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Showing posts from January, 2014

Living in the 5%

No, I'm not writing about income inequality.  Good lord, I'm not that crazy.  I'm referring to the experience of experiencing the "rare" outcome.  You know the statistics.  They come with every treatment or procedure that we're subjected to.  The percentages are typically small, indicating the risk is very small, that something will turn out other than positive.  If they weren't, the FDA would punt these things right off the market.  Even medications with so-called "black box warnings" have risks for serious side effects under 10%.

So what happens when you find yourself in that elite group of people who fall into this "rare" situation?

I've worked with clients who are in this club and have personal experience, as well.  According to the "official" statistics for the widely used drug Infliximab (brand name Remicade), around 3% of people in a sample of about 5000 patients experienced a reaction during one of their infusion…

Can't Buy Me Love

With all the stress that goes along with a chronic illness, there are emotional and mental aspects that go along with it. These are things that Tiffany and I spend time talking about with our patients. But on top of all this, illnesses cost us a lot of money! Financial burden is a large source of stress and I wanted to share an updated list of resources for patients with Inflammatory Bowel Disease. Last year I posted about a few of these organizations, but it is important to check back every six months or so to see if their funding has changed. 
Here is an updated list of resources, and many of the links below are also helpful for other chronic illnesses, so please explore and save some money. If you have money leftover (doubtful!), donate to a cause you like or to someone trying to find a cure for your illness! Some organizations focus on co-pays, some are for medication costs, and some are for other miscellaneous costs. Let me know if you find others! 

Patient Access Foundation: Thi…

Medical Marijuana: The Good, the Bad, the Ugly

Marijuana is in the news a lot lately, what with Washington state and now Colorado making recreational pot legal and readily available.  As of the writing of this entry, 20 states and the District of Columbia have legalized marijuana for medical purposes, including our home state of Illinois.  Our goal isn't to discuss the controversy or debate about if pot should be illegal, rather shed some light on what people living with chronic illness think about it, how often they use it and for what conditions, and some of the side effects it can have.
In 2009, worldwide marijuana use, medical or recreational, was between 3 and 5%; in the United States, rates were around 11%.  Unfortunately marijuana isn't the panacea that it's biggest supporters claim, but it does have documented health benefits.  It isn't the calamity that it's biggest opponents claim, either.  Like with everything, the reality lies somewhere in the middle.  There are several potential negative effects of…

In the Spotlight: Achalasia

I'm kicking off our "Rare Disease of the Month" series for 2014, where Steph and I bring awareness to 12 chronic illnesses that don't get much press but still can deeply affect those who live with them each day.  I thought I'd start with a rare digestive illness, since that's my schtick, called Achalasia.

Snapshot:  Achalasia is a rare condition that impacts about 300,000 Americans.  It makes eating quite challenging as the muscles in the esophagus stop working properly due to a breakdown in the nerves responsible for moving food to the stomach.  People with Achalasia are at risk for developing esophageal cancer and should be monitored by a gastroenterologist.  There is no cure and treatments are limited but can be effective in keeping symptoms under control.  Thus, there are significant impacts on the person's social and emotional life.

What is it?
Achalasia is a condition where the nerves in the esophagus break down for an unknown reason.  The result is d…


Happy New Year, everyone! We are wishing all our readers a happy and healthy 2014. Now that we are past the hectic holiday season, we are left to look ahead and plan for the upcoming year. In reflecting on my past year, I noticed how my brain immediately went to the things that went wrong or the things that didn't come to fruition like I had hoped. Its funny how that happens. Part of it is human nature- we are hard-wired to remember and avoid situations that were painful for us. But there is an element that I want to focus on today, and that is comparison. It is when I start looking at others who have what I want, that I start coming up short. When I made a list of the top then things that happened this year, I was astounded by how good I felt! That all goes out the door when I start the game of comparison.

Our society is built on this concept, and there isn't an advertisement out there that doesn't tap into this. We are supposed to look at the various marketing in the med…

New Year, New Look

Just a quick hello and Happy New Year to you!

We've updated our blog layout to be a bit more interactive and hopefully easier to navigate.  If it's lousy or a PITA, please let us know.  Please also let us know if there are any topics you'd like for us to cover in the coming months and we'll do our bestest to make sure we write about them.  Here's a preview of some things we've been chewing on for 2014:
The doctor-patient relationship, including knowing when and how to fire your physician.Medical marijuana, what it can help with, what it may harm, and what people think about it.Complimentary & Alternative Medicine (aka CAM), including acupuncture, biofeedback, and herbal supplements.Each month we'll highlight a rare chronic disease, give an overview and review research (if any) on social and emotional issues.The impact chronic medical illness has on siblings.Transitioning from pediatric to adult medical care.An overview of different types of psychiatric …