If you're living with a chronic illness, you're in the right place.

Thursday, November 29, 2012

NHBPM #29: Shout out

7:55 PM Posted by Stephanie Horgan ,

Today is shout-out day, as one of our favorite partner organizations, The Great Bowel Movement, just revamped their website. I wrote a review of them a while back and now they are one of the 2012 Top-Rated non-profits list! Check it out: http://greatnonprofits.org/awards/browse

Their new website http://thegreatbowelmovement.org/ is a great resource for patients who have Inflammatory Bowel Diseases like Crohn's or colitis, and they've got all sorts of helpful links listed as well as as support group directory. Things like GI doctors, mental health resources, nutrition info, blogging resources...and the list goes on! This organization has come up with creative ways to eliminate stigma, with the "Flush Secret" postcard program, and Flush Mob street team awareness mobs. All in the name of normalizing an not-so-glamorous illness and empowering others to tell their story. It all begins with a conversation. By buying a shirt or mug or button with your illness on it, it can be a powerful tool to start conversations with friends, coworkers, strangers...The coolest part is that the organization donates 10% of all purchases to various chronic illness organizations. 

This organization focuses on IBD, which is just one of the chronic illnesses that we treat at OPBMed, but we would love to hear about other organizations out there for other chronic illnesses that do this kind of great work. Please pass them onto us!! 

Wednesday, November 28, 2012

NHBPM #28: These Times Are A-Changin'

11:11 AM Posted by Tiffany Taft , , ,
I came across this story today about a department store using an obese mannequin and the subsequent discussion that took place online about this move.  Other than the mannequin having a freakishly small head, I had mixed reactions to this news.

One person cited said that she was happy to see this because the way clothing fits a smaller mannequin didn't accurately reflect how it would fit a plus-sized person.  I can understand that as being a positive.

Others decried our society's movement toward greater acceptance of obesity as a new norm, as being overweight is associated with poor health and skyrocketing healthcare costs.  I can understand this point of view as well.

Another stated that stigma toward obesity isn't the same as stigma toward race, gender, or sexual orientation.  Presumably because of the commonly-held  belief that being overweight is controllable and a result of poor choices.

Having worked with many obese people, I know it's a much more complex issue than simply blaming the person.  However, I do agree that there is a significant degree of personal responsibility in the development and maintenance of obesity.  My belief doesn't serve to blame a person for being overweight.  Rather I strongly believe that by accepting personal responsibility we empower ourselves to change.  We can blame the fast-food industry, our parents, the government, and the recurring cycle of fad-diets.  But at the end of the day, where does that leave the person struggling with their weight?

Resistance is Futile
We must acknowledge the role that mental health plays in the obesity epidemic.  Over-eating and under-exercising are behaviors, and our behaviors are influenced by our thoughts and our feelings.  Emotional eating is a huge part of this epidemic, and has been paralleled to addictions research on drugs and alcohol.  Unfortunately you cannot apply the AA abstinence model to food.

There's also a large educational component needed.  When I worked with veterans enrolled in the VA's weight management program I was astounded by how many lacked basic understanding of reading food labels and portion sizes, and how many under-estimate their caloric intake and over-estimate their caloric burn from exercise.

Actual conversation:

Me (Describing the calories in a high-fat meal on a veteran's food diary):  It looks like you took in about 1,200 calories at lunch on Monday.

Veteran:  Really?  That much?  But I exercised to burn some of it off.  I went for nice walk around the neighborhood.

Me:  That's great!  How far did you walk?

Veteran:  I went around the block twice.

Me:  Good.  How many calories do you think you burned with that?

Veteran:  Had to be at least 500 calories.  I was really huffin and puffin.

Me:  Well, we know that if you walk a mile someone your weight burns around 100 calories.  


For some, education was enough.  I'll never forget the veteran who drank a gallon of whole milk a day before he joined the program.  Think about that.  First off, he must have had a digestive system made of steel.  Second, a gallon of whole milk is about 2300 calories.  Times 7 is 16,000 calories.  He cut this from his diet and proceeded to lose 15 lbs in the 8 weeks I worked with him.

But for many, other factors hindered their ability to make lasting behavior changes including depression and socioeconomic factors.  I wish it were as simple as the milk guy, but it isn't.

So, should we embrace obese mannequins?  Or is this evidence of complacency and acceptance of a complex and expensive condition?

Tuesday, November 27, 2012

NHBPM #27: Betcha Didn't Know...

8:24 AM Posted by Tiffany Taft ,
When you go off to therapist school, one of the things you're taught is how to keep boundaries with your clients.  If you think about it, therapy can be one of the most intimate relationships between 2 people.  Yet it's also a professional relationship that will inevitably come to an end (and that's a good thing!).  Ask any therapist how much they tell clients about themselves or their personal lives and you'll get a myriad of responses.  Some are very open, which in my opinion isn't a very wise choice, and some are very very closed, which I also don't necessarily agree with.  I lie somewhere in the middle, and it varies by each person I work with.  A therapist sharing information about themselves with a client requires a lot of thought because the ultimate question is "If I tell my client this about myself, will it help them?"  More importantly, though, "If I tell my client this, will it do them any harm?"

With that, I thought I'd share a few things about myself that are pretty benign by any standards for NHBPM #27's topic - Bet You Didn't Know....

I mentioned in my previous post that I spend part of my time working as an IT consultant.  Before I went to graduate school in 2004, I worked as a computer programmer (.NET) for a rather large commercial real estate firm. I spent quite a bit of time in the corporate world before switching careers, including a few years at American Express.  Other post-college jobs included working in a bakery, a cigar shop, and for an infertility group medical practice.

I own this shirt.
When I worked for said cigar shop - it was the 90's when cigars were a big thing - I was in a somewhat controversial ad in Chicago Magazine that included the local alderman and his wife in a Vegas-style scene where I was the card dealer.  Apparently a politician in a gambling pose smoking a stogie is frowned upon and drew editorial ire in a couple of the Chicago newspapers.  Unfortunately I lost the magazine in my last move, otherwise I'd scan it to share.

Pretty sure that job took 4 years off my life.
I also mentioned in my previous post that I have OCD tendencies for symmetry.  Which, in case you were curious, is one of the more common presentations of OCD.  Thankfully these "compulsions" don't get out of hand or cause any impairment in my life.  But, I do like to line up food in the shopping cart rather than just tossing it in there.  My husband takes great joy in shaking the cart to knock over my neatly lined up cans of beets.

I'll finish with music and 2 songs that didn't make my health & wellness musical playlist post.  My 2 favorite songs ever, which are quite dichotomous if you're familiar with them, are "Under Pressure" by Queen & David Bowie and "The Decline" by NOFX.  The musical styles are quite different in one is "classic" rock and one is punk, but the lyrics from both resonate very deeply with me, especially these:

'Cause love's such an old fashioned word
and love dares you to care for
the people living on the edge of the night
and love dares you to change our way of
caring about ourselves...

Fellow members of
"Club We've Got Ours"
I'd like to introduce you to our host
He's got his, I've got mine
Meet the decline

Monday, November 26, 2012

NHBPM #26: Steph's "more than 24 hours in a day" entry

8:47 PM Posted by Stephanie Horgan ,
I know that Tiffany just posted about what she would do if there were more than 24 hours in a day, and I loved it so much, I had to chime in. (Warning- I copied a few of hers) The good news is that when I ponder this question, I realize how many interests and passions I have that are life-giving. The bad news is that they can get put on the back burner easily if I am not intentional about them.

1) Travel more- I love traveling and have been to Africa twice, backpacked all across Europe, and am determined to hit all the continents eventually. I'd love to go to Australia/New Zealand next.

2) Write a book. I'd love to write an auto-biography, as I have a plethora of stories from this adventurous life of mine. From getting bit by one of my special education students in CPS, to picking up hitchhikers on the way to the grand canyon, to working as the drive-thru girl for a summer...I've got stories to tell.

3) Take a ceramics class. I did this in high school and would love to learn the wheel. Oh, and while I'm at it, I'd do a photography class as well as I loved the darkroom back in the day.

4) Get my PhD. This would require a huge amount of money as well, but I would love to get my PhD in health psych. For now, I would settle for more time to go to professional development.

5) Brush up on American Sign Language so that I am fluent again. I took it two years in college and would love to be a bilingual therapist.

6) Use my blender daily- I was fortunate enough to receive a Vitamix blender last year for the holidays and love it! It came with a whole book of recipes and if I had more time, I'd make one each day. Soups, smoothies, dips, ice cream...

7) Get a dog. If I had all the time in the world, I would have a dog, go on daily walks, and still have time for all the things in my life. Right now, I'm settling for a cat as I run around between my different offices.

8) Get certified in art therapy or life coaching.

9) Organize all my photos, from birth until now. A pretty daunting task, but it would feel so great.

10) Go on a Mindfulness weekend retreat and lead them for my patients.

NHBPM #24: More Than 24 Hours in a Day?

10:09 AM Posted by Tiffany Taft ,
First off....Jeez, our posts are all out of numerical order.  Steph and I are back from traveling this long weekend, so we're back on track to finish out the NHBPM challenge.  I do have to admit that this is bugging my OCD-tendencies for symmetry.  I'll just go line up some Skittles by color before eating them to feel better...

So, what would I do if I had more than 24 hours in a day?  I didn't think this post would be as challenging as it's turning out to be since most days I feel like life is on perpetual fast forward, especially since having my daughter.  I also wear many professional hats so I need to divide my time and attention across running our practice, seeing my clients, teaching graduate students, and being an IT consultant (yes, you read that last one correctly).  Nevertheless, I feel a Top 10 list coming on for this post.

10.  Read more books, especially in the history and biography genres.   I have a copy of Walter Isaacson's Einsten biography that I've made it to page 12 of in the past month.  I do read a lot every night, but 8 Silly Monkeys and The Monster at the End of This Book don't exactly count.

9.  Do more public speaking, especially at patient education conferences.

8.  Participate more in patient advocacy events, from local fundraisers to meeting with lawmakers in Springfield and Washington DC.

7.  Email or call my friends more regularly than I do.

6.  Become fluent in Spanish.  I can get by, but I'd love to be a bi-lingual therapist.  

5.  Learn to knit.

4.  Train for a half-ironman.  I've done RAGBRAI (Register's Annual Great Bicycle Ride Across Iowa) 8 times and have run 2 half-marathons, but have never pieced running and biking together, let alone with some swimming.  I think it'd be the ultimate challenge.  I never claimed to be sane.

3.  Start playing the clarinet again.  I haven't played much since high school, or in almost 20 years.  I'd also like to learn to play the Cello.

2.  Cook more from scratch.  In college I worked in a bakery for a while and learned to love to make fresh breads.  I have many cookbooks that are very under-utilized.

1.  Volunteer with Doctors Without Borders.

Sunday, November 25, 2012

NHBPM #25: Goals

6:42 PM Posted by Stephanie Horgan ,

*This is our final week of NHBPM blogging which has been a real challenge to us! Despite vacations and business trips and holidays, we have stuck with it and hope you will continue to read. That being said, things are busy, and our posts may be shorter! 

How have your goals as a patient evolved?

My goals as a patient have changed over the years. For a long time, my treatment goal was to just find a set of doctors who were all female. Since I was suffering from a chronic illness that was personal, I didn't care who treated me as long as they were female. This could not be further than my view now. My goal and priority is to have a treatment team who specializes in my illness, has both the intellectual strength and people skills, regardless of gender. This was a big shift for me, and happened gradually over time. 

I also vividly remember being petrified of surgery. I would do everything remotely possible to avoid it. I wouldn't say that now I am excited to pursue surgery, but I look at quality of life differently and am less scared to try surgery if it will restore my quality of life. I have a great surgeon who I trust, and am open to working with her in the future if needs arise.

One last goal I have as a patient is to give back. I have always loved connecting with others who have chronic illness and various friends and acquaintances have connected me with people they know who are recently diagnosed. After talking with so many people like this, it lead me to a career of being a therapist who gets to do this for my job! It feels very empowering and humbling to get to walk alongside people who are new to chronic illness and welcome them into a huge community of supportive people I have met. 

Saturday, November 24, 2012

NHBPM #22: Giving Thanks

4:38 AM Posted by Tiffany Taft ,
This would be the Thanksgiving post for NHBPM, aptly prompting me to come up with a list of things to give thanks for. I'm a bit late with this because I'm away from a computer and it only dawned on me this morning around 5:45 that there was probably a Blogger app for my iPad that could circumvent the issues I was having trying to use the actual website. I'm not a Luddite, I swear. I hope you all had a wonderful Thanksgiving.

On to the thanks!

Speaking of technology, I'm thankful for "the tubes," "the interwebz," "the information super-highway" - whatever you want to call what brings many of us together via social media. I remember the first time I saw the Internet. I was in college (yep), it was Netscape Navigator, the background was grey and there were no images. It's really amazing the tools we have today, and for these I'm thankful.

I'm thankful for my partner-in-crime, Steph. It's a blessing to work with a person who doesn't drive you nuts, who is genuine and down-to-earth, and shares your vision of what we should be doing as mental health providers.

Im thankful for the great mentors I had during my training, especially Dr. Laurie Keefer who I was with from the beginning of the Center for Psychosocial Research in GI at Northwestern University. I was very fortunate in my graduate training to have stellar supervisors, from working in a private practice to a major Veterans' hospital. I'd like to also give thanks to my training director at the VA, Dr. Eric Vandenburg, who passed away last December from pancreatic cancer. He is sorely missed.

I'm thankful for really good, craft beer.

I'm thankful for my daughter, who's a total joy AND allows me to witness Piaget's developmental stages in action.

I'm thankful for my 2 dogs, Murphy and Lance - 200 lbs of unconditional love.

I'm thankful for my husband, also 200 lbs of unconditional love.

Finally, I'm thankful for life. Being a secular humanist, I focus on the here and now of our human experience and enjoying the ride. I'll borrow from grandma in the movie Parenthood to finish:

"When I was nineteen, Grandpa took me on a roller coaster...Up, down, up, down. Oh, what a ride!... I always wanted to go again. You know, it was just so interesting to me that a ride could make me so frightened, so scared, so sick, so excited, and so thrilled all together! Some didn't like it. They went on the merry-go-round. That just goes around. Nothing. I like the roller coaster. You get more out of it."

Friday, November 23, 2012

NHBPM #23: It could be worse

9:23 PM Posted by Stephanie Horgan , , ,
Ahh, perspective. Today I was reminded of the big picture as I was stuck dwelling in the little picture. You would think it was some huge revelation that came to me, as I work with adult cancer patients all day and have many conversations about life and death as part of my work. But instead, it was the simplest thing. I have a friend who is going through a similar illness to mine, and she is suffering so, so, so much worse than me. As I listen to her updates and hear her symptoms, it is a wonderful reminder to listen, validate, and pray for her suffering to end. It is also a wonderful reminder to look at my current frustrations with my illness and put things into perspective. My current dilemma is that I am in a wedding tomorrow and I have a barely functioning immune system. Not only did I have surgery recently so I won't be dancing, but I also had the joy of getting bedbud bites while at a hotel a few weeks back. This leaves my arms red, itchy, and scabby for the past 3 weeks. Luckily it is not my wedding tomorrow, and so people will not be watching my every move, but I have been stressed out about my appearance and capability about this event, which I want so desperately to fully enjoy! And all it took for me to really snap out of it, was a text from a friend, about her chronic illness woes to help me remember that life is bigger than having the perfect arms for a wedding. Its bigger than our bodies and our outward appearances, which fade each day as we grow older May that reality continue to sink into each of us as we live in a culture that says the opposite. I desire to keep the perspective and balanced outlook that I got a glimpse of today, all year round.

Wednesday, November 21, 2012

NHBPM 21: Self-talk and "The Mean Lady"

7:40 PM Posted by Stephanie Horgan ,

"Be kind. Be really kind and gentle with yourself."

This is a quote I keep on my nightstand so that I can be reminded of it when I go to bed and when I wake up. Its pretty simple, yet something I so easily forget. I consider myself a pro at being kind and considerate to others, but when it comes to be compassionate with myself, I've got a lot of room for improvement! So where is the disconnect? 

I've noticed its all in the way I talk to myself internally, in other words, my self-talk. And you know how Tiffany and I are always talking about cognitive distortions and cognitive-behavioral therapy? Welp, we fall into mental traps as well, even though we teach others about avoiding them! One of the biggest sources of negative self-talk, is who I have termed "The Mean Lady."  

The ironic thing is, there wasn't a real "mean lady" in my life that the messages seem to be based on. It just seems that sometimes my internal dialogue happens to sound like a bully, and in order to better identify this, I have personified this into "the mean lady". So where does she come from? Well, it seems to be a combination of any negative feedback from others that I've received, influenced by all the deafening messages from the media, and mixed in with harsh self-criticism from always wanting to improve myself. Whew- what a rough combo! 

The thing about the mean lady, is that she is really, really sneaky, and also very tenacious. When health issues flare up, and chronic illness takes a toll on my body, she rears her ugly head (but quietly).  Here are some of the things I find her frequently sneaking into my internal dialogue:

1) If only you didn't have a chronic illness...
2) Life is unfair and depressing
3) You should be more ______ or less _____, you are not enough right now

Basically, the mean lady is a big bully! Very depressing, right?! The good news is that exposing the mean lady is the first step to freedom. Negative self-talk is a habit that is extremely hard to break for some people. Tiffany and I use mindfulness to help people tackle this issue, which means that we start by learning to tune into the self-talk that plays in our head. Not for the purpose of changing it right away, but just to acknowledge what we are saying to ourselves and see what we would like to change. Some people do this by wearing a rubber band and snapping it every time they catch themselves with negative self-talk. Some people use a piece of jewelry and touch it throughout the day to remind themselves to be more aware of their internal dialogue. Some people literally say out loud "Stop" or another key word when they catch themselves with this issue. 

So what about you? When you take a loot at your self-talk, what are negative thoughts that you find yourself thinking? You may not resonate with the idea of a "mean lady", but are there thoughts that hold you back or keep you stuck? When you feel depressed, take a step back and write down what you were just thinking before you felt your mood change. A lot of this can happen subconsciously, and it can change your life to bring it into the light. We'd love to hear what you discover! 

Tuesday, November 20, 2012

NHBPM #20: Don't get upset, Mr. McMurphy

11:00 AM Posted by Tiffany Taft , , ,
A couple days ago one of the prompts for the NHBPM was "I want to change THIS about healthcare..."  There are many issues with our healthcare system, and I don't claim to be an omnipotent being in understanding their intricacies nor their solutions.  And as we know, opinions are like...you know, and everyone's got one.  But if I could wave a magic wand and change one thing about healthcare, it'd be the state of affairs in mental health services for the poor.

I was born at the end of 1975, and the winner of the Best Picture Academy Award that year was One Flew Over the Cuckoo's Nest.  Jack Nicholson won Best Actor as McMurphy, an ex-con who opts to do time in a mental hospital in the 1950s rather than prison, and Louise Fletcher won Best Actress for her stellar performance as the much-hated Nurse Ratched.

I would love to say how much progress has been made in caring for people with more serious mental illness in the United States since we caught a glimpse into life, if you can call it that, in an asylum through this movie's lens.  President Kennedy had a lofty goal to close these hospitals and transfer care to community mental health centers, which unfortunately didn't work out as planned.  The resulting system of mental health services for the poor is abysmal, and unfortunately it doesn't seem to be getting much better.  There is some hope in mental health parity actually being enforced via the Affordable Care Act, which will put treatment for schizophrenia or bipolar disorder on the same level of coverage as that for bronchitis or cancer.

If you're poor and have a mental illness (which, unfortunately, often go hand-in-hand), your prospects are bleak for recovery.  Community mental health centers have seen repeated budget cuts (at least in my home state of Illinois). Staff is overworked, underpaid, and burned out.  Even services run by private hospitals that do accept Medicaid are hit or miss in terms of their quality.  And, dare I say, there are people in the mental health profession who don't belong here.  Maybe at one point they were dedicated to the cause, and time or circumstances led them to become jaded, but when you turn into this

It's time to retire.

So, if I could change one thing about healthcare it would be this.  I would remove the stigma that plagues mental illness, which is one of the major barriers to seeking care. I would divert needed funding to centers and agencies and somehow ensure that it was managed wisely.  I would fire the nurse Ratcheds and replace them with people who care about those they care for.  And I'd push for combination treatments that use medication and psychotherapy, because these lead to the best long-term outcomes. Actually, that's several things, isn't it?  Guess I should look for that magic wand, now....

"That's right, Mr. Martini - there is an Easter bunny." 

NHBPM #19: Things I'm Thankful For...

9:58 AM Posted by Stephanie Horgan ,
Yeah, yeah...Thanksgiving isn't until Thursday, but its the week of Thanksgiving, and I have a lot to be thankful for.

1) Living in a nation with plentiful toilets. For anyone with digestive issues, it is a blessing to not have to pay for public restrooms. The only nation I am jealous of is Japan!


2) Family- It sounds so trite, but my family has been there through all the ups and downs, the medications, the surgeries, the appointments...I truly don't know what I would do without them. 

3) A great treatment team- its taken me a while to assemble my cast of characters, but I feel confident that I have a brilliant set of professionals who are helping me manage my symptoms and live life to the fullest. 

4) Friends- Similar to family, I have been amazed, time and time again, at the quality and quantity of friends in my life. Sometimes they come out of the woodwork, and sometimes they are the tried and true ones that have seen me through all my years of illness. I feel honored to have such great people in my life. 

Sunday, November 18, 2012

NHBPM #18: Advice for Caregivers

12:39 PM Posted by Tiffany Taft , ,
Steph and I spend a lot of time helping the "identified patient," which is medical-ese for the person living with the chronic illness.  Most of my research has focused on the patient experience, with the exception of 1 study I recently published on mothers of children with eosinophilic GI diseases (EGIDs).  A lot of research has been done on caregivers, with a mix of studies on parents of children with illness and adults caring for their aging parents.  No matter who is being cared for, we know this:  being a caregiver is stressful.

In my study, we found that the #1 predictor of mothers' stress levels was their own mental well-being.  Those who reported more anxiety or depression also reported feeling more stressed about being a caregiver.  Makes sense, doesn't it?  When our mental health isn't doing well, we are less equipped to handle stressful situations.  Anxiety taps a lot of mental energy if we're spending time worrying rather than problem solving.  Depression slows us down and saps our motivation.  And this just adds fuel to the caregiver-stress fire, creating a vicious cycle that's difficult to break.

What led me to study caregivers was a personal experience with my newborn daughter, who had digestive problems from dairy and eggs.  I was nursing and using some formula, so we cut dairy from my diet, because it's the most common culprit of the symptoms she was having, and put her on this rather stinky hypoallergenic formula.  But her symptoms persisted.  I remember how upsetting this was for me, even though she seemed rather oblivious to the problem.  I wanted to FIX the problem so badly, but what I was doing wasn't working like it should.

Knowing what I know about EGIDs, I went on the 8 food elimination diet to try to identify the remaining food culprits and reintroduced foods one at a time, which led me to discover the egg problem.  Her symptoms cleared up and I remained egg and dairy free for the next year.  As I reflected on my rather brief experience as a parent with a child whose body wasn't working properly, I thought about parents of kids with EGIDs and the caregiver study was born.  Steph and I were fortunate enough to present the findings at the recent CURED Foundation patient symposium earlier this month.

So what is my advice for caregivers?  These tips are a combination of take-aways from my personal experience and those backed up by research.  It's certainly not all-inclusive, but what I feel are the more important things to think about.

  • Evaluate your mental-well being and how it may be contributing to your stress levels.  Signs of depression include loss of interest in most things you once enjoyed, problems sleeping, changes in appetite (increase or decrease), feeling tearful, irritability, and problems concentrating.  Symptoms of anxiety include racing thoughts or "not being able to shut off your brain," problems sleeping, feeling agitated or restless, and difficulty concentrating.
  • Think about your thinking.  If you're not feeling well emotionally, evaluate your self-talk.  What did I just tell myself before I felt sad or anxious?  A lot of our thinking becomes automatic so that we're not even aware of it.  Our minds are only quiet for a few seconds at a time, and we often become very aware of our thoughts as we're laying in bed at 2 in the morning because we can't sleep.  Write your thoughts down and try to look at them through an objective lens.  What would you tell a friend who's thinking what you're thinking?  Check some of our previous blog entries under "Monday Metacognition" here and here.
  • Take inventory of how you cope with stress.  And does it help?  Make a list. How much time to you dedicate to yourself?  Caregivers can become immersed in taking care of their child to the point they lose their previous identities.  When is the last time you exercised, or went out with friends or your spouse? 
  • How is your support system and are you using it?  Are there people in your life you can truly count on and are there people who may not be as helpful?  Think quality, not quantity.  
  • If you or your child are feeling overwhelmed, seek help from a professional.
And lastly, cut yourself some slack.  Forgive yourself if you're not able to fix everything.  Focus on the positive that you do and the difference you make in your child's life.  Don't discount that if one thing isn't going right.  There were times with my daughter I sat and cried because I felt like a total failure as a mother because I couldn't "feed her correctly."  My vision was so tunneled sometimes that I ignored that she was a happy and healthy baby, in a home full of love, and thriving.  If you find yourself in that tunnel of doubt and self-deprecation, find any way you can to step outside and see the whole picture.

Saturday, November 17, 2012

NHBPM #17: Tiffany's Playlist

12:28 PM Posted by Tiffany Taft , ,
Yesterday we got a great list of music from Steph that she relates to life with a chronic illness.  I have to say that I love that Sam & Dave are on her list since The Blues Brothers is the best movie of all time.

Today, devoted readers, you get a glimpse into my musical psyche.  I love music and turn to it whenever life may be dealing a fistful of lemons.  Here's a mix of songs that I tie to not only dealing with an illness, but also embracing health and wellness.  And they're pretty damn catchy, to boot. In no particular order:

Strange Condition - Pete Yorn
Dry the Rain - The Beta Band
The Underdog - Spoon
The Boxer (Cover) - Me First & The Gimme Gimmes
Who Needs Sleep? - Barenaked Ladies
Help Yourself - Sad Brad Smith
Under Pressure - Queen / David Bowie
The Dog Days are Over - Florence + the Machine
The Cave - Mumford & Sons

Friday, November 16, 2012

NHBPM #16: Steph's Playlist

7:02 PM Posted by Stephanie Horgan , ,
I am jumping ahead to tomorrow's suggestion for health blog posts and posting my health playlist. This is inspired from a few dear hipster friends who make me amazing mixes each time I am sick. All of the songs fit the theme of illness in some way and are either raw or encouraging if you going through a flare. Enjoy! I've even included the YouTube clips in case you want to try them out. Feel free to add your favorite songs as well in the comments!

Steph's Health and Wellness Playlist

Thursday, November 15, 2012

NHBPM #15: Why Social Media?

7:52 PM Posted by Stephanie Horgan ,
Today's post is on why healthcare professionals should venture into the world of social media. When I started this private practice with Tiffany this year, I had no idea what it would entail. I just assumed that patients would find us by word of mouth, and line up at our door!

Little did I know, but I was about to learn a lot about marketing. No matter how good you are as a therapist, it is vital to know those in your community and also let them know what you are doing as well. Not only will you reach your target audience better, but they will reach you! The best and quickest way to do that is to get online. The Internet can be an intimidating place if you are not familiar with it. I suggest to start small and then work your way up- baby steps.

Tiffany and I started with a website, then chose to get a Facebook page as we already were both familiar with the site and had many friends with chronic illness we know on Facebook. Once we got comfortable with Facebook, we added Twitter, and now have this blog. It keeps us busy, but we are enjoying all the connections we are making and delighted by the number of people who have reached out. We just held our first IBD educational event yesterday and over 75% of the people there found out about us through social media! It was very encouraging for all the time we have put into social media and we know that our society is moving more and more towards connecting electronically.

What's next, you may ask? Googleplus? Instragram? Our own app? No thanks. This is it for a while. The upkeep of social media is time-consuming, and we want to provide a good quality as well as quantity of posts. So for now, keep following us on our social media journey to see where we go. We are so thankful to be building a network and online community devoted to helping those with chronic illness.

Wednesday, November 14, 2012

NHBPM #14: Negative Feedback Loop

7:36 PM Posted by Tiffany Taft , ,
Today's topic is how to handle negative feedback in your community.  When we put ourselves out there, especially on the web, there's a certain, inherent vulnerability to that action.  Online there's an added layer of anonymity where people can react to you in very negative ways and you have no idea who they are.  That's a much bigger issue of communication changes in the age of Facebook, Twitter, blogs and email, but what do we do when we receive negative feedback?  I have a few strategies that I try to use:

Stop and Assess.  You've read a comment and you're feeling angry/offended/upset.  Before doing anything, think about why.  What buttons of yours might be being pushed?  What are your thoughts about the feedback, and are they realistic?  Are there alternative interpretations to your initial reaction?  Often, when something someone says (or writes) makes us have an extreme reaction, it's hitting a nerve that may not even be directly related to the current situation.  We may be misconstruing the feedback or amplifying its negativity because of this.  Try to be aware of what might be going on in your head.

Step Away.  If you receive negative feedback and its upsetting, step away from the screen and process your reaction (above).  Go do something else or talk about it with someone to see what their thoughts are on the matter, and what advice they may have.

Never Reply Angry.  I can think of emails that I've written in anger and am very thankful I never sent.  If you find that you've written an angry reply, save it to your drafts and step away for a while.  Give yourself at least 20 minutes to think about things.  The more time the better, if possible.  Replying angry is how flame wars get going on message board threads or Facebook walls.

Reach Out.  If possible, reach out in private to who is giving the negative feedback to discuss.  Be open to constructive criticism.  This doesn't mean you need to cave and agree with feedback you don't agree with, but try to engage in a dialogue to maybe find some middle ground.

Beware of Drama Seekers.  Some people simply thrive on drama.  Engaging with them does little good and will likely just suck you into the drama vortex.  Ask yourself if its worth getting upset over or if its better to ignore the person.  There's a saying I use "don't pick up the rope."  Meaning there's no tug-o-war if you don't have a person on each end of the line pulling.  If you sense a drama seeker is at work, don't pick up that rope.

Tuesday, November 13, 2012

NHBPM #13: Book Report

6:57 PM Posted by Stephanie Horgan , ,
Book Report: At the Will of the Body: Reflections on Illness
By Arthur W. Frank

This was a book recommended to me by a good friend with a chronic illness, who is inspires me on my own journey making sense of illness. This friend is very talented, and uses her creative spirit to help get through even the toughest times including stays in the hospital. She actually has an Etsy page where she is an expert crochet craftwoman, and makes things as creative as colons to give to those suffering from ulcerative colitis. Needless to say, she is a very interesting person, so when she recommends a book, I read it! She told me to start out with an author, Arthur W. Frank, who is a Canadian professor, psychologist, and someone who has gone through serious illness. In the book, "At the Will of the Body: Reflections on Illness" he writes about his experience going through a heart attack and then cancer. The purpose of his book is not to give advice on how to cope, but rather as a narrative to open up the conversation in our society about illness in general. It is a "taboo" subject and people tend to shy away from it. Rather than do a proper book report, I'm going to list some of my favorite quotes, and I invite you to chime in if you decide to read it! 

When the body breaks down, so does the life. Even when medicine can fix the body, that doesn't always put the life back together again. 

Let your self grieve your losses and find people who will accept that grieving.  Illness can teach you that every part of life is worth experiencing, even the losses. To grieve well is to value what you have lost. When you value even the feeling of loss, you value live itself, and you begin to live again.

Every day society sends us messages that the body can and ought to be controlled.  Physicians justifiably think it is their duty to restore the control that the sick are believed to have lost. One less I have learned from illness is that giving up the idea of control, by either myself or my doctors, made me more content. What I recommend is to recognize the wonder of the body rather than trying to control it. 

Stories we tell ourselves about what is happening to us are dangerous because they are powerful.  We have to choose carefully which stories to live with, which to use to answer the question of what is happening to us. 

Although illness just happens, we can organize its experience to make our lives meaningful. We can have both a faith that allows us to accept whatever just happens and at the same time a will to bring about the change we desire. 

The responsibility of the ill, then, is not to get well, but to express their illness well. Those who express their illness live their lives fully to the end of the illness. For me this is enough- it has to be enough. If we cannot value life for itself, then we see ill persons only in terms of what they could be doing if they were well, and we see children only as what they will do when they become adults. 

When the ordinary becomes frustration, I have to remember those times when the ordinary was forbidden to me. When I was ill, all I wanted was to get back to the ordinary flux of activity. Now that I am back in the ordinary, I have to retain a sense of wonder at being here. 

Monday, November 12, 2012

NHBMP #12: I Call B.S.!

1:46 PM Posted by Tiffany Taft , , ,
Today's NHBPM topic is an extra fun one:  Call B.S. on something.  A few things come to mind, but the over-arching theme is the lack of attention that is paid to mental health in the context of physical illness.  Has it gained some recognition in the past decade? Yes.  But we are so far from where we need to be.  Many factors contribute to this slow progress, and I'm going to call out a few here.  I'm also going to comment on the "Functional/Organic" illness divide that I've seen in medicine, and how these conditions are often perceived by others.

It's B.S. for many physicians to dismiss the psychological and social issues that go hand-in-hand with a chronic medical diagnosis as less important.  Not all do, and there are some who embrace this relationship.  But in my experience it's not yet the norm.  Yes, it's beyond the scope of their training, it's uncomfortable to talk about, and it can push them over the small 15-minute window they have for appointments.  I get that, but there are resources out there that physicians can use (points thumb at myself).  If they partner with a mental health professional who is skilled in working with these clients, it'll reduce their patients' healthcare utilization and improve medical outcomes.  The research supports this over and over again.  Yet so many don't understand the value in this multidisciplinary approach enough to routinely think about it.

It's B.S. for insurance companies not to cover mental health services on the same level as medical services.  I dedicated an entire blog entry to this, so I won't go on here.  I've had so many people reach out to us for discounted or free treatment because they don't have insurance or they do but no mental health coverage.  I usually have to refer them to community mental health centers, with long waits for appointments and over-worked staff.  Steph and I do offer a limited number of discounted slots, but we also run a business.  I would love to be able to see everyone for free.  Once I win the lottery.

It's B.S. for people to dismiss "functional" illnesses such as Irritable Bowel Syndrome, Fibromyalgia, and Chronic Fatigue Syndrome as lesser conditions, or worse - all in the person's head.  I started my research life creating a questionnaire to measure stigma perceptions in patients with IBS, which I extended to IBD for my doctoral dissertation.  Both groups experience stigma, but the IBS group reported more especially from health care providers.  I've reviewed (and rejected) research manuscripts that my peers have submitted because of their derogatory language toward those with IBS.  Just because an illness doesn't show up on traditional diagnostic testing doesn't mean the symptoms aren't equally as real and equally as debilitating.

The previous statement is also true for people who have an "organic" disease but their tests are coming back clean, yet they still have symptoms.

It's B.S. for anyone to be thought of as weak for seeing a therapist.

Dr. Phil is B.S. (Now I'm just getting off on a tangent)

NHBPM #11: Captions!

5:51 AM Posted by Tiffany Taft , , ,
Today's topic is to re-caption an anatomy picture to reflect how you see your body.  So I took a slight spin to this and created one of those "What People Think I Do....What I Really Do..." memes for a clinical psychologist.  Cheers!

Saturday, November 10, 2012

NHBPM #10: LOL post (belated)

2:13 PM Posted by Stephanie Horgan ,
*Sorry about the delay in this post- it was meant to be for 11/10/12, but was stuck in drafts!

When you counsel so many people with health issues that revolve around digestive problems, you get used to talking about poop. Many people in our culture find this subject taboo, embarrassing and some find it downright hilarious. Thanks to our friends at The Gutsy Generation (CCFA Canada)  we had to share some of these silly photos/someecards which made us laugh. Sometimes laughter is the best medicine!

As therapists, we use humor with caution. Each client is different with where they are in their journey and how sensitive they may be to joking about issues that are affecting them. It's a great outlet for some, and we encourage our clients find the humor in their everyday life, and share it with others, as it can decrease the stigma they may be feeling. To end this post, I'll post a few pics for other non-IBD chronic disease patients. 

NHBMP #9: Losing a Client

5:28 AM Posted by Tiffany Taft , ,
Today's topic (Ok, yesterday's but I think it's still yesterday in Hawaii so I'm getting in just under the wire) for NHBPM is to post a detailed description of a memory.  Since Steph and I are writing about our experiences as people who work with those living with chronic illness, our entry is a little different.  When I thought about what memory to write about, 2 of my previous clients came to mind - those who had died either while I was seeing them or shortly after we'd finished.  I'll call them John and Joe.

When you learn how to do therapy, you study different theories and do some role playing in your classes.  You sit in and observe your mentors doing initial interviews and maybe a session or 2, but overall it's like being thrown into the deep end of the pool when you're 6.

John was maybe my 2nd therapy client.  He was in his 60s, in a tenuous marriage, had a daughter who he was estranged from, and a former oil rig worker.  He came to me after he'd had a liver transplant due to Hepatitis C, and the 2nd liver was starting to fail because he'd had very little follow-up care.  John was a no-bullshit kind of guy.  He kind of reminded me of George Carlin, but not quite as funny.  I was a budding CBT therapist and I gave John a homework sheet from a workbook I had of CBT homework sheets (because that's what you do, right?)  He took it and when I spoke to him the following week he told me I could shove my worksheet up my ass.  Rather than being off-put by John, I learned several valuable lessons about my job very early.  I really enjoyed working with him.

After seeing John for about a year and a half, he went into the hospital around this time of the year and he never came out.  I heard from his wife via email that he'd passed away in early December.  It's pretty rare to have a client die as a therapist in general, let alone this early in your training. I had such a flood of emotions.  And I wondered if it was appropriate for John's therapist to show up at his funeral.  The #1 tenet of this job is you always protect confidentiality.  If I showed up, his family and friends would ask who I was.  I could lie, I suppose.  I talked at length with my supervisor about all of this, and I decided not to go.  I did email John's wife and let her know what an impact he'd had on me, but she never replied.

Joe was one of my clients who I worked with at the Veterans Administration (VA) hospital during my internship year (5th year of graduate school).  Joe had paranoid schizophrenia since he was in his early 20s and was in his early 50s when I saw him.  We worked together for a year and he taught me more than any book could about life with schizophrenia.  Joe was well known at the VA since he went there most days for classes in the program they had for people with more serious mental illnesses.  I'll never forget how he described life with his condition:

It's like living in a dark room, all the time, but there's this dim light in the corner that you reach out to...and sometimes you can get to it, but usually it's just out of your grasp.

I learned that Joe passed away about 8 months after I'd finished my year at the VA from a brain aneurysm.  The doctors had missed it when he went to a non-VA emergency room because they assumed his symptoms were due to schizophrenia (something that  happens more often than it should).  This time, I did attend the funeral service as several people from the VA were going.  It still felt strange to be sitting there in the church with Joe's family up ahead of me, but I was glad I was able to pay my respects to my client this time.

“Through others we become ourselves.” ―Lev S. Vygotsky