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Showing posts from 2016

13 Reflections on 2016

2016, what a year eh?  The Cubs won the world series (!!!).  Donald Trump was elected president (???). We lost Prince and David Bowie and Mrs. Brady :( :( :(. People are saying it's the worst year yet.  But people say that every year, probably since the inception of calendars.

I'm going to go out on a limb that 1665 or 1863 or 1942 were worse years than 2016.  By a hair.

I don't like to bitch about an entire year because I know that we humans are programmed to filter out the positive and focus on the negative.  It's supposed to be protective, keeping us in tune with our environment so we don't get eaten by a predator. But in our non-predator based world this mechanism often just turns us into a bunch of Negative Nancys.  Nancies?  Whatever.  Nancy has a bad rap, anyway.

Today is the last day of IBD Awareness week, 2016.  I've enjoyed following all of the stories from people living with Crohn's disease or ulcerative colitis via social media, including insp…

Oh, Hey!

Greetings, blog readers.

You may or may not have noticed, but our blog has been deactivated for the last few weeks.  I'd like to say it was because we were overwhelmed by the simultaneous anxiety and ecstasy of the Cubs playoff run and World Series victory.  Sorry if you're in Cleveland and are reading this.  Maybe next year?

Alas, it was for a different reason.

I don't want to get into it too much, but let's just say being a semi-public figure while being a patient is a weird, weird place to live sometimes.  Don't get me wrong, I'm not even implying I have any sort of celebrity status.  But I'm out there enough to show up on many Google search hits (that must count for something, right?)  When I put personal information out on this blog, as I have the past year with my experiences with EoE, it creates a vulnerability.

Some people in the world have difficulties with maintaining boundaries. Combine this fact with the aforementioned vulnerability and it can…

The Most Amazing Breakfast

My posts have been all negative Nancy lately and that's not how I am usually. I swear. Maybe you've seen that thing going around social media to sum up your persona via 3 fictional characters.  Mine looked like this:

Pippi Lucille Gibbons. So let's shake things up; how about some good news on this fine autumn Saturday?

2016 has been an interesting year for health.  I was looking at my MyChart account the other day and noticed I'm coming up on 1 year since my first upper endoscopy that put me on this EoE with IBD path. 365 days. Time flies when you're having fun! 

If I took the time to add it all up I'm pretty sure I've amassed between $7 and $7 million in medical expenses since then across 8,456 doctor's appointments, tests, medications, and one very enlightening inpatient stay.  Managing my health has literally been a part-time job; except I don't get paid. 

This whole mess keeps evolving and blogging about it has helped me process it all.  Plus, I…

Side Effects May Include...

I'm old enough to recall the glory days when it was illegal for pharmaceutical companies to directly advertise to consumers on television.  The first drug commercial I remember is the one for Prozac, with the little animated circle-person looking all sad and being followed by a rain cloud.  Then he/she takes a pill and befriends a happy blue bird.

My Google search informs me that this was, in fact, not an ad for Prozac but for Zoloft.  So much for that, Pfizer.

Now it seems like you can't watch TV without coming across a drug commercial.  In parallel with people driving in convertibles, sitting in bathtubs in flower fields, or Mike Ditka throwing a football through a tire is a voice-over person listing the potential side effects and risks which always seem to go on for days.

People living with chronic illnesses also live with chronic side effects.  And they live with chronic risk for developing another, sometimes more serious, problem from their medications.  My personal favo…

8 Things I Learned While Inpatient

Hi.  This is long.

So I've had Crohn's disease since 2002. Unlike many of my peers, I've never had to go into the hospital. The only surgery I've had was done on an outpatient basis. My symptoms have never gotten to the this-is-super-bad level. Needless to say, I've been pretty fortunate.

Last week I had my first inpatient hospital experience, aside from having my kids. I didn't go in because of Crohn's disease, but because of a complication likely related to my medication. I'd been feeling really run down with a low grade fever for days but had no other symptoms other than some minor Crohn's activity that I barely considered a problem. My medication, Cimzia, has specific instructions not to take if you have an infection and I was due for my shots. I texted my gastroenterologist and she recommended I get blood work to see what was up.

So I went and did and saw what was up, which was that my total white blood cell count and neutrophil (the par…

When Your Medication Stops Working

It's 4:48 am as I sit down to write this.  I've been up since about 3 after waking up at 1 for the second night in a row.  This is familiar territory as insomnia is a big warning flag that the ol' Crohn's disease is getting up out of its corner to have another tantrum.  Been here, done this.

Except this time there's a big difference from flare ups of recent memory - I'm being a good patient and am taking my medication.  In the past I would stop my meds due to pregnancy or stubbornness or worry about side effects.  You've seen those Humira commercials right?  May cause cancer, heart disease, or serious or fatal infections.  You know, standard side effect stuff.

Since 2004 I've been on 3 different anti-TNF (tumor necrosis factor) drugs to treat Crohn's:  Infliximab (Remicade), Adalimbumab (Humira), and my latest Certolizumab Pegol (Cimzia).  Remicade and I had a short relationship as I developed an allergy after about 6 months.  This was back when Remi…

Sweet Home Chicago

In case you missed it, I live in Chicago.  Well, I live in the suburbs of Chicago again, not far from where I grew up because parents = free child care.  The suburbs are OK, I suppose, but I'm more of an urban gal.  Which is why our practice is located in Oak Park.  Technically a suburb, but the first one just west of Chicago.  You can get downtown via the CTA, or "L", as we like to call it.  It's a whopping 10 miles to the lake (Michigan).

Chicago has a lot of reputations.  I'd say our most recent is being the murder capital of the country because we have a bit of a problem with shootings in our poor neighborhoods.  A culmination of extreme segregation, oppression, and gentrification into neighborhoods that resulted in the razing of low income housing and disrupted well-established gang territories.  But that's a whole other set of conversations.

Today I want to talk about food.  Specifically, two things Chicago is world famous for:  pizza and Italian beef. …

Déjà Vu

I've probably had Crohn's disease since high school - which was in the early 90s; I never went to the doctor because I never had major symptoms until I was much older.  I did have mind numbing fatigue and random joint pains through college, but I chalked it up to knee surgery I'd had when I was 14.  Even if it was in the wrong leg...I mean I must have been walking funny to favor the injured side.

It wasn't until I was 26, working more than full time hours in the corporate world, that I had blood in a bowel movement.  Ok, if I'm real about it the toilet bowl looked like it was full of kool aid.  It was a lot of blood and it was scary.  I talked to a friend of mine at work who I knew had some digestive problems and asked her what to do.  She had seen a great gastroenterologist at Northwestern and told me to go see him.

"Do you really think I need to go?  I'm going on vacation in a few weeks." This was my logic in response to filling a toilet with blood…

No, I Don't Have Gluten Sensitivity

I have a lot of good people in my life.  Since my 20s, I've adopted a "low drama" friend strategy in that I don't have friendships with people who create unnecessary bullshit.  It's a good method, you should try it if you haven't already.

I also have a job where I'm constantly talking to people, listening to their stories, sharing parts of mine if it's appropriate (therapy relationships are strange things). What do I mean by appropriate?  When I'm meeting with a client, that hour is their time.  It's about them and what they're dealing with that day.  We're taught in graduate school to establish boundaries for many reasons I won't get into here, but boundaries are a good idea and therapists vary on how strict or loose they keep boundaries with clients.  Like a lot of things in my profession, this is a grey area.

I've heard some crazy stories of loose therapist boundaries.  Cray. Zee.

I tend to land somewhere in the middle.  I h…

Results Anxiety

I stood and stared into my refrigerator this morning for about 5 minutes.  Not because it's empty except for a lonely bottle of ketchup.  We're fortunate to have food in our house, including a host of fruits and vegetables that I get from the internet (Door to Door Organics).  Because I'm lazy.  Actually it was the bowl of apples that drew my stare.  I love a good, cold apple.  Preferably honey crisp or fuji or granny smith.  Red delicious run too much risk of being mushy, in my opinion.

I don't want to eat any more apples.  The thought of eating another apple sends me into a catatonic state, staring into my fridge.  I look around at the other food, most of which is off limits to me right now because I'm still on the elimination diet.

My endoscopy wasn't clear.  As my GI doc put it "It's not too bad" but I still have inflammation in my esophagus and stomach, plus some new stuff that I don't really want to even think about.  It could be nothing…

Test Anxiety

T-minus 3 days until my next endoscopy.  You'd think with the sheer volume of times I've been through medical testing, it'd be no big deal.  Yet here I sit, waiting for Tuesday, 9 am, to arrive so I can get my esophagus checked out to see if this diet I've been on is actually working at a physiological level.

 I want to think it is, I am better.  But I still have some symptoms depending on what I eat - rice, for example, takes a bit to make it down the ol' pipe.  It could be something as simple as there's some narrowing going on from the inflammation I had so I need a dilation, or my gastroenterologist will every-so-carefully stretch my esophagus back to it's normal width with some type of tool that I don't even want to think about.  It probably belongs on Game of Thrones or something.

Full disclosure, I've watched about 3 1/2 episodes of GoT.  Enough to hate Joffrey like the rest of the world.  That's about it.

I do get propofol for sedation, s…

Let's Talk About Soy

Who knew a 3-letter word could be such a royal pain in the ass?

Living in the #1 state in the union when it comes to soy production (Go Illinois!) I knew it was a commonly used legume. According to the internet, and the government's website on soy production, the vast majority of soy grown in the US is consumed by animals. The next most common use, and subsequently the bane of my existence the past 2 weeks, is that it's made into oils which, in turn, are used in everything.

Ok not everything.  I have yet to run into soybean oil in a container of strawberries.  But there's still time.

As I mentioned in our 200th post, I've started a strange elimination diet in that it's not the typical six/eight food elimination diet commonly used as a treatment for eosinophilic esophagitis (EoE), rather a modified version that allows fun things like dairy and eggs but excludes things like celery and apricots.  The diet is based off of skin prick allergy testing I had in May, which …

Post 200: Doubling Up

Greetings and salutations.  Welcome to our 200th blog post!  It'd be more exciting with necessary fanfare if our blog hadn't been defunct since January.  And most of 2015 if I'm honest. I've really dropped the ball on writing and am making a pact with myself, and you all, to do more of it going forward.  I might change what I write to more personal stories in addition to our usual fodder.

So what's new with you?

Yesterday, May 19th 2016, was World Inflammatory Bowel Disease (IBD) Day.  And tomorrow, May 21st 2016, is the last day of Eosinophilic GI Disorder (EGID) Awareness Week.  We sure have a lot of awareness days, weeks, and months don't we?  I personally am all for advocacy efforts, especially for diseases that are poorly understood, not well known, and potentially stigmatized.  I get my panties in a bunch when corporations come in to make a buck, like when they made those pink drill bits for breast cancer awareness month.  No.

Twitter was full of great in…

Caring for Crohn's Interview (repost)

Welcome to 2016, blog readers! Since its been a busy season for both myself and Tiffany, we are starting by reposting a wonderful interview that we did exactly three years ago back when we were new at this whole business thing. We've come a long way, but a lot of the things we talk about in this interview with our friend Rebecca at Caring for Crohn's still hold true. Thanks again for your support and spreading the word to all your chronic illness pals!  Caring for Crohn’s Interviews Oak Park  Behavioral Medicine (reposted from 1/7/13)I recently had the opportunity to ask Dr. Tiffany Taft and Stephanie Horgan ofOak Park Behavioral Medicinesome questions for Caring for Crohn’s and I am very excited to share the interview with everyone. From L to R, Dr. Tiffany Taft & Stephanie Horgan Oak Park Behavioral Medicine, located in Oak Park, Illinois, specializes in working with adults and children living with chronic medical illnesses. Dr. Taft and Stephanie are experts in the psyc…