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

Saturday, June 28, 2014

Chronic Illness Camp Tips

5:56 AM Posted by Tiffany Taft , , , , ,
This week's post is by our awesome summer intern, Jessica Naftaly, who writes about summer camps for kids living with chronic medical illnesses.

Announcements, announcements, announcements! It’s that time of the year, camp season! Whether you are a parent or a camper, getting ready for camp can be exciting but also nerve racking. Next week I am off to Camp Oasis Michigan and I have lots to do before I leave. But….being an experienced camp counselor helps with my long to-do list. Having a chronic illness and traveling anywhere can be a bit difficult. Specifically with camp, you may not have access to all of the foods and medications that you normally do.
The key is to plan, plan, plan.


Here are some tips for chronically ill (but awesome) campers and their parents before heading off to camp.

 • Campers: If this is your first time at camp, congrats! I’m sure you will have an amazing time wherever you are headed. Contact your camp office and see if you can meet a camper who has experienced camp before camp even begins. This way you will get all of your questions answered and will have a friend at camp before it begins. Also find out what activities are available at camp.

 • Parents: Talk to the camp director and medical staff before camp begins. Make sure the staff has all the information they need to make sure your child has an amazing time. This may include medication lists, emergency contact numbers, food restriction lists, etc.

 • Campers/Parents: If you are taking medication at camp, make sure you have enough medication to get through camp and a little beyond. The last thing you want is to be scrambling for a pharmacy in the middle of the woods. Also bring extra medication in the bottles that they came in. It is always a good idea to have extra medication; better than not enough. If your child needs help taking/remembering to take their medication, ask the medical staff if they check to see if the campers take their meds or are able to administer the meds.

 • Campers/Parents: Do you have diet restrictions? Let your camp know! Camp kitchens can be accommodating to many different diets. If there are specific ingredients that you can’t eat, check to see what the kitchen staff puts in the food. For example, I can’t eat garlic or onion and I asked the camp director if the grilled chicken had either of these ingredients. Even if the camp can accommodate you, I suggest bringing some snacks that you are able to eat. You never know when you will be hungry for a snack when the kitchen is closed. Many camps will allow you to store the food somewhere other than the cabins (to avoid bugs/animals)….just ask or suggest this option. If you decide to bring food to camp, plan what you want to bring a few days before you leave for camp. Go grocery shopping and get food specifically for camp. Decide if you want to bring refrigerated items like fruit or a special kind of milk. Find a small cooler in the house, stuff it with ice and place your items in there. Ask the camp if there is refrigerator access.

 • Parents: Is your camper going away to camp for the first time? It’s normal for you both to be a little antsy. If your child is worried about camp, assure the camper that he or she will be fine. Talk about all of the exciting activities that your camper can look forward to. Make sure to answer your child’s questions. Contact the camp for any questions that you can’t answer. Your child may be nervous about being away from home. Think about sending a stuffed animal or blanket that comforts your child. You are probably nervous sending your kid to camp as well. Having the confidence that you child will be safe and have an incredible experience at camp will also ease your child’s anxiety. Be hesitant about visiting your child at camp. This is probably one of the few opportunities that your child will be able to be around kids his/her age that also have the same chronic illness. Let your child enjoy the experience on their own.

 • Campers/Parents: HAVE FUN! Parents you are down a kid for a few days, take some time for yourself. Campers, enjoy the experience!

Chronically Awesome Camps:
CCFA Camp Oasis (kids living with Inflammatory Bowel Disease) http://www.ccfa.org/get-involved/camp-oasis/find-a-camp/

American Diabetes Association Camp Finder http://www.diabetes.org/in-my-community/diabetes-camp/camps/

Camp Kesem (kids with parents affected by Cancer) http://campkesem.org/find-a-camp

Asthma Camps http://www.asthmacamps.org/

Camps for kids affected by cancer http://www.cancer.net/navigating-cancer-care/children/camps-and-retreats-families-and-children-affected-cancer

Sunday, June 22, 2014

Let's Talk About Gluten

7:14 AM Posted by Tiffany Taft , , , ,
You may have noticed that gluten has garnered a lot of attention over the past few years as a potential trigger for physical symptoms, especially in the digestive system.  Anecdotal evidence, whether it's written in a blog or on a message board, or shared between friends over lunch, shows that many people report feeling kind of icky after eating gluten.  But the negative effects of gluten don't stop with our digestive tract.  A simple Google search on what conditions gluten may cause yields hundreds (thousands?) of articles on the topic - some rather alarmist and hyperbolic, stating gluten will...kill...you.  

Gluten has been linked to over 55 conditions including ADHD, autism, multiple autoimmune diseases, depression, migraine headaches, epilepsy, and schizophrenia.  Schizophrenia?!  I'm not going to get into all of that here, because a) not my area of expertise and b) too much controversy, even for Prince. But what does the research show about gluten intolerance and digestive problems?  Like a lot of things, the story is evolving.


Dr. Peter Gibson, a gastroenterologist and researcher in Australia, produced compelling evidence for the idea of "Non Celiac Gluten Sensitivity" (NCGS) in a study published in 2011.  This study reported that a percentage of people without Celiac disease experienced gastrointestinal distress when eating gluten.  I've seen many clients with Irritable Bowel Syndrome (IBS) or other chronic GI conditions that report being more symptomatic if they eat gluten.  Many have cut gluten from their diets.  In fact, up to 30% of Americans report eating less gluten.  People living with Celiac disease probably remember when gluten-free products were relegated to specialty food stores like Whole Foods or a corner of an aisle in a mainstream grocery store.  Now?  Gluten-free products have exploded into a multi-billion dollar industry in only 2 years and gluten has turned into a bit of a black sheep of our foods.

Dr. Gibson decided to replicate his study with more scientific rigor to try to explain why this was happening and control for other factors that might be explaining the symptoms.  He tested his hypothesis in 37 people with confirmed NCGS in a very controlled fashion.  First, participants were placed on a low FODMAP diet for 2 weeks.  FODMAPs are short-chain carbohydrates that are poorly absorbed by the small intestines, and are found in several foods but are most prominent in gluten-rich food.  After the baseline 2 weeks, each participant was given 3 diets, each of which they ate for 1 week:  high gluten, low gluten, and protein only (placebo).  Participants and researchers were blinded (aka, they didn't know) to what diet participants were eating.  Then Dr. Gibson had 22 of the 35 participants redo the experiment again with the protein and high gluten diet, and also the baseline FODMAP (the placebo this time) diet again.

So what did they find?  It didn't matter what diet the participants were on.  Pain, bloating, nausea, and gas symptoms were all reported to be increased to a similar degree over the baseline FODMAP diet.  In the 2nd experiment, participants who reported improved symptoms on the baseline FODMAP diet reported worse symptoms on the placebo FODMAP diet.

Dr. Gibson concluded that something called the "nocebo effect" was going on.  The symptoms appeared because participants expected to feel sick on the gluten diet, but because they didn't know what they were eating, the symptoms were brought on by psychological processes and not the actual food they were eating.

In my experience, telling people with real physical symptoms that their distress is brought on by psychological processes tends to not go over very well.  Our research on stigma perceptions in people with IBS has shown that many fight the notion that their condition is "all in their head" whether it's from friends, family, or physicians.  Part of my introduction to clients referred to me by their gastroenterologist is "you're not here because your doctor thinks you're crazy."

But does that mean we should dismiss the findings by Dr. Gibson because they identified a psychological process driving symptoms in NCGS patients?  Absolutely not.  We can't ignore the relationship our brains have with our body and subsequent physical symptoms.  Dualism, or the idea that the mind and body are separate entities, is an antiquated idea that is being rejected by modern western medicine more and more.  If you think about it, being told that you're not allergic or sensitive to gluten should be good news.  But in the world of poorly understood illnesses like IBS, it's incredibly helpful for many patients to be able to identify something that explains why they're ill.  Food is a completely logical idea and it's something I can control.

The good news is we can also control our psychological processes.  It may seem harder than simply removing gluten from our diet, but it's really not.  We just need the right tools and, most importantly, an acceptance that it's not a bad thing, a weakness, a flaw, or any other negative quality in ourselves when we address psychological contributions to chronic symptoms.  This isn't me sitting on my psychologist high-horse.  I'm thinking of the clients whom I've worked with to understand the role of psychology in their medical conditions and say, usually with a lot of excitement, "I thought it was all these foods but it wasn't.  I can eat normally again.  I don't have to stress out about what I put in my mouth on a daily basis."

Their quality of life improved dramatically because food no longer produced anxiety, or stress in their marriage, or social isolation from fear of eating out in a restaurant.

Research on the role of diet in chronic medical conditions continues to evolve.  We shouldn't assume Dr. Gibson's study is the final word on gluten's role, but it does remind us of the importance of the mind-body connection.

Best,
Dr. T.

Friday, June 13, 2014

In the Spotlight: Scleroderma

6:00 AM Posted by Tiffany Taft , ,
We're half way through our "Rare Disease of the Month" blogathon for 2014.  This month, we highlight scleroderma, also known as systemic sclerosis.  The most common symptom of scleroderma is a hardening of the skin, but it can manifest in many other ways as well.


Sidenote:  I found out in my research that Robin Williams is affected by Scleroderma and gave this insight:

"You can make up a joke about almost anything. But to tell you the truth, there isn't even one tiny aspect of this disease which lends itself to humor. Scleroderma is a horrible disease with nothing to recommend it, other than the incredible courage which its victims muster in the face of overwhelming odds and terrible suffering."

Snapshot:  Scleroderma is a chronic autoimmune disease that can affect the skin (most common), connective tissue, and internal organs.  The digestive system is commonly affected, with 75-90% of patients reporting GI symptoms. Scleroderma is classified as either localized  (morphea or linear scleroderma) or systemic (limited or diffuse), the former being more common in children and the latter showing up more often in adulthood.  Symptoms vary depending on what part of the body affected.  For example, if the muscles are affected symptoms include pain or stiffness in the joints; if the digestive system is impacted a person may have difficulty swallowing, constipation, or diarrhea. There is no cure and the cause of the disease is poorly understood.

How Common is It?
Scleroderma affects around 300,000 people in the United States (roughly 0.001% of the population), so it's quite rare. Women are about 4 times more likely to get scleroderma than men and tends to be diagnosed between the ages of 25 and 55.

What About Diagnosis and Treatment?
Diagnosing scleroderma can be difficult, and what type of physician doing the testing depends on the part of the body affected.  Blood tests to check for certain antibodies, tissue biopsies, pulmonary function tests, or CT scans may be used to diagnose scleroderma.

Treatments that act on the underlying bodily processes that drive scleroderma are unfortunately limited.  Sometimes scleroderma is mild enough that medications or other treatments aren't required.  Otherwise, the goal is to manage the symptoms that the disease creates, again depending on the parts of the body affected.  For example, in a person where scleroderma affects the circulatory system, they would use blood pressure medications that dilate blood vessels to prevent lung and kidney problems.  If the disease impacts the digestive system, acid reducing medications may be used to reduce heartburn.  Some medications that suppress the immune system seem to help as well.

What About the Social and Emotional Impact?
The good news is in 2010, an international consortium of researchers published a consensus agenda for research on social and emotional aspects of scleroderma. Research has shown that scleroderma affects many areas of a person's life, including depression and anxiety, fatigue and sleep issues, chronic pain, chronic itching, body image concerns, sexual function, and work disability.

Rates of depression in scleroderma patients range from 36 to 65%.  Depression is most related to pain levels, fatigue, the quality of the person's social support, feelings of helplessness, and fears of progression of the disease. Scleroderma often leads to disfigurement to the hands, mouth or face which can lead to body image concerns as extensive as those seen in patients with severe burn injuries.

Sexual dysfunction is also reported among people living with scleroderma.  Women are particularly affected, and report problems at similar rates as those living with HIV, gynecological cancer, and breast cancer.  Fatigue can also have major impacts, including predicting work disability.  Levels of fatigue in scleroderma are on par with rheumatoid arthritis, lupus, and some cancers.

Helpful Resources:
The Scleroderma Foundation
Scleroderma Research Foundation
International Scleroderma Network




Saturday, June 7, 2014

3 Words to Remove from Your Self-Talk

7:19 AM Posted by Tiffany Taft , , , , ,
There are a lot of people who have influenced the field of psychology.  Everyone knows Siggy Freud.  Some have probably heard of B.F. Skinner or Ivan Pavlov.  (Cue elderly man voice) When I was in undergrad, we watched a somewhat well-known video in the psychology world made in the 1960s called "Gloria."  The point of the video is to learn about 3 very different therapist approaches toward the same client, named of all things, Gloria.  What we can call 3 giants in the therapy world were the psychologists Carl Rogers, Fritz Perls, and Albert Ellis.  Thanks to the marvels of the internet, you can see the videos here, here, and here.

Gloria & Ellis
I rather enjoy all the smoking that goes on.  But beyond that, this video was my first introduction to Albert Ellis and his theory called Rational Emotive Behavioral Therapy (REBT).  Ellis, trained in traditional Freudian psychoanalysis, jumped teams to shape much of today's modern Cognitive Behavioral Therapy (CBT) approach.  If you actually watch the video, you may notice that Ellis's approach with Gloria isn't as "touchy feely" as the others in that he directly challenges Gloria's dysfunctional thought processes.

What about those 3 words I mentioned?

  1. Must
  2. Should
  3. Ought

According to Ellis, when we tell ourselves something must be a certain way it leads to a lot of negative feelings.  He even coined the term "musterbation" where we tell ourselves "I must do this" or "Things must be this way."

The 3 main must themes that cause us the most emotional pain are about ourselves, other people, and the world:
"I must do well/be loved or I'm no good."
"You must treat me well or you're a  bad person."
"The world must give me exactly what I want, precisely what I want, or it's a horrible, awful place."

After we say something must be so, and we feel anxious or sad that it isn't the case, we then tell ourselves "I shouldn't feel this way or "I ought to be able to make things right."  The combination of the primary must with the secondary should or ought is what perpetuates feelings of depression, anxiety, or even panic.  Or as Ellis put it we get anxious about our anxiety, depressed about our depression, and guilty about our anger.

Image courtesy of and © Natalie Dee
What I like most about REBT and CBT is that it empowers us to change our problematic thinking.  Not easy to do, to be fair, but completely achievable with a lot of work and self-reflection.  To be successful at changing our thinking we first have to accept that the idea that we have virtually no control over our emotions and that we cannot help feeling disturbed about things is completely false. Instead, consider that we have real control over our destructive emotions - if we choose to work at changing the “musturbatory” thinking which we often employ to create them.

But what about our past experiences? Don't those determine a lot of how I react to things today?  Yes, they do. However, the idea that because something once strongly affected our life, it should indefinitely affect it is also false. Instead, consider the idea that we can learn from our past experiences but not be overly-attached to or prejudiced by them.

More on these 3 words and REBT in future posts.  In the mean time, evaluate your use of the 3 words in your day-to-day thinking.  Do you musterbate a lot?

Best,
Dr. T

Wednesday, June 4, 2014

Movie Review: Fed Up

12:53 PM Posted by Stephanie Horgan , , , ,
Yesterday I went to see a new movie that came out, called "Fed Up." It was at the independent theater nearby me, and I would highly recommend making time to see it. The documentary was produced by Katie Couric with Laurie David, a producer of "An Inconvenient Truth." The core of the movie asks, "Are all calories created equal?" The resounding  answer is no. All that "just decrease calories in, and increase your exercise" stuff that we have been told- it just isn't that simple. As the nighties told us to cut down on fat, all the products that were marketed to us, merely swapped the fat for added sugar.
I had read some reviews of the movie before it came to Chicago. Now, having seen it, I agree with some of the critics who say that the movie strongly demonizes sugar and can oversimplify the complex issue of obesity. However, I did like that it is raising awareness of the many chronic diseases that obesity and sugar contribute to. It describes sugar as a chronic, dose-dependent liver toxin, and one that leads to many of the chronic illnesses we have blogged about in the past.

Here are some more facts from the movie:
Nearly 17% of children in America are obese.
Lifespan projections are, for the first time, getting shorter generation over generation.
In the last thirty years, the number of cases of Type 2 Diabetes in adolescents went from 0 to 57,638.
I appreciated the time the movie spent addressing those who have limited food choices, such as kids at school who receive free lunch. So many of them do not have healthy options for their school meals. That is something we can press on our government about to change. But what about adults who live in poverty? I wish the movie had addressed food deserts and the tremendous challenge for those who don't have access to healthy food in their neighborhood. Some people have access to healthy food, but no money to buy it. It reminded me of the various mayors who have completed challenges to live on food stamps for a week. So who wants to take on a food challenge? Perhaps you'd like to try living on the $4/day you get when you are on foodstamps? Or maybe you'd prefer to go for 10 days without added sugar?  
This challenge of going 10 days without eating foods that have added sugar is given at the end of "Fed Up." There are so many foods with hidden sugar, and just today at lunch, I am amazed by how much I have already consumed by lunchtime. So grab a friend, go through your cabinets, and invest in some healthy choices. Your body will thank you. And while you are at it, write your legislators and tell them about how the big business of food has too much control! Together we can change this epidemic one person at a time.

Monday, June 2, 2014

Exercising for a Cause

5:12 AM Posted by Tiffany Taft , , ,
On Saturday I ran the "Dash for Detection" 5K for the Michael Rolfe Pancreatic Cancer Foundation.  I was part of "Team Eric" and ran in memory of my internship training director, Dr. Eric Van Denburg, who died of pancreatic cancer in 2011.  We raised over $6,000 for pancreatic cancer research, part of over $160,000 raised this year via the 5K.


There are so many runs, walks, and bike rides over the summer that aim to raise awareness and money for a variety of conditions.  The most widely known are likely the Avon or Susan G. Komen breast cancer walks. Because not everyone has the advertising budget these organizations do, we'd like to highlight some smaller events happening in our area that you may be interested in joining or donating to.

Never run before?  Check out the Couch-to-5K training plan.

Airway Diseases
Fight for Air Ride, June 13-15, Crystal Lake IL to Lake Geneva WI.  Benefits the American Lung Association.

Battle to Breathe 5K, June 22nd, Wheaton IL. All profits raised will go toward the American Lung Association and its mission to save lives by improving lung health and preventing lung disease.

CowaLUNGa 2014 Bike Tour, August 2-4, Gurnee IL to Hubertus WI.  Benefits the Respiratory Health Association.

Cancer
Dan Horyn's Skokie Swift, June 8th, Skokie IL.  Benefits the Daniel M. Horyn Foundation for esophageal cancer research.

Bud's Run 5K, June 28th, Carol Stream IL. 100% of the proceeds after paying our expenses are given to the Sarcoma Foundation of America.

Tour for Cancer, June 28th, Freeport IL.  Benefits the Leonard C. Ferguson Cancer Center.

8th Annual Miles for Melanoma, July 12, Chicago IL.

Pennies from Heaven 5K, July 12, St. Joseph MI.  Benefiting young adults living with cancer.

12th Annual Run for Gus, July 24, Chicago IL. Event to raise funds for pediatric brain tumor research and Family Services programs at Ann & Robert H. Lurie Children’s Hospital of Chicago.

Celiac Disease
Alex's 5K RAGE, Sunday June 8th, Wheaton IL. 100% of the proceeds of this Team Gluten Free Event are going to the Celiac Disease Foundation.

Mental Health
Gina's Gallop 5K, Sunday June 8th, Arlington Heights IL. Gina's Gallop is a real reason to run, in memory of and in support of those who struggle with depression and thoughts of suicide.

Rally for Autism, August 16, Libertyville IL.  Benefits the Autism Society of Illinois.

Neuromuscular Disorders
Ride to Cure FA, July 20th, Channahon IL.  Benefits the Friedreich's Ataxia Research Alliance.

Organ Donation
Capital City 5K, July 26, Madison WI.  Benefits the National Kidney Foundation of Wisconsin.

Did we miss an event?  Let us know in the comments section.

Best,
Dr. T.

Sunday, June 1, 2014

Tidbits

5:13 AM Posted by Tiffany Taft ,
In case you didn't know, in addition to our sweet blog we're also on Facebook and Twitter (@OPBMed).  If you haven't come by to our Facebook page and "Liked" us, please do.  We're 15 shy of 300 likes and it'd be good for my symmetry OCD tendencies to have that at 300.  Until it hits 301, then I'll be uncomfortable again.


One perk about liking us on Facebook is our soon-to-be-award winning "Tidbit of the Day" series for 2014 where we post recent research news relevant to chronic illness, mental health, or both.  Here are some highlights from our Top 5 most popular posts:

Tidbit of the Day 4/22/14: More on the Brain-Gut Connection and ‪#‎IBS‬
Researchers from the University College, Cork suggest that psychological factors such as anxiety and depression may be central drivers of inflammatory changes in IBS rather than inflammation originating in the gut itself. Cytokines are a family of molecules that modulate the immune response; some promote inflammation (pro-inflammatory cytokines) and others reduce inflammation (anti-inflammatory cytokines). Elevated levels of the cytokine interleukin-6 (IL-6), a pro-inflammatory cytokine, is found in the blood in those with IBS and higher levels of IL-6 are associated with depression and anxiety in those with IBS. This association of mood with cytokine activation exists more so than in healthy controls who were presumably psychologically healthy.

Tidbit of the Day 5/15/14: Should Mental Health Screenings be Included in Well-Visits for Teenagers? Mental health is just as important as physical health. Sometimes mental health is easily overlooked. Depression is seen in 5-20% of teenagers. Sharolyn Dihigo a nurse practitioner at the University of Texas at Arlington researched a quick test called Center for Epidemiological Studies Depression Scale for Children (CES-DC) that patients would fill out in the waiting room before seeing a doctor. The doctor could then look at the results and determine if the patient should be referred to a mental health professional. Dihigo thought that it would be easier for patients to talk about mental health by giving the test to the patients before seeing the medical professional. Additionally the CES-DC is a short test with only 20 questions and asks questions about feeling sad, eating, and sleep habits of patients within the last week. CES-DC may help patients receive the correct treatment and start the conversation about mental health.

Tidbit of the Day 5/10/14: Impulsivity and Food Addiction
A recent study from Boston University Medical Center found that models who have impulsive tendencies and were presented with a diet high in sugar for an hour showed binge eating habits. Models who have less impulsive tendencies were also shown the diet high in sugar for an hour did not give into impulsive eating of the food. Impulsive models were found to have a greater activation of transcription factor Delta-FosB in the nucleus accumbens of the brain compared to the less impulsive models. This area of the brain is involved in pleasure and reward. Researchers thought that the Delta-FosB activation could be involved in food and drug addiction.

Tidbit of the Day 5/18/14: Mindfulness Training for the Marines
A recent study from the University of California, San Diego School of Medicine, and Naval Health Research Center looked at how mindfulness could help marines before and after combat. Mindfulness training involves awareness exercises of the mind and body including meditation. Trainees learn to become aware of sensations such as breathing, tightness in the stomach, and changes in heart rate. The researchers conducted the study by teaching the marines mindfulness practices before having them participate in a mock combat situation. They found that the marines that had the mindfulness training returned to their resting baselines faster than the marines without the training. Additionally, the marines with the mindfulness training improved their immune function and had less activity in the brain. Past research has shown that military personal who have high activity in certain parts of the brain are more likely to show symptoms of PTSD, depression, and anxiety. Mindfulness training before combat can better prepare the marines for dealing with stressful situations in combat and decrease the rate of mental illnesses that many veterans face.

Tidbit of the Day 3/18/14: Probiotics May Help Autism
A study in mice by the California Institute of Technology found that the microbes in the guts of baby mice with autism-like behavior differed from those who didn't display that behavior. The researchers gave the mice Bacteriodes Fragilis, a probiotic known to boost the immune system, and their abnormal behaviors subsided.

More of this great stuff every day for the rest of the year. If you already are a fan of our page, please share with people you think might be interested. Ok, shameless self-promotion over.

Best,
Dr. T