Away
This is a classic sign of a UTI, which causes the lining of your bladder and urethra to become inflamed and irritated, leaving you with the feeling of constantly having to urinate, says Phillips. It can also be a symptom of interstitial cystitis, a hard-to-diagnose condition that results in chronic bladder pressure or pain.
You’re Peeing Way More Than You Used To
You might be pregnant. Seriously, it’s an early sign triggered by hormonal changes that speed up blood flow from the kidneys, says Phillips. If you’re positively sure you’re not expecting and you also can’t blame it on an uptick in your consumption of alcohol or caffeinated drinks (caffeine and alcohol can make you pee more frequently), check in with your M.D. This could also signal diabetes or a tumor.
A man holds a girl as she tries to escape when she realised she is to to be married, about 80 km from the town of Marigat in Baringo County December 7, 2014. REUTERS/Siegfried Modola Some of the major health problems faced by women in developing countries are caused by "terrible" traditions that must be stopped, said the head of public health at the World Health Organisation .
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With the deadline looming to re-enroll in California’s insurance exchange, Kuei Lin Liu faced a tough question: Do I want to go through this all over again?
After a year of bureaucratic snags, data glitches and inexplicably dropped coverage, Liu wondered whether Covered California was worth the effort.
“I’m so frustrated right now,” she said. “I spent the last year trying to work out this mess.”
The 37-year-old Richmond resident first enrolled in the exchange last fall, when she left a senior accounting position at a big corporation and the benefits that came with it. With two daughters under 5 and a son due in May, Liu said going uninsured was not an option.
Cecily Liu, 37, with her three children – Nolan Lin, 6 months, Fiona Lin, 3, and Larissa Lin, 5 at their house in Richmond, Calif. The self-employed accountant said signing up her family through Covered California was a hassle (Photo by Heidi de Marco).
So Liu and her husband Qing Lin, a 45-year-old stay-at-home dad, signed up for a benefits-rich platinum plan from Blue Shield of California. With a projected income of about $90,000 from her tax prep business, they were eligible for a subsidy that covered a third of their nearly $1,600-a-month premium.
The plan wasn’t as generous as the coverage at her accounting job, but having most of the year virtually free to spend with her family was, to her, a fair trade.
Then the hassles began, said Liu, a CPA and native of Taiwan who immigrated to the United States in 1997 to attend college.
After applying in November 2013 for the Blue Shield plan, she didn’t hear back. With no response from the exchange or the insurer by Dec. 28, she panicked. She had her insurance broker submit another application.
The New Year came and went with neither a confirmation nor a bill from Covered California or Blue Shield. She had to pay for an ultrasound out-of-pocket — about $600, said Liu, who goes by Cecily in English. Fearful of giving birth without insurance, she shelled out about $1,200 for an off-exchange policy with Blue Shield that started on Feb. 1.
Shortly afterward, Liu received confirmation that her Covered California plan was in effect. Blue Shield agreed to apply the payment she had already made on the off-exchange plan to the exchange plan — but that took another month. The reason: Blue Shield had separate payment systems for off- and on-exchange plans.
“I actually visited Blue Shield in El Dorado Hills, their corporate office, to try and make them move the payments,” said Liu’s broker, Kevin Knauss.
Liu thought her problems were behind her after the company applied the payment correctly. Then, in May, her son Nolan was born.
Knauss contacted Covered California the day after his birth to add him to the family policy. When the enrollment data was submitted to Blue Shield, however, the rest of the family’s coverage disappeared from the computer record. It was reinstated –except for Liu’s older daughter Larissa.
That problem eventually was corrected but the policy started on the wrong date.
Jack Lin, 45, watches over three-year-old daughter Fiona Lin on Saturday, December 6, 2014. The family decided he would stay home to take care of the children instead of paying for daycare (Photo by Heidi de Marco).
Although Blue Shield covered the baby’s birth, Liu and Knauss had to hector the insurer and Covered California for two months to ensure Nolan and his siblings remained properly enrolled, they said. Liu even filed a complaint with the state Department of Managed Health Care.
“No one was willing to take responsibility. I told them… ‘You took my money and ran.’”
In late September, Knauss was checking online and noticed the family’s coverage seemed to have disappeared again.
After another round of calls they were back in the system. But all the stress resurfaced in November when the pediatrician’s biller called to say coverage couldn’t be verified for her younger daughter Fiona’s visit in July.
“It’s like history is repeating,” said an exasperated Liu, who fielded several similar calls in the summer, when she was trying to sign up her son. “It’s ridiculous.”
‘We can do better’
Neither Covered California nor Blue Shield would comment specifically on Liu’s case. But they and consumer advocates both underscored the need to improve “the customer experience.”
Covered California is “going to have to not just promise but provide a better experience for people in renewing and signing up for coverage,” said Anthony Wright, executive director of Health Access California, an advocacy group.
Despite glitches, Covered California’s first enrollment period, which started in October 2013, was a success compared to the rollout of its federal counterpart operating in 36 states, healthcare.gov. Enrollment this year began on Nov. 15 and runs until Feb. 15, and California’s exchange appears to be going more smoothly. In the first month, 144,178 people selected a health plan, nearly a third more than signed up in the first month in 2013, according to Covered California.
Exchange officials say they spent the summer making improvements, bolstering technological infrastructure and adding staff.
“I’m sure there are people who have had a negative experience that won’t come back,” said Roy Kennedy, a spokesman. “We ask that they come back and let us try to make it up to them. We know that we can do better.”
A Blue Shield spokesman said in an email that during the early implementation of the health reform law, “some customers did not experience the level of service they deserve.”
“We have and will continue to work closely with Covered California and our vendors to address these issues and streamline the process in 2015 and beyond,” said the spokesman, Sean Barry.
Cecily Liu, 37, feeds her 6-month-old son Nolan Liu. She had trouble adding him to the Blue Shield insurance plan she purchased through the state health exchange (Photo by Heidi de Marco).
A Cautious Decision
For months, Liu went back and forth about whether to re-enroll.
She found herself thinking, “It’s just too much work. I don’t have time for that.”
If she took no action, she and her family would be automatically re-enrolled in their Blue Shield platinum policy. The pre-subsidy premium would be $1,699 a month, a $116 hike.
Days before the Dec. 21 deadline for coverage beginning in the New Year, Liu cautiously decided to give Covered California another try. Instead of a platinum plan, she picked a slightly less rich gold one because she doesn’t expect to need as much care as this year when she had the baby. She will pay $1,482—or $949 with the tax credit.
Liu’s hoping the switch proceeds without difficulties but if the service isn’t substantially better, she’s buying private insurance off exchange next time.
“I don’t want to deal with that headache again,” she said.
Starting next year, the government will offer some seniors enrolled in private Medicare Advantage insurance an opportunity to leave those plans if they lose their doctors or other health care providers.
The Medicare Advantage policies cover 16 million seniors and are an alternative to the government-run Medicare program. Medicare Advantage members can only get care from a network of providers under contract to participate in their plan. They must remain in their plans for the calendar year, with some rare exceptions, but losing their doctor has not been among the permitted reasons.
But if certain conditions are met, officials at the Centers for Medicare & Medicaid Services will create a special three-month enrollment period following network changes “considered significant based on the [effect] or potential to affect, current plan enrollees,” according to an update to Medicare’s Managed Care Manual. During that time, they could join traditional Medicare or another Medicare Advantage plan whose provider network includes their doctors.
“If CMS does not prohibit midyear network terminations then a special enrollment period is the next best thing for beneficiaries,” said David Lipschutz, senior policy attorney at the Center for Medicare Advocacy, a nonprofit law firm that works on behalf of Medicare patients.
Clare Krusing, a spokeswoman for the trade group America’s Health Insurance Plans, said banning network changes would hamper provider contract negotiations, which occur throughout the year, and could ultimately reduce the variety of available plans.
She said “CMS has taken a balanced approach” in dealing with seniors’ needs while assuring flexibility for health plans.
But Lipschutz said no one seems to know what the “significant” network changes are that will trigger the special enrollment opportunity.
Medicare spokesman Raymond Thorn said the agency will make that “case-by-case” determination based on the number of beneficiaries affected and whether they received adequate and timely advance notice, the size of the plan’s service area, when during the year the provider terminations occur and other factors. He declined to provide details on the minimum number of beneficiaries, providers or service area size that would be necessary. Once Medicare decides that plan members should be allowed to leave their plan, the agency will require the plan to notify its members about their new options.
Only CMS will make a determination of the need for this provision. Individual beneficiaries who are concerned after their doctor is dropped from a plan cannot request the special enrollment period, Thorn said. That is different from how Medicare handles some other mid-year changes in these policies. Beneficiaries can request a special enrollment if they move into an area where their plan is not available, become eligible for Medicaid, or move into a nursing home, among other reasons.
Last year, UnitedHealthcare cut thousands of physicians from its Medicare Advantage plans across the country, including 2,200 physicians in Connecticut. At town hall meetings held by the Fairfield County, Conn., Medical Association, executive director Mark Thompson said angry and fearful patients told “heart-wrenching” stories about their experience.
“They were being forced to leave their doctors and there wasn’t anything they could do about it,” he said. “They couldn’t go to another plan and they couldn’t go back to traditional Medicare.”
The only option at the time, he said, “was to go to another doctor who they had no history with.”
UnitedHealthcare spokesman Terence O’Hara said next year its enrollees “nationally will continue to enjoy a broad selection of doctors that can provide the right care where and when it is needed.”
The special enrollment option comes after officials established stricter notification rules for network changes that also take effect Jan. 1, 2015. Insurers must tell CMS at least 90 days before instituting network “significant” changes. The rules also recommend that insurers provide more than the required 30 days’ advance notice to beneficiaries. It should include the name of the provider being terminated and how members can request continuation of ongoing medical treatment from that provider.
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