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Showing posts from 2013

20 Things To Try in 2014

2014 is upon us. Out with the old, in with the new. We've entered the time of year where people reflect on the past year and look ahead to new beginnings.  Resolutions are made, some of which are kept while others fall by the wayside because, as we all know, old habits die hard.  I'll be turning 38 tomorrow (wait, what?) and I can say a lot has changed in my life since I was 26 and diagnosed with my chronic illness.  I'd like to say I've grown wiser in the past 11+ years, and not because I went to graduate school, but because of the life lessons that living with Crohn's has taught me.  With that, here are 20 things all of us living with chronic illnesses should strive for in the new year:

1.  If you haven't accepted your diagnosis, work towards that.  It's one of the most freeing things a person with a chronic illness can do.

2.  Connect with people who get it, whether it's online, at meetups, or in a support group. They don't necessarily have to ha…

The Physical Weight of IBD

Weight no more...I finally am writing a blog entry on the physical weight of IBD. I had mentioned it in an earlier post and was reminded of this topic by a brilliant entry by Christina at The Crohn's Diaries and a video by our friends at the Great Bowel Movement called the Weight of IBD.

In a culture obsessed with appearances, what's a patient to do? When diagnosed with a chronic illness, patients young and old want to know, "Am I going to look different?" The answer with IBD is usually yes, at least at times. The classic example is when a patient is on Prednisone. You want to see weight gain?! You want to see water retention?! In regards to appearance, these powerful steroids can fluctuate weight significantly, as well as create the moon face phenomenon. I liked to call it "chipmunk cheeks" and this was something I personally endured for about a year in college. Literally every day I would get asked, "Did you just get your wisdom teeth out?" By t…

Chronic Illness Catch-22

One of my favorite books I read in college was Joseph Heller's Catch 22, a satire about World War II pilots who find themselves in a really challenging situation, whose title has made it into the English vernacular.  To find oneself in a "Catch 22" is to be in a no-win situation, a double bind, you're-damned-if-you-do-you're-damned-if-you-don't if you will.

I was meeting with a client recently and the topic of normal test results came up.  What do normal test results mean to people living with a chronic illness?  They should be good news, right?  We talked about how she didn't feel just happy or relieved, but was also kind of angry about it.  To the person not in these shoes, being angry about normal test results seems really counter-intuitive.

There was this split in her emotional reaction:  I'm happy but I'm irritated.  Part of her wanted the results to be off, just a little.

Even though that would be bad news in terms of her disease, and she…

HIV, Stigma & Mental Health

With the passing of Nelson Mandela, the world's attention has turned to South Africa and the important work he did to fight apartheid and inequality.  Mr. Mandela also worked tirelessly to reverse the catastrophic effects of rampant HIV infection among South Africans.  Up to 20% of women of reproductive age are HIV positive there, and overall estimates put 11% of the population infected.  Those rates are staggering compared to the rest of the world - here in the U.S. HIV prevalence is estimated at 0.4% and European rates are around 0.3%.

Thankfully, anti-viral medications like HAART have changed HIV from a death sentence to a chronic condition that, with proper treatment, many people are able to live with for decades. Because I'm old, I remember when AIDS first appeared in the early 1980s in the mainstream consciousness, including watching the story of Ryan White unfold up until he died at the young age of 18.  People were afraid and HIV stigma was rampant.

Simply getting dia…

6 Antidotes for Holiday Stress

Thanksgiving week is here.  The holidays can be considered a stressful time of year for many of us - uncle Pete just loves to talk politics while passing the mashed potatoes or how am I going to find room for my cousin who tends to overstay his welcome?

For those living with chronic medical illnesses, the holidays may mean trying to find the energy to go to Thanksgiving dinner, having to explain to Aunt Bethany why they can't eat the stuffing for the 12th time, or struggle to maintain conversation while experiencing nagging pain. It's enough to send the stress meter off the charts, and we may begin to lose it a little.

Every year we know the holidays are coming, but every year we get stressed out.  That doesn't really make a whole lot of sense, does it?  Holiday stress may be inevitable, but the degree to which it hits us is really up to us.  Here are 6 things you can do to help dial down that holiday stress meter this year:
 1. Let Go of Perfectionism
A lot of our stress…

'Tis the Season: Thanks. Giving.

November is flying by! Tiffany and I have been busy with multiple community events and speaking engagements, and are looking forward to seeing some of you this Tuesday night at Skokie Hospital for all our IBD patients who live on the north shore of Chicago. As the days seem to fly by, Thanksgiving is only 11 days away, and then come the winter holidays. As we take time to reflect on how much we have to be thankful for, I have to so much joy for how much my own health has improved over this year. Less than a year ago, I was inpatient all month with surgery complications, and I am thrilled to be out and about, working, making a difference, and able to be independent.

Tonight I watched a 60 Minutes show where part of it was on The Giving Pledge. I had never heard of it before, and wanted to pass it along. It is a commitment by the world's wealthiest individuals to dedicate the majority of their wealth to philanthropy. The qualification to be in this elite club is to be at least a bil…

Does Therapy Really Work?

Being a psychologist in the medical world, I'm often met with some skepticism about what I do.  This can come from patients, their families, physicians - you name it.  There is good reason for questioning if psychotherapy is helpful for people living with a chronic medical illness.  Hell, there's good reason to question if psychotherapy is helpful for anyone.  Not because it isn't, but because questioning things is good practice.

The great news is psychotherapy is helpful for a slew of problems, and specific types of therapy are more effective than others.  I personally trained in Cognitive Behavioral Therapy and this is what I use most of the time.  I was also trained in other major approaches - existential/humanistic, psychodynamic, and family systems - which I may borrow from from time to time if it will benefit the person I'm working with.

A popular buzzword in medicine is evidence based treatment.  That is what it sounds like:  is there evidence based in sound, pe…

Sunday Reading List: 11/3

Hello, internet people.  Happy Sunday.  I'm sorry about my lack of blogging the past few weeks.  It's been a little crazy, but in a good way, around here.  It's time for another review of some of the latest enlightening healthcare-related news.

The New York Times has a great article about the soaring costs of asthma and allergy medications.  There are a few statistics in this one that might just tick you right off:  The Soaring Cost of a Simple Breath.

A new study finds that healthy people don't need to take vitamin D supplements to help with aging bones.  However, for those who live with autoimmune disorders, vitamin D levels are implicated in their development and symptoms.  So it remains an important discussion point for you and your doctor:  No Sign that Vitamin D Supplements Help Aging Bones.

Ah, Dr. Google.  If you tend to be a worrier, then looking online for medical information may not be the best strategy.  As I've said ad nauseum, the web is a great reso…

Illness and Spirituality

Spirituality is a topic that I have a strong interest in, but one I want to tread lightly on, as this is a highly sensitive topic. Religion can be polarizing, similar to politics, so in honor of the government drama going on, I will dip my toe ever-so-slightly into this topic, and may dive deeper in the future. To start off, here is an image from one of my favorite holiday gifts a while back, entitled "Nuns Having Fun." There's something to be said about not taking yourself too seriously, no matter what religious beliefs you have. 

What brought my attention to this was reading the most recent Caring for Crohn's blog entry entitled, "Losing My Religion." It brought up this wonderful intersection of religion and chronic illness. Any illness brings with it challenges, often lifelong, that have a major impact on a person's quality of life. With physical illness, the unpredictability and stigma of the disease can produce mistrust for the patient, not only of …

Affordable Care Act

Greetings.  I'm here to talk about the government shutdown.  Ha, just kidding.

We're 5 days into the implementation of the Affordable Care Act (aka "Obamacare") and, political ideologies aside - really really far aside - I wanted to go over some of the important parts of this law for people living with a chronic illness.  You know, in case you're like me and didn't have time to read all 2,000 pages; I've reviewed several reputable sources for this information which hopefully will summarize some of the key points.  I'll leave the arguing of the merits or abominations of this law to the pundits, politicians, and anyone else who likes to debate social issues.

Pre-existing condition clauses are a thing of the past.  Under the ACA, insurance companies can no longer exclude a person from coverage due to a chronic condition.  In addition to this, they're supposed to offer affordable plans and not increase premiums if you have a chronic illness that may re…

Girls with Guts Retreat

This weekend I was honored to be able to speak at the first ever Girls with Guts retreat in Michigan. I found out about this organization through a good friend Jackie Zimmerman, who was a counselor at Camp Oasis, and who is the president and founder of the organization.

At the retreat, it was an opportunity for about 40 women across the country to come together as an IBD (Inflammatory Bowel Disease) family. Whether you had Crohn's, ulcerative colitis, or an ostomy, there was a common understanding that we all have been through a crazy rollercoaster of a journey, and we can learn from each other. There is something freeing and normalizing about being in a room full of women with a similar illness. I don't think I've ever talked so much about my illness and health for such a concentrated amount of time. I learn a lot and am thrilled to be connected with even more women who have been through similar experiences. There was a phenomenal anthropologist who was at the retreat, ru…

To Everything There is a Season

Fall has arrived here in Chicagoland.  Time for pumpkins on porches and pumpkin spiced lattes, brisk morning walks with the dogs, and evenings around the fire pit.  I really love this time of year - the only downside being that on its heels is a Chicago winter.

In my own experience and talking with people with chronic conditions, many notice a seasonal component to flare ups and remission.  Spring was a time early on in my Crohn's tenure that was a bit more tumultuous.  I'd also have a lot more seasonal allergies, and I wondered if these were somehow related.  Interestingly, now that my illness is in remission I no longer have those allergies.  I don't know why, but I'm just gonna roll with it.

So what does the science say about the seasons and chronic conditions?

Vitamin D levels are related to Ulcerative Colitis activity.  Not exactly a study on seasons, but obviously we get a lot less sun exposure in the winter months.  A 2013 study reports that 68% of people in the …

Leaving a legacy

What would you do differently if you were diagnosed with a terminal illness? Would you change anything about your life? Are there relationships you would invest more in? Or risks you would take? These are questions that many of my cancer patients struggle to answer, as they oftentimes are unable to make it through grueling treatments and the course of their disease. Over the past four years, I have seen many of my beloved patients come and go, some leaving the world behind, some re-entering it as "survivors." The most powerful encounters for me have been when people are approaching death, but have the boldness to talk about it. It gives me chills to get to have intense, meaningful conversations with people that are reflecting on the true meaning of life and what kind of legacy they want to leave. 

I came across an article in Huffington Post this week that some of you may have read as it went viral on the Internet. It was an obituary, but not just any obituary. It was one that…

Workplace What The...?

Greetings.  It's Invisible Chronic Illness Awareness Week!  I was thinking about a topic to write about when I came across an article about a woman who worked as an editor for Patch (owned by AOL) and some completely incredulous actions taken by her boss in response to her chronic illness and, later, her pregnancy.

Have a seat, this stuff is insane.

"...every time plaintiff showed signs of suffering from her illness, her supervisor would get visibly upset or sigh dramatically and suggest that her job was at risk if she could not overcome her chronic/incurable illness more quickly"

The woman in the story has Crohn's disease, but really she could be living with any chronic condition.  Workplace issues are common for those with chronic illness.  Who to tell, how much to disclose, under what circumstances are just a few questions that make up what can feel like a minefield to navigate.  I wish I could tell people that supervisors, co-workers, or even human resources will…

Book Report

In honor of all the kids going back to school this week, I wanted to do my own book review as I found this book at the library a while back and wanted to share it with you all.

Your Child with Inflammatory Bowel Disease: A Family Guide for Caregiving
I recently read this book which is published by the North American Society for Pediatric Gastroenterology, Hepatology, and Nutrition. It was very informative and I'd like to recommend it to patients and parents.

It is written and edited by medical professionals who want to be more educated on their child's condition. It begins by defining the various conditions that make up IBD (Crohn's, ulcerative colitis, and indeterminate colitis) and talking about the possible epidemiology of IBD.  The second part of the book touches on diagnosing IBD and goes into the symptoms a child may exhibit. There is a very helpful chapter (5), entitled How to Prepare for a Visit to your Child's IBD Doctor. It gives a comprehensive list of topics…

Stress Science

Ah, stress.  We Americans are a stressed society, aren't we?  I personally avoid watching any sort of TV news and stick with online sources as to limit my exposure to the insanity of the world to controlled doses.  Needless to say it's not surprising that researchers have spent, and continue to spend, a considerable amount of time and money understanding the good, the bad, and the ugly of stress.  Here are some recent findings that I thought would be of interest to our readers - because living with a chronic illness not only adds a layer of stress to life but simultaneously increases our susceptibility to sickness (e.g. flare ups of said illness) during periods of stress.

First up, researchers at Princeton University found that mice who exercised regularly showed improved neurological response to stressors.  Specifically, proteins that get released in a part of our brain called the ventral hippocampus and are implicated in increasing anxiety showed up less in the mice who exer…

Food Allergy in the Spotlight

Food allergies.  They seem to be everywhere, lately.  We hear most about peanut allergies, but we humans can be allergic to pretty much any food.   Some foods are more likely to cause allergies, which are often referred to as the "Top 8":  Dairy, Eggs, Soy, Wheat/Gluten, Peanuts, Tree Nuts, Fish, and Shellfish.  Food allergies are on the rise in the US, but the answer to the logical question "Why?" remains elusive.  One raging debate is about how we produce food in this country, en masse, to feed the masses quickly and cheaply.  Another, related debate, is the use of genetically modified crops (GMOs) that go along with the more potent pesticides, herbicides, and fungicides we use to minimize crop losses.  I'm not going to get into all of that today.  Rather, talk a bit about the social and psychological impact of food allergies.

But first, announcements!
The Discovery Channel will air a documentary, “An Emerging Epidemic: Food Allergies in America,” on Saturd…