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

Wednesday, January 30, 2013

5 Things You Don't Know About Your Therapist

6:41 PM Posted by Stephanie Horgan ,
In the spirit of getting back into blogging, I am going to be using some prompts, as I have noticed one of my biggest barriers to sitting down to write, is feeling like I have nothing to write about. Today, I am choosing to disclose five things you don't know about me. As Tiffany as said in a past blog post, therapists and clients have a unique relationship, where professional boundaries are important, and much thought should be given before sharing. Typically the client does most of the sharing in the therapeutic relationship, although tonight its my turn.   So sit back, I have a lot of pent up sharing that I don't get to do :)

1) Back when I was a special education teacher, I was bit by one of my students...in the stomach. He went in for a hug, knowing I would be so happy he was showing emotion for once, and then latched onto my midsection...with his teeth. His teeth weren't just any set of teeth, he was armed with a double row of baby teeth on the bottom. Why, you ask? I don't know; perhaps just for this occasion.

2) I am still close with multiple friends from grade school. I am learning as I grow older just what a feat this is. As the seasons of life change, friendships change with them, and I am proud and grateful for the people I still keep in touch with. There is deep value to having people in your life that have known you and your family for decades.

3) I didn't eat cheese until a few years ago; now I eat it daily. Growing up, I hated the texture of cheese- it was cold, rubbery, and just plain gross. The only mac and cheese I would tolerate came from Kraft. Then one day, I decided to give it a try again, after much prompting from friends, and found I liked cheese! Its hard to go a day without it and it reminds me how my tastes and preferences change over time.

4) I'm part of a monthly cooking club with a bunch of other non-therapists. Its a chance to try a new recipe each month, and devour what everyone else has made, according to the night's theme. The most recent theme was Chinese New Year, and I attempted Honey Chicken, which actually turned out!

5) I backpacked Europe after high school for a semester. I was with a friend and visited about 10 different countries, which was exactly what I needed at that point. College came once I got back, but having that gap helped me explore, become independent, and grow up into the person I am today. I would post an actual incriminating photo, but my scanner is broken.

So there you have it...5 things you didn't know before reading this entry. There may be more where this came from. Hope you enjoyed!

Friday, January 18, 2013

Be inspired.

12:56 PM Posted by Stephanie Horgan ,

Hello online followers-

Its been a long time since I've posted, and I've been dealing with my own health issues. As a patient, I am continually reminded of what a journey of learning it is when dealing with chronic illness. As soon as you think you have learned a lesson or mastered a skill, you get another opportunity to learn it again in a new way. I am happy to say that I am out of the hospital and have a new appreciation for the little things, and the baby steps of progress I am making.

But enough about me...I wanted to pass along some inspiration that I ran across this week. The first is an inspiring local teen from Park Ridge, IL, who has chronic pain from a connective tissue disorder. She is 17 years old and started a non-profit that gives strangers a chance to make a card for a child who is in the hospital. Check out her website to see what all she has done so far and how to make a card for someone who needs one. Small ways to reach out really do make a big difference.

The second story is about our good friends at Girls With Guts, a non-profit helping those with Inflammatory Bowel Disease or Ostomies. They have a new outreach program where people who have their ostomies reversed can donate any new, unused ostomy products. These will then be given to new ostomates who may need help with the cost of supplies. This is a brilliant idea and I am so inspired by this organization's continued creativity to meet the needs they see around them. If you don't already do so, read their blog or follow them on Facebook.

I hope everyone has a happy and healthy weekend (and 2013 for that matter)! Its good to be back in the swing of things.


Monday, January 14, 2013

Our First Tweetchat & Thoughts on Stigma

6:04 AM Posted by Tiffany Taft , , , , ,
Tomorrow, January 15th at 8:00 EST we'll be co-hosting a Tweetchat with the folks at Treatment Diaries.  In case you haven't heard of them, Treatment Diaries is an online community where people can write and share about their life with a chronic illness in an anonymous way.  It's a great website, so check it out if you haven't already.

Our Tweetchat is on your emotional and social life when living with a chronic illness.  We've written several blog entries on this, which we summarized some in our Treatment Diaries guest blog entry. So many things go into this and we only have 1 hour, but we think it will be a fruitful discussion, and we will learn so much from those who join in.  We hope to teach a few things while we're at it, too.

One topic we'll also be addressing is stigma toward those with chronic medical illnesses.  My doctoral dissertation was on stigma perceptions in people living with Inflammatory Bowel Disease, and I've done a few studies on stigma in Irritable Bowel Syndrome and comparing these 2 conditions.  They're all on Pubmed if you're interested in reading more.  When an illness is stigmatized, the person is treated as "less than" those who are deemed normal.  Erving Goffman was really a pioneer in studying stigma, something that has been around since people, and said this:

"While the stranger is present before us, evidence can arise of his possessing an attribute that makes him different from others...and of a less desirable kind - in the extreme, a person who is quite thoroughly dangerous, bad, or weak. He is thus reduced in our minds from a whole and usual person to a tainted, discounted one. Such an attribute is a stigma, especially when its discrediting effect is very extensive; sometimes called a failing, a shortcoming, a handicap.*"

Goffman goes on to compare the differences in stigma experiences in people who have openly visible traits that may be stigmatized and those whose condition may be invisible or concealable.  This is an important distinction for those living with chronic medical illnesses as many of these are invisible, so much so that there's an entire week dedicated to them.

When we have an invisible illness, we are discreditable (as Goffman put it). We must decide whether to disclose or not, when, and to whom.  We then run the risk of becoming discredited. So telling others about an illness can be like navigating a mine field.  But, we do know that 100% concealment of a chronic illness is more stressful, more detrimental to your health and well-being than telling someone.  So it's important to talk and share with those who are safe recipients of your story.  What you say and how much you say may vary from person to person, but it's important to talk.  Which is why sites like Treatment Diaries are important.  Advocacy groups like The Great Bowel Movement, Hibbs Lupus Trust, and the CURED Foundation are important.

Conversation about all aspects of life with chronic illness is where we should be focusing our attention as health care providers and patients.  I hope you're able to join us tomorrow evening for the Tweetchat.  Follow us on Twitter @OPBMed, @Treatdiaries, #treatdiarieschat.

*Erving Goffman, "Stigma: Notes on the Management of Spoiled Idenity.

Tuesday, January 8, 2013

Guest Blog: The Birth of a Warrior

5:46 AM Posted by Tiffany Taft , , ,
Today's entry is by Amanda Kasper, who shares her story of how her life was impacted by chronic illness in 2011, and how she is using her experience to guide her graduate studies in Public Health so she can be an advocate for those with chronic medical illness.  Thank you, Amanda, for contributing this wonderful piece to our blog.


The best day of your life 
is the one on which you decide
your life is your own. 

No apologies or excuses. 

No one to lean on, rely on, or blame. 

The gift is yours. 
It's an amazing journey.
& you alone are responsible for the quality of it. 

This is the day your life really begins. 
..Bob Moawad..

Almost more months ago than I remember, every moment I wasn't at work looked like this. Camped out at my favorite Starbucks, merely two blocks from my vintage city apartment, I spent evening hours and weekend mornings consumed in the process of applying to graduate school. Writing and rewriting and crafting personal statements for each school, requesting transcripts, asking for letters of recommendation, doing research, finding inspiration. 

Post college graduation, I had very purposely followed my passions - the sciences, writing, helping others. Each different experiences, each filled with qualities that I wanted to combine to create my perfect job, to fulfill my calling in life. In the fall of 2010, I applied to graduate programs both in Genetic Counseling and Public Health, still trying to determine how to gracefully juggle all of the pieces I was looking for - biological, psychological, psychosocial, emotional, supportive. 

In August 2011, I sat in my first graduate school course - Health Behavior and Health Education - as part of the University of Michigan's School of Public Health. I knew I was interested in public health genetics, in the ethical, legal and social responsibilities of new technology and advancements, but mostly I knew I wanted to work with people - finding ways to improve their lives or their outlook on life or the ways in which they were navigating their own journey's. 

Well, down every road there are pathways you never imagined, dark tunnels you never planned to crawl through, obstacles that change everything. I was hospitalized three times between October 24 and December 7 of that year for severe abdominal pain, nausea, vomiting and diarrhea. I couldn't keep weight on or food down. My mom was making the trek between Chicago and Ann Arbor. My friends were trying to take care of me while balancing school and work loads. I was attempting to even attend class, let alone keep up with the work. Something had to change. In December of 2011, I transferred from the University of Michigan to Northwestern University, and moved back into my childhood home - needing a reprieve from the world, to retreat for the winter, and to in some way, nurse my health back to life.

Being admitted to Northwestern was unimaginable for me. It had always been my dream school, and the idea of joining a professional program with other multidisciplinary students broadened my dreams and my perspectives of making a difference so quickly. The first quarter was everything I could've imagined and more. I was studying the Social Determinants of Health, with a focus on Chicago, epidemiological principals surrounding the difference between health and sickness, and the laws, management and policy behind our healthcare system.

Even though my brain was enthralled and I seriously loved doing school work, my body couldn't keep up.  On the first night of my second quarter at Northwestern, I was admitted for a two and a half week hospital stay. I tried desperately to keep up with my readings, to skype into classes that weren't already being recorded, to stay in touch with my professors. Unfortunately, it just wasn't feasible. I withdrew for the quarter, with the hopes of being able to catchup during the summer. 

My health and my mental status took a drastic turn between that night in March, and the hot days of June and July. I was in no way ready for summer courses, I wasn't allowed to leave my house without a chaperone due to the amount of conflicting medication I was taking, and I was nearly always in the fetal position. Nothing dulled the abdominal pain. I still wasn't keeping food down. I felt frustrated. And maybe even a little hopeless. Trying to coordinate doctors appointments and referrals and medication schedules and being so ill all the time - I was overwhelmed. 

I was worn out, and didn't know how to continue fighting for myself.

In August, I began with a new team of doctors at Northwestern Medical Faculty Foundation, the hospital associated with my graduate university. Through a plethora of trial and error, I somehow found a small amount of relief and with less medications, more ability to function. 

Operating at about 35% capacity, I returned to school the last week of September, terrified out of my mind about the academic responsibilities in front of me (including three courses, travel logistics, an internship, and a proposal for my thesis project). Additionally, I felt as if all that time walking down long hospital corridors and waiting for nurses, trying to interpret information in the state I was in - it had changed my perspective. The lightbulb went off in my head. I knew what my calling was, and always has been. 

Through different ways in my life - I have always thrived on advocating for others. I was a peer mentor in both high school and college. I became a Court Appointed Special Advocate (CASA) in 2009, and have spent nearly the last 4 years tirelessly advocating for two very special kids in DCFS care to find safe and permanent housing while getting their academic, physical and psychological needs met. 

The internship I began this fall at the Center for Jewish Genetics provides me the opportunity to be an advocate in the community for genetic testing and new information and technology available to individuals. 

Through the last fifteen months consistently, I have experienced the symptoms and the life of a patient with IBD (Inflammatory Bowel Disease). I began to join support groups and advocacy groups and created a great number of friendships - others who were living a life that looked and felt just like mine. I started to help them think aloud through challenges with work or school or relationships or navigating the health system, so many opinions, the influences of their family or friends - and again, fell back into a role I felt so comfortable with - advocacy.

As I begin looking for my ideal job post graduation, I've realized that somehow, the pieces of my life have integrated together in a way that I never planned for. Everything I've done has lead to everything I'm doing. I'm in exactly the right place, and after a horrific and terrifying year of the unknown, I've found significant gratitude and peace in that understanding.

The research I'm working on for my thesis project has offered me the potential opportunity to continue after graduation, using grant funding from the National Institute of Health to explore the connection between women with IBD and their knowledge of and access to reproductive care. This is often a topic dropped by both GI and OB/GYN doctors, and patients are left without realizing the complex contraception issues they could be facing at any time.

Patient advocacy offers the opportunity to work with individuals like myself or my friends and others, younger, and older, facing one or many chronic illnesses, over the long term. To establish relationships. To offer trust. To be the constant in their lives. When it comes to making and attending appointments, receiving referrals, navigating the complex medical system, gaining access to medication, financial assistance, job retention, and care related assistance, patient advocates provide care, consideration and assistance to patients and caregivers who desperately need it.

As I continue to fight for more research, different medications, alternative therapies and specialists whom only communicate with each other upon my request, my own medical journey has significantly shaped my research and my career path. As I step forward into the unknown, into life after graduation and what that will mean for both my health and my job, I feel confident that my passion, compassion, understanding as a patient and as a healthcare professional, and my drive to help others will lead me in the right direction.

Amanda Kasper is a writer, reader, quote lover, CASA advocate, and non-profit believer, seeking space as a lifelong learner, passionate lover, and irreplaceable friend. She is currently trying hard to balance life with Trigeminal Neuralgia, Interstitial Cystitis, Fibromyalgia (FMS), Chronic Fatigue Syndrome (CFS), Orthostatic Intolerance, Raynaud's Syndrome, Median Arcuate Ligament Syndrome (MALS), visceral hypersensitivity and a form of Chronic Gastrointestinal (GI) pain and challenges alongside the last two quarters of graduate school, her internship, and her thesis project. Amanda tweets at @AKasper513 and blogs over at “& this I believe” and can be emailed here

Wednesday, January 2, 2013

5 Things You Didn't Know About Sleep

12:19 PM Posted by Tiffany Taft , ,
We all know we should get enough sleep, but do we always take care to do so?  In this month's Monitor on Psychology the topic is sleep and how it impacts our health.  Some of these findings may surprise you.

1.  Sleep restrictions directly affect your weight.  Do you have "lose weight" as one of your New Year's resolutions?  Then you might want to evaluate your sleep habits.  A 2012 study in the American Journal of Human Biology found that sleeping less than 6 hours per night was significantly related to increased body mass index and obesity, especially in children and adolescents.  Reduced sleep changes your metabolism, appetite regulation, hunger, and food intake patterns.

2.  The less you sleep, the more unhealthy you eat.  Related to #1, but important regardless of if you're trying to lose weight, is that the less you sleep the poorer dietary choices you make.  People who sleep 5.5 hours or less per night consume more calories, especially from fatty foods, and are more likely to snack during the day.  Unfortunately, they're also not increasing their activity to burn off these extra calories.

Must. Eat. Bacon.
3.  Restricted sleep affects insulin resistance and immunity.  This factoid is important for any of our readers who are living with diabetes, as sleep deprivation can affect how well your body processes insulin.  A 2012 study in the Annals of Internal Medicine found that in people who get less sleep their bodies are about 30% less efficient in responding to insulin levels in the body.  Another interesting finding is that people who get less sleep are less responsive to immunizations in that antibodies to commonly given shots such as Hepatitis B or the flu are lower in people who have gotten less sleep.

Wait, I got a shot and it's not as effective?!
4.  Lack of sleep exaggerates your perception of pain.  Lack of sleep obviously impacts your mood.  People who are tired often feel irritable or depressed, and this can increase feelings of "bodily discomfort" - or aches and pains.  But more goes on beneath the surface.  A 2007 study in SLEEP found that sleep deprivation increases the body's production of a chemical called Interleukin (IL)-6 which is involved in pain sensitivity.  Higher levels of IL-6 lead to greater perceptions of bodily aches and pains. For our readers with Inflammatory Bowel Disease, IL-6 has been found to play a critical role in inflammation in IBD.

5.  Your boss has an impact on how well you sleep.  Stress has a direct impact on many people's ability to sleep, with many people reporting laying in bed awake thinking of the 87 things they need to get done at work by the end of the week.  But how does your boss affect your sleep habits?  A 2010 study in the Journal of Occupational Health Psychology found that people with less-supportive managers sleep about half an hour less per night, on average than those with supportive bosses.  So working for Lumbergh can have a direct effect on your sleep, which in turn can affect your health.

I'm also gonna need you to come in on Sunday, too.
So how's your sleep been?  Check out our blog entry on some tips to improve your sleep habits in as little as 2 weeks.