Happy Holidays from Patient Loving Care

Now, Here’s One For You

Last time, we suggested a question for your doc - “what happens next?” – as a way to really get to the nuts and bolts of what you need to know about your diagnosis. Today we’ve got a great pop quiz for you, the patient.

“What do you think is going on?"

I was at the doctor’s office recently because my teen had fainted on the job. The doctor (actually it was a third year medical student) tossed out some questions to try and figure out why, but nothing was a match. Then, as an afterthought, I mentioned we were worried about her diet. She wasn’t eating right and drinking an awful lot of tea. Suddenly, the diagnosis became crystal clear. Turns out tea can quickly rob your body of iron, leading to anemia and, therefore, fainting. A simple blood test confirmed she needed to cut down on the Darjeeling and take a supplement to bring her iron levels back to where they should be.

Doctor-turned-patient Roni Zeiger told his own story here about arriving in the emergency room with bleeding in his brain. He used his clinical skills to relate his symptoms in a succinct and articulate way to the attending physician, just like we preach here at patientlovingcare.com. Afterward (and thankfully the bleeding issue proved to be minor and there was an “afterward”) Dr. Zeiger contemplated why he hadn’t gotten more personal with the staff.

The summary he gave was “brief, clinical and effective,” he wrote. “It told the doctors what they needed to know, but it was missing two important things. First, it lacked humanity. Why didn’t I tell my doctors that I was scared, that I was worried about the future of my wife and children?...Second, I didn’t tell the doctors all of my symptoms and the events surrounding them. Without even thinking about it, I only told them what I thought was relevant. In fact, a common mistake we doctors make is getting too attached to the first diagnosis we think of, and then failing to ask about other symptoms, other clues.”

So how do you distinguish between adding relevant personal details and rambling on with TMI? Well, a good doctor will know how to tease out the info that really matters. But practicing patientlovingcare.com’s commandments to be succinct and articulate is a good place to start. Take a moment to collect your thoughts before diving into a story in the exam room. See if you can get to the heart of your comment in just a sentence or two. Or just test out a possibility by saying “this might not be relevant, but what about… (tea, for instance, or whatever is on your mind).”

Opening up a little just might be what the doctor ordered.

If Nothing Else, Ask…

“What happens next?”

If there’s one question that will really get to the heart of what’s going on with your health, that’s the one to ask your doctor. It’s a great way to clarify information if your doctor just delivered less than good news and your head is spinning.

If you feel that you understand the big picture, asking “what happens next?” will break down a diagnosis into smaller steps. It can prompt a conversation about scheduling and timelines, how you may feel as things progress, or treatment options you may be able to choose at each step in your care.

This little gem of a question was tucked into an enlightening list from Reader’s Digest entitled “50 Secrets Your Nurse Won’t Tell You”. Author Michelle Crouch compiled the responses from nurses across the country.

Here’s the excerpt from #45, contributed by Wisconsin nurse Kristin Baird:

At the end of an appointment, ask yourself: Do I know what's happening next? If you had blood drawn, find out who's calling who with the results, and when. People assume that if they haven't heard from anyone, nothing is wrong. But I've heard horror stories. One positive biopsy sat under a pile of papers for three weeks."

A simple "what happens next?" can put everyone involved on the right track.

Being An Expert Outside Your Field of Expertise

Everyone within arm’s reach of a keyboard has felt the need to pen a tribute to Steve Jobs. And I had no intention of joining the homage-fest to the Apple co-founder, though I’m fascinated by his creative mind and visionary success. Then a paragraph in Rolling Stone magazine’s tribute jumped off the page:

As his illness worsened, Jobs found his life narrow even further. He didn’t go out at night, never accepted awards, gave no speeches, attended no parties. Instead, he holed up in his home in Palo Alto, where he hung out with his family and learned everything he could about cancer- and how he might beat it. “He knew more about it than any oncologist,” says his old friend Larry Brilliant, who is an MD. His body grew thinner and thinner, and he took a six-month leave from Apple to have a liver transplant.

-Jeff Goodell, Rolling Stone, Oct. 27 2011

We all know how the story ends - dead at 56.

So the thing to honor about Steve Jobs is that he was one of us. He was a patient, desperate for knowledge. In the end, his condition put him on an even playing field with everyone who’s ever been on the receiving end of a diagnosis. The lesson is in how he spent his time – education, research, bringing his own facts into consultations, becoming an expert in his own disease. For every patient who does the same, it’s a life well lived.

Long live Steve Jobs.

(Photo: Rolling Stone)

A Spunky Guy In Richmond I'd Like To Meet

As I write, the five-hour drive to Virginia would land me four hours too late to meet Bob Wendell. A shame, because he’s 92 and a classical bass player-turned harmonica recording artist. Plus he’s the compelling example on a panel discussion this evening about today’s fragmented healthcare system - a system that could debilitate or even kill a senior who isn't savvy enough to keep medications and doctor’s orders straight. In other words, a senior who's not Bob Wendell.

His story was originally told here in Richmond Magazine.

Wendell’s litany of health concerns includes five strokes, swallowing problems that mean he eats some food and gets the rest through a feeding tube in his stomach, and caring for his wife of 30 years who has advanced Alzheimer’s. Wendell’s search for second opinions and active participation in his own care mean he continues to lead a full and happy life. His ability and desire to take charge of his health is a great lesson that he teaches to neighbors in his senior building, where he’s president of the residents association.

Tonight’s event at WCVE public radio brings together experts to elaborate on the magazine story. It’s a public discussion which will be recorded and broadcast on October 16 here and over the air.

And it all rings so true with PatientLovingCare.com’s central purpose – to provide patients and caregivers the tools they need to navigate the medical maze. In the spirit of Bob Wendell and others like him, we hope our doctor’s memo is a start and inspires you to take charge of your own care.

Some day, it could save your life.

(Photo: Bob Wendell, RichmondMagazine.com)

Newsy Tuesday

Welcome to Newsy Tuesday. Pour yourself a cuppa whatever you'd like and pick from amongst this collection of good reads. It's like a mini gym visit for your mind - refreshing!

Autistic and Seeking a Place in the Adult World
Here's an expertly written story from the New York Times, told from the perspective of a New Jersey boy. Tender without being maudlin.

The Creative Brain on Exercise
I just may do a full-blown post on this one, although at patientlovingcare.com I'm preaching to the choir about the mental benefits and disease-fighting power of exercise.

New Drug-Free Treatment for Depressed Teens
If your life includes a teen with mental health issues, you know all about the medication high-wire balancing act. 3GenFamily blogs about a study on the effectiveness of non-pharmacy treatment. Hooray for research!

A Story about Finding Assisted Living - Part I
This is a British blog with a name similar to ours. Unlike PLC, however, author Linda Abbit focuses solely on eldercare issues. I'm eagerly awaiting part II of this series on moving Aunt Sally to assisted living.

Enjoy, and bottoms up!

Show Me Your Fridge, I Dare You ;p

At a fashion shoot, photographers will occasionally step away from their professional cameras to take a cheap snapshot. It gives a quick, fresh perspective and it’s an easy way to spot adjustments to lighting, background and pose in order to get that perfect shot.

So, what if you used the same technique with your life: snapshots to get a fresh perspective? I dare you – right now- to go and snap a picture of the inside of your fridge. Since in my fridge you might spot that black, fuzzy thing at the back of the bottom shelf, I’ll let words describe my picture:

• half a cake
• apples
• leftover fries
• milk
• homemade mac and cheese

Not too bad, but there’s probably room for improvement. Knowing you might want another peek soon, I’ll shop a little wiser today and be able to show off salad fixings, some more fruit and maybe some OJ next time.

Even if you're not going public with such info, taking a snapshot is a great idea to make us more aware of our daily choices. In fact, the idea comes from a group of researchers who used cell phone pictures as a creative way to combat disease.

Since a major cause of chronic disease is individuals’ everyday health-related decisions that affect long-term health, the researchers gave families cheap cell phones for the purpose of snapping pictures related to day to day activities. Simply drawing attention to what went on over the course of the day prompted families to think about what easy adjustments they could make to improve their health. Counselors also reviewed the information with the families and added nutrition education and health tips to further encourage a healthier lifestyle. (Find the full study here in the Journal of Participatory Medicine.)

The premise again is this: A major cause of chronic disease is individuals’ everyday health-related decisions that affect long-term health.

Put that up behind a fridge magnet and ponder it.

The Brakes On the Wheelchair

Last month, I felt quite clever but at the same time irritated that by the third visit to the hospital we were able to navigate the long walk from the front lobby to ICU without a map. After all, I didn’t sign up for this stint of several visits a day. It was involuntary enlistment.

Nevertheless, in such circumstances you learn the ropes and develop a routine. Being a quick study conserved my energy for more important things. What I noticed though, was how attentively the Cleveland Clinic hospital where my father was admitted eased the stress of family visits with simple courtesy.

Staff at all levels seemed trained to be mindful of visitors. Recognizing – and alleviating - bewilderment is apparently a priority. You get a map every time you check in. Stand still in a hallway for just a moment and staff – whether housekeeping, a tech or a doctor – ask how they can help to direct you. Everyone seemed to understand that – with the possible exception of the maternity floor – every visitor in the building wished they didn’t have to be there.

My first inkling I'd be catered to in this way came at the entrance, where visitor wheelchairs are stashed . On my first visit after arriving in town, the usually abundant supply was gone but a valet traipsed through two departments to retrieve one for us. Then, after we arrived at ICU, I realized my ignorance with this basic piece of equipment – fumbling at first until an aide pointed out the brake that would keep the wheelchair from scooting across the room, landing the occupant squarely on the floor (!).

Like everything else in healthcare, treatment of patient families is institutionalized and codified. In fact, my research on the subject turned up a press release from the Disney Institute announcing a new training module on family interaction for the purpose of increasing hospital satisfaction ratings, which are about to become a matter of public record due to new government regulations.

But only so much civility can be taught in a seminar. At a hospital where veterans lead by example and empathy is valued, painful memories of a last hospital stay are softened by the kindness of strangers.

The Empty Blog

There's no need to write up a post today.

Just click here for a must-read inspiring story.

When you're done, you'll suddenly feel the strength to move mountains.


(Image via Facebook. Painting by Margaret Stineman.)

Lace Up That Trusty Pair of Chucks

A trip to Ohio last week meant a rare chance to see my BFF and blogging partner Diane “in real life” as we say online. It was great to spend some time with her family! Two of the many fantastic things about the Buckeye State are her husband Dave’s grilling skills (he used to do it professionally – working his way through college) and that pitcher of margaritas that is was in Diane’s fridge.

I also brought back a souvenir for PatientLovingCare readers that I picked up on the front page of Friday’s Cleveland Plain Dealer. I immediately bookmarked this story about walkwithadoc.org and tracked down the organization website to share here.

Walk With a Doc is the brainchild of a physician who found that patients often had trouble getting started on an exercise program but were more than willing to take a walk at a local park if their doctor invited them to come along with him. Soon after he started the program in Columbus, Dr. David Sabgir had 100 people joining him for Saturday morning strolls.

Dozens of doctors have signed on since, agreeing to organize walks and socialize alongside regular folks who like the group support and the idea that healthcare providers are nearby as they tentatively step out for a fitness program. The docs are required to begin with a short health presentation and be available to chat for a 45 minute stroll.

It is said that one hour of walking adds two hours to your life expectancy. Who could refuse that kind of return on investment? I was curious though, what motivated the doctors to sign on for this busman’s holiday of having their patients join them for their workout time. Turns out it’s just good marketing. Sponsoring a local Walk With a Doc builds good will and brings attention to the docs as community leaders.

Click here to find a group near you. Or contact your favorite healthcare provider to suggest starting up a chapter – it’s win/win for both of you.

If I Told You To, Would You Believe In Yourself?

Today we dust off our soapbox on the topic of education. If you are caregiver to a child, you know the unquestionable importance of learning success despite medical obstacles.

What prompted this post was an opinion piece in the Philadelphia Inquirer with the attention-grabbing headline “Self-esteem exercise boosts minority teen achievement.” Despite my initial suspicions, it was not at all a rehash the ‘90s self-esteem psychology that I’ve seen employers blame for a young workforce ill-prepared to learn from constructive criticism because they’ve been raised on a strict diet of praise.

Rather, the article is about the profound power of expectations. Author David Kirp (a Berkeley professor of public policy) says that as early as kindergarten, a disproportionate percentage of African-American boys believe they lack the innate ability to succeed in school. And so they don’t. The piece goes on to cite middle school and college studies that, in a nutshell, suggest that when minority students are a.) told stories of upper classmen who succeeded in spite of feeling at first intimidated and unworthy or b.) given a primer on how “effortful learning” rewires the brain, the result is that test scores and grades measurably improved compared to control groups.

I’ll leave the education and minority-achievement debates to others. But I’ll take this opportunity to speak out on how chronic illness affected my own child’s expectations at school. His symptoms became progressively worse as he moved through junior high. A straight-A student in elementary school, he started to believe “I used to be smart, and now I’m stupid.” When things hit rock bottom, he was seeing several counselors outside of school. My child, his parents and school staff were at wits’ end. But the best thing any of us did - and what he may be most grateful for today - is when people told him he was wrong: he wasn’t stupid, he was just temporarily having trouble while we struggled to get neurological problems under control.

I am still very proud of the essay my child submitted with his college application. The third paragraph mentions a science teacher who recommended he be moved down from college prep to general ed classes because of his medical condition. “I set the goal to ‘prove him wrong’ and I was able to stay in college prep level classes…. I had to study harder and harder just to squeak by. Finally my hard work started to pay off and I was able to bring up my grades and do well on the SAT. For a while, I thought I wouldn’t be able to go to college and now I think I will have no problem earning a four-year degree.”

Fortunately, his college of choice agreed, and he is well on his way to succeeding at earning a bachelor’s degree.

Figuring out where to set the bar on expectations can be difficult. The wrong decision can be disastrous. But I can’t think of any circumstances where setting a goal for improvement is a mistake. Illness, minority status, nor intelligence tests can ever take into account the miraculous power of a child inspired to believe he can “prove them wrong.”

The Truth? You Can't Handle the Truth!

I’ve come across a rash of examples lately involving people who've felt misled in conversations with their doctor. We’re not talking egregious medical malpractice here. But the choice of words in the course of discussing treatment left the patient feeling let down as things played out.


The first example came from a newspaper column that addressed this very issue from a doctor’s perspective. The patient had heard “perfect vision.” The eye surgeon apparently had been alluding to “near perfect” vision, and ultimately lost the trust of the man in his care. How often do you ask your doctor to clarify things? Do you ever repeat back what you just heard to make sure you’re both on the same page?

The next example was a burn victim (a motivational speaker whose inspiring story I’ll save for another post) who didn’t fully comprehend the meaning of “we’ll reconstruct your face” as she lay bandaged up after a horrific car accident. Have you ever jumped to optimistic conclusions only to be later disappointed by medical results?

Then last night over dinner, a friend mentioned her own recent experience: Her rather routine outpatient procedure was halted when a red flag came up in pre-op testing. Over the course of a couple weeks, she was sent for scan after scan, all the while being told “don’t worry, it’s probably nothing.” She finally confronted the doctor with a possible condition they were trying to rule out. Something a relative had died from. The doc finally ‘fessed up. Yes, that’s what we’re looking for, he said. To everyone’s relief, everything came up clear. What would you have preferred? The unblinking truth that something terrible was suspected? Or vague answers to keep the “what if” monster from coming out from under the bed each sleepless night?

Leave a comment and share your own experience.

Round 2: The Family

Well, my job is totally consuming, my husband is working full time, we have a daughter living at college and a seventeen year old son that is finishing up his senior year and getting ready to begin college. There are all the end of year activities of his senior year and just trying to keep up with life. Anyone who has gone through the experience of your child graduating high school and going away to college knows the time and stress involved in this. The craziness starts around Feb. when the FAFSA (Federal Financial Aid) needs to be submitted. After that, the decision is made as to what college will get your child.

Around this time my mother started to complain about occasional pain in her upper arm and into her jaw. Knowing these are cardiac symptoms we quickly encouraged her to see her cardiologist. Within a month (in March) she went in for a heart catheterzation. Before she went in, we heard the patient in the next cubical had to stay because she needed to have open heart surgery. I silently bowed my head and said a prayer for her and was thankful that my mom was not in the situation. Within minutes my mother went in for the procedure and within an hour, little did we ever imagine, those words that were spoken to her neighbor were being spoken to her. Yes, my mother was going to stay in the hospital and have open heart surgery within 48 hours. I remember feeling numb and thinking, "No, this is not a good time." Soon I realized that there really is no good time for this. She went to her room and a parade of doctors came through her room and she had more tests than one could imagine. My brother came home to see her and stay with us for the long wait of surgery and beyond. Once again, our family was all together to deal with this crisis together. What a wonderful support system! I had memories of her hospitalization in 2007 when we thought we had lost her(see post dated Feb. 21, 2010). Going in to see her, the sound of the ventilator was very loud and all the tubes, gadgets and IV's were overwhelming, even for a nurse to see. What would be in store for us? Would she be able to breathe on her own again? Well, no time is the right time, but for some reason we manage to make it work because the power of love gives us the ability to do more than we can imagine.
She is now home. Weak and recovering, but around those that love her the most-her family!

Reverent and Irreverent Mother’s Day Prayers, Equally Sincere

Some time ago, when a friend was expecting her first child, I came across a beautiful prayer online. I formatted it with a picture, framed it, and proceeded to make everyone at her baby shower cry. I’ve given it to every pregnant friend ever since. (What I don’t know is who wrote it. If you’ve got any information, please let me know.)

What a perfect thing to post on Mother's Day.

Then last week on Facebook, someone posted Tina Fey’s prayer for her daughter. If you’re not one for irreverence, please click away about half way through this post. If you stick around, and if you have a daughter or a son, you just might find yourself laughing and crying all at the same time.

Happy Mother’s Day from PatientLovingCare.com.

Special Angels

Author unknown

Once upon a time there was a child ready to be born.
So one day he asked God: They tell me you are sending me to earth today
But how am I going to live there being so small and helpless?

Among the many angels, I chose one for you.
She will be waiting for you and will take care of you.

But tell me, here in Heaven I don’t do anything else but sing and smile
And that is enough for me to be happy

Your angel will sing for you and will smile for you every day.
And you will feel your angel’s love and be happy.

How am I going to be able to understand when people talk to me
If I don’t know the language that men talk?

Your angel will tell you the most beautiful and sweet words you will ever hear
And with much patience and care your angel will teach you to speak.

And what am I going to do when I want to talk to you?

Your angel will place your hands together and will teach you how to pray.

I’ve heard that on earth there are bad men. Who will protect me?

Your angel will defend you even if it means risking its life.

But I will always be sad because I will not see you anymore.

Your angel will always talk to you about me and will teach you the way
For you to come to me even though I will always be near you

At that moment there was much peace in Heaven
But voices from earth could already be heard,
And the child, in a hurry, asked softly:
Oh God, if I am about to leave now, please tell me my angel’s name.

Your angel’s name is of no importance.
You will simply call her “Mom.”

Tina Fey’s Prayer for her Daughter

First, Lord: No tattoos. May neither Chinese symbol for truth nor Winnie-the-Pooh holding the FSU logo stain her tender haunches.

May she be Beautiful but not Damaged, for it’s the Damage that draws the creepy soccer coach’s eye, not the Beauty.

When the Crystal Meth is offered, May she remember the parents who cut her grapes in half And stick with Beer.

Guide her, protect her

When crossing the street, stepping onto boats, swimming in the ocean, swimming in pools, walking near pools, standing on the subway platform, crossing 86th Street, stepping off of boats, using mall restrooms, getting on and off escalators, driving on country roads while arguing, leaning on large windows, walking in parking lots, riding Ferris wheels, roller-coasters, log flumes, or anything called “Hell Drop,” “Tower of Torture,” or “The Death Spiral Rock ‘N Zero G Roll featuring Aerosmith,” and standing on any kind of balcony ever, anywhere, at any age.

Lead her away from Acting but not all the way to Finance. Something where she can make her own hours but still feel intellectually fulfilled and get outside sometimes And not have to wear high heels.

What would that be, Lord? Architecture? Midwifery? Golf course design? I’m asking You, because if I knew, I’d be doing it, Youdammit.

May she play the Drums to the fiery rhythm of her Own Heart with the sinewy strength of her Own Arms, so she need Not Lie With Drummers.

Grant her a Rough Patch from twelve to seventeen. Let her draw horses and be interested in Barbies for much too long, For childhood is short – a Tiger Flower blooming Magenta for one day – And adulthood is long and dry-humping in cars will wait.

O Lord, break the Internet forever, That she may be spared the misspelled invective of her peers And the online marketing campaign for Rape Hostel V: Girls Just Wanna Get Stabbed.

And when she one day turns on me and calls me a Bitch in front of Hollister, Give me the strength, Lord, to yank her directly into a cab in front of her friends, For I will not have that Shit. I will not have it.

And should she choose to be a Mother one day, be my eyes, Lord, that I may see her, lying on a blanket on the floor at 4:50 A.M., all-at-once exhausted, bored, and in love with the little creature whose poop is leaking up its back.

“My mother did this for me once,” she will realize as she cleans feces off her baby’s neck. “My mother did this for me.” And the delayed gratitude will wash over her as it does each generation and she will make a Mental Note to call me. And she will forget. But I’ll know, because I peeped it with Your God eyes.

Amen.

(Photo: flavorwire.com & American Express)

The Pleasure of Your Company Is Requested...

A fellow blogger, Carolyn, recently wondered aloud why so many people visit her blog, yet so few comment.

“…to me visiting a person's blog is like visiting their home. You always acknowledge the person for allowing you into their home and you should thank them for taking the time to host you. If you are really into the social do's and don'ts, you even try to bring a small gift to show your gratitude or appreciation for them hosting you. That's what comments are like to me...my way of saying thanks for taking the time to share your "whatever" with me.”

In response, this self-described “comment ho” got 118 comments! (If you're not familiar with the term, ask the youngest blogger you know - privately ;) )

I will admit I love to lurk blogs, and rarely comment. Since becoming a blogger, though, I've come to understand how commenting makes the world a better place, and I’m starting to do it more often.

So here’s a challenge for you – don’t be shy! We’d love to know if you’ve used the free Patient Loving Care doctor’s memo. How did it go? Did it improve your care? Did anyone on your health care team comment on it? (FYI, our blog is moderated and posts appear after a quick approval period.) If you’re not comfortable publicly commenting, please send us an e-mail.

We’ve also cooked up a great incentive for taking the time to introduce yourself to us. We are in the final stages of producing an extended version of the PLC Doctor’s Memo – it’s an e-book outlining in detail how to research, evaluate and choose a new doctor. If you’d like to be one of the first to have a copy by becoming part of our review team, please let us know. We are looking for folks who will respond to a few survey questions with detailed, constructive answers to make the book as user-friendly and useful as possible before we publicly launch the final product. We’ll be ready to provide more details soon, but please let us know if you’d like to be put on the list for a test-drive!

Expense of Learning- Part II

In the last post, I gave a quick tutorial on the process I use to decide whether it’s wise to part with my money when it comes to healthcare advice for sale. Now it’s time to dig into the details. Whether it’s a book, a classroom or online course, a members-only website, or a coach or counselor you’re considering hiring, there’s a lot you can do that amounts to a literary background check. It’s not hard to do a little good research, and you’ll soon know whether the knowledge is worth the cost.

When you’re researching a particular offer, jot down some notes and keep a running tally of your thoughts. Use the evaluation suggestions below as a guide.

1.) NAYY (It’s Not a Horse Laugh)
If you come across the offer on a blog, the site must disclose if its owners benefit financially by recommending the product (often indicated by the words “compensated affiliate”) or if it’s an unbiased referral by someone who gains nothing by promoting the resource (sometimes indicated by the playful non-legalese disclaimer “NAYY” which means “no affiliation, yadda yadda.”) Both scenarios have their advantages – a compensated affiliate may believe in a product strongly enough to put its reputation on the line, while an unbiased referral may be more likely to point out drawbacks of a product.
Things to Note: Will the person doing the recommending make money if you buy?

2.) Reputation – Who’s Recommending?
Do a search on the blog author or organization recommending the item and evaluate what comes up. Is he referenced in established publications or websites? Or do only obscure, less-than-polished sites pop up? (An investment in a well-designed, professional webpage is a one indication of someone who cares about professional reputation)
Things to Note: Does the recommender appear to care as much about maintaining a professional reputation as closing the sale?

3.) Reputation- What’s Recommended?
Find out all you can about the author or creator of the product you’d like to buy. Check with your library and do a look-up on Amazon to see the depth and extent of the author (or instructor’s) experience. Amazon includes professional reviews (they’re first – above the customer reviews) which can provide detailed and thoughtful summaries of what you’ll be buying. I’d recommend scanning customer reviews for general themes of likes or dislikes, but remember that anyone can post a customer review without demonstrating much knowledge the product.
Things to Note: Jot down the most detailed product elements that are critiqued to get an idea if it will have a lot or a little information about specific topics that interest you.

4.) Your Gut Reaction
There’s a lot to be said for intuition. If you’re reading a website, explore it with a critical eye and pay attention to the “huh?!?” factor. If the content or even  the look of the site makes you question the motives of the seller, it’s a red flag. (Nothing’s too silly – believe it or not, too many exclamation points drives me nuts – whoever does that can’t be trusted!!!!!) ;)

If it’s a friend making the recommendation, think about all the traits you share – and don’t share – and your differing styles when it comes to handling healthcare issues. If your gut reaction is “if she likes it, then I’ll like it” then by all means go ahead and explore further. If not, well, proceed with caution.

When you’re done jotting notes, tally up the pros and cons. You should have a much clearer picture of whether you’re getting a good buy, or better off saving up for something else.

The Expense of Learning (Part I)

When serious illness hit my child, I was desperate for knowledge. Thank goodness there was a lot of free advice to be had on the internet and (critically important) I had an understanding of how to evaluate the source and credibility of what I was reading. Even still, Googling for information is time-consuming and piecemeal. And there are bonafide experts on every condition imaginable who gladly offer all (or most) of what you need to know is one package… for a price.

The dilemma is knowing when it’s smart to take the offer. When is the knowledge worth the cost? I did a little sleuthing on some current caregiver-related offers and thought I’d share my process for deciding how and when to spend my money.

First, a friend forwarded to me an e-mail advertising the release of a book on caring for a loved one with Alzheimer’s, put out by Johns Hopkins University. Price - $50.

Next, I came across a blog mentioning that the New York Times offers educational courses and an upcoming topic is eldercare. For a cool $90, there’s a two-week online course beginning at the end of this month.

Although I have no affiliation with either Johns Hopkins or the New York Times, I will say I’ve been a fan of Johns Hopkins medical center ever since we took our child there for an enlightening second opinion six years ago. That, along with their venerable reputation, is a point in their favor. Next stop, my favorite search engine to see what it turns up about the Johns Hopkins author. Turns out Dr. Peter Rabins also offers videos aimed at Alzheimer’s caregivers, so kudos for multi-media experience and the chance to see a snippet of him in action. Finally, he turns up on Amazon (with book excerpts and reviews) and at my local public library. Checking out a previous title might be the best indicator of whether that $50 will be well spent for his new book.

The New York Times webpage gave surprisingly little information on the content and format of the class. But, again, one would hope that a distinguished institution which stakes its reputation on providing a high quality product would come through – especially for that price.

Here at Patient Loving Care, we hope to debut a (reasonably priced) e-book in the near future. And we promise it will be well worth your while.

Meantime, our next post will be the Expense of Learning Part II: the nitty gritty of analyzing how and when it’s smart to invest in medical caregiving knowledge.

Marriage: It's Really Hard

My husband and I recently sat together over a glass of wine and took stock – we’re rounding third and headed for home on the mortgage; we’re proud parents of one successful college student and his younger sisters, all of whom dream big, just like we taught ‘em; we’ve both managed to stay gainfully employed through this Great Recession. Then we chuckled at how we’ve lived a wonderful life together, but one completely different than what we imagined twenty years ago this week when we said “I do.”

Nobody told us “in sickness and in health” doesn’t just apply to the bride and groom – it’s a catch-all phrase for the stress put on a marriage when nursing elderly parents through cancer (and ultimately losing one of them to the disease) and for the enormous drain on family resources caused by a child’s chronic medical condition.

Our son’s health challenges were no small part of our life together gone off script. Thankfully, our marriage survived, strengthened in fact, through the adversity. What doesn’t kill you, as they say, makes you stronger.

And so with hard work and lots of grace, we’ve survived and thrived.

Happy anniversary, honey.

Needle & Thread

Are you crafty? I have this weird compulsion to sew even though the result is rarely anything that’s publicly wearable. For all my efforts, it never fails that my garment “looks a little home-sewn” as they say on Project Runway.

But that doesn’t stop me from envying those who can work magic with fabric – I just counted up and I have 133 sewing blogs bookmarked! If you find sewing or needlework calming, the internet is a goldmine for advice and projects when you need to take a moment from chaotic daily life for something you really enjoy. And it’s a great resource if you’re looking for projects that can make life easier (or just more fun) for someone undergoing treatment.

A quick online search turns up a number of free online tutorials for chemo caps and preemie blankets. But look a little deeper and you’ll also find instructions to make hospital gowns (who wouldn’t want to trade those dreadful, flimsy hospital-issue gowns for something personalized and snazzy!) and even a knitted wig (ok, this one was a Halloween project, but I told my daughter if I ever find myself in the chemo ward, I’d like her to make me one).

A very special blog I have bookmarked is SewPaula. This one is written by the mother of a disabled child who is expert at adapting patterns to accomodate her daughter's wheelchair along with modifications to access ports and her feeding tube. Paula is a blessing to her children (she sews beautiful clothes for all her kids) and to other sewists looking for directions on adapting garment patterns for special needs.

So don’t fear Heidi Klum’s brutal reality show critiques like those running through my head. Whether you craft for yourself or for others, take heart with a few words of wisdom on what they used to call “womanly arts”…

“A creative mess is better than tidy idleness.”
                                                            ~Author Unknown

“Take your needle, my child, and work at your pattern; it will come out a rose by and by. Life is like that - one stitch at a time taken patiently and the pattern will come out all right like the embroidery.”
                                                                    ~Oliver Wendell Holmes

“Hem your blessings with thankfulness so they don't unravel.”
                                                                                 ~Author Unknown

(photo courtesy tvguide.com)

Foody Friday: Eating Affordably

Money is bound to be tight for families dealing with a health crisis or chronic illness. So once hospital visiting hours are over for the day or you're coming home from yet another treatment appointment, you're caught in a trap: too exhausted to cook but too broke to eat out yet again.

Whether you like to cook, or view it as a nothing but a necessary chore, now is not the time to skimp on meals. Sure, your stomach is too tied up in knots to enjoy a meal, but neglecting nutrition is one of the worst things you can do when your energy is already sapped by health worries.

I'm a fan of Rachael Ray (yeah, I know... you either love her or you hate her). But even if you're not, you can find many of her famous 30-minute meals for free online. I also like 30 Day Gourmet for meals that freeze well. If you have some downtime to browse, check out the American Dietetic Association page with tips on eating right affordably.

Meanwhile, try this recipe that's one of my favorites from a long-ago issue of Family Fun magazine. What's great about chili is you can leave out anything you don't like and add what you love. This is the quickest chili recipe I've ever seen - it says to simmer for up to two hours, but I've served it after only 20 minutes on the stove. It's great right out of the pot, even better left over, and freezes beautifully.

Chili (from Family Fun Magazine, circa 19??)

2 15-oz. cans kidney beans
1 medium green pepper
2 medium onions
2 or 3 cloves garlic
4 Tbsp. olive oil
1 ½ lbs. ground beef
1 ½ to 2 Tbsp. chili powder
1 ½ tsp. cumin
1 ½ Tbsp. Flour
3 cups chicken or beef broth
1 28-oz. can crushed tomatoes
1 Tbsp. worcestershire sauce
2 Tbsp. steak sauce
½ to 2 cups additional stock, tomato juice or water, if needed.

1.) Brown ground beef. Remove from pan.

2.) Pour 3 Tbsp. olive oil into skillet and add diced peppers and onions. Saute on medium heat for six minutes. Stir in garlic and cook 2 minutes more.

3.) Sprinkle chili powder, cumin and flour over the vegetables and sauté for one minute more, stirring nonstop. Stir in 1 cup broth and cook for one minute.

4.) Put browned meat in stock pot and add contents of skillet, along with crushed tomatoes, Worcestershire and steak sauce. Stir in remaining 2 cups of broth and beans.

5.) Gradually bring chili to low boil, stirring occasionally. Reduce heat slightly and cook chili, covered, at gentle simmer for 1 ½ to 2 hours, stirring occasionally. When done, the chili should be thick, but still somewhat soupy. If it starts to get too thick, add some extra stock, tomato juice or water.

6.) Serve chili in soup bowls, garnished with a dollop of sour cream, a sprinkle of cheese and jalapeno pepper, if desired. Makes 8 or more servings.

Happy Generosity Day

While taking a break from scavenging for the dark chocolate caramels in the truffle box today, I came across a news item from Time Magazine about rebooting Valentine's Day as Generosity Day. I've always loved the idea of random acts of kindness and paying it forward, and this idea for celebrating today's holiday in a seemingly unexpected way reminds me of caregivers and their loved ones who are already so familiar with giving generously each and every day. Creator Sasha Dichter says "...one day of sharing love with everyone, of being generous to everyone, to see how it feels and to practice saying "Yes." Let's make the day about love, action and human connection..."

So however else you may be observing the modern day Feast of St. Valentine, take a moment to think of a simple way to mark Generosity Day as well.

And to you... the caregiver who strengthens human connection every day; the patient, whose love and perseverance inspires all who know you; the doctor or health professional who incorporates the emotional needs and family ties of patients into every consultation you give...

Happy Valentine's Day from patientlovingcare.com.

Everybody Loves a Freebie

Everybody loves a freebie. And there are times in life when you really deserve a freebie. So today we're sharing a list of giveaways for patients undergoing treatment, and we’ll add more as we come across them.

Look Good Feel Better
Look Good Feel Better is perhaps the most familiar service donation program for patients - you’ll see it promoted periodically in fashion magazines. Since 1989, this program offers makeovers to women undergoing treatment for any type of cancer. The organization connects patients with volunteer aestheticians who teach them beauty techniques to help manage the appearance-related side effects of cancer. What we didn’t know is the group also offers an informational website for men undergoing treatment and runs a website plus hospital-based group programs in 18 cities for teens of both genders who must deal with the appearance, health and social side effects of cancer treatment.

Cleaning for a Reason
This foundation coordinates with professional residential maid services to offer general cleaning to cancer patients once a month for four months as a way of giving back to their community. Because they are a small operation, the Texas-based Cleaning for a Reason accepts a maximum of 50 applications each day, beginning at noon Central Time, Monday through Friday. Although the organization is represented in all 50 states and Canada, cleaning services are available in limited geographic areas. The group recommends clicking on their interactive map before applying to be sure there is a participating cleaning service in your area.

Stowe Hope
In the highly competitive travel and tourism business, this idea is genius: plan a wellness conference after ski season in Stowe, Vermont, and offer free hotel rooms to cancer patients. This year’s Stowe Hope event is April 29 to May 1, with registration opening March 1. Billed as retreat and outreach experience, it promises education, enlightenment and fun. The weekend is filled with doctor-led seminars, hands-on workshops and other opportunities addressing physical, emotional, spiritual and financial aspects of this broad disease. The area’s lodging association members donate hundreds of rooms each year to new attendees and their loved ones, according to the organization’s website.

Corporate Angel Network
Far fewer people may need a free plane ride to access medical treatment than say, need their kitchen floor mopped (see Cleaning for a Reason, above). But for those who do, this program could be the difference between medical progress and the status quo. The Corporate Angel Network offers empty seats on corporate jets to cancer patients and companions. Patients must be ambulatory and not in need of medical support while traveling. Eligibility is not based on financial need, and patients may travel as often as necessary. Patients must e-mail or call toll-free within three weeks of their appointment at a recognized cancer treatment center, and have back-up plans with a travel agent or airline, as Corporate Angel Network cannot guarantee a flight will be available to match your traveling requirements.

Free Communication Tools… Priceless
And of course there’s this: the Patient Loving Care Doctor’s Memo. We think you can’t put a value on having an effective conversation with your doctor, so patientlovingcare.com offers a free downloadable guide that can be typed in, saved on your computer, printed out and used again and again. The PLC Doctor’s Memo download package will walk you through how to collect your thoughts, jot them down in a clear format and present them to the doctor in a way that will lead to meaningful conversation so you can both understand your condition and find solutions to problems you're encountering.

Do you deserve a freebie? You bet.

Find Your Lifeline, Sailor - It's Out There

It’s been months – probably way over a year – since I’ve logged into the online parent support group that was my lifeline through the worst of my child’s health crisis. During those times, it was a godsend (and an inspiration for beginning this blog).

After really bad days, when my child was finally sleeping peacefully, I would scroll through posts. Drained emotionally, it was somehow comforting to read about other people working through their own daily struggles.

I felt very alone during those years, when friends and neighbors couldn’t fully understand why we could never commit to socializing until we saw how our child felt that day – and even then would likely cancel at the last minute when things took a turn for the worse. At least online, someone else was also home at the computer, having rushed out in the middle of the school play, or abruptly left the ballgame, because of a sick child.

I also felt vindicated to see other parents searching for demanding improved quality of life for their child, over and above simply counteracting the physical symptoms of the illness. That issue alone made the parent message board indispensible. It filled a knowledge gap that our healthcare team didn’t seem to be able to address.

Having help is critical during a health crisis or chronic illness. But even the support of family and friends to cook meals, take a turn sitting with the patient, to lend a shoulder to cry on, doesn’t bring the same comfort as sharing thoughts with someone living the same bad dream. Sharing the experience– even with a stranger online – makes getting through each day (or even each hour) that much easier to accomplish.

Whatever condition is disrupting your life, do a search for online support. It’s there 24/7 and will open your world to all kinds of possibilities for managing, coping, and healing. Most likely the best place to start is the national non-profit dedicated to your circumstances (and every medical condition has one). Click here for a list – and feel free to drop a line to add any we may have missed.