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

Monday, August 7, 2017

Don't Tell Me I Have An Eating Disorder

5:53 AM Posted by Tiffany Taft , , , , ,
dis·or·der
disˈôrdər/
a disturbance in physical or mental health or functions; malady or dysfunction

I was in New York this weekend for the annual meeting of the American Neurogastroenterology and Motility Society, a gathering of experts in the field of functional digestive illness. This year had a heavy psychology presence, which was pretty exciting since psychology was integrated into most sets of talks on a certain topic or condition. Because, you know, psych is important.


On Saturday, Dr. Sarah Kinsinger, now director of the adult GI behavioral medicine program at Loyola University outside of Chicago, spoke on the topic of eating disorders. Sarah and I worked together at Northwestern for about a decade before she moved on to start the Loyola program. We talked a bit the day before about her presentation and she expressed some concerns about the potential for controversy due to the highly sensitive nature of the topic.

If you live with a chronic illness that makes you feel nauseous 23 hours a day or causes vicious abdominal pain or explosive diarrhea or constipation that makes your guts feel like they’re full of cement, you’re probably going to adjust your eating habits. It’s the logical and protective thing to do.

Temporary changes in diet are sometimes recommended to people with digestive illness.  Low residue or even enteral nutrition are used for active inflammatory bowel disease. Elimination diets for IBS (e.g. low FODMAP) or eosinophilic esophagitits (e.g. 6 food elimination diet) are evidence-based treatments regularly recommended by physicians and dietitians.

So who the hell are we to come in and talk about eating disorders in this context? Eating disorders are mental illnesses and the vast majority of people with GI illness are not mentally ill.

Traditional psychiatric eating disorders include anorexia nervosa and bulimia nervosa, with some variants based on symptom presentation, but overall these are the 2 most people have heard of. These are highly stigmatized conditions, even though the culture of the United States values thinness and equates it with beauty and health. That’s a whole other post. Hell, a whole series of posts.

 So when psychologists who operate in the gastroenterology world start talking about eating disorders, haunches can get raised. And I get that, both personally and as a professional. Let’s break down a few reasons why.

Back to the protective behavior of adjusting diet to control symptoms. I can’t think of a single patient I’ve seen over the past decade who came into my office and said “nope, haven’t done a thing to my diet since all this happened.

It’s a fundamental part of the information gathering I do when I meet with someone the first time - tell me about your diet and how it impacts your symptoms.

What have you tried to change? 
What works? What doesn't?
How does this impact your life? 

Answers range considerably, but overall I see some degree of food restriction, whether it’s a type of food (e.g. pizza or broccoli) or a group of foods (e.g. dairy), all the way to the extreme answers such as “I only eat white foods” or “I can only eat these 6 foods.”


People's relationship to food and eating can get dicey when, again, food is causing some pretty awful symptoms.  In an attempt to control these symptoms, we try to identify cause-and-effect patterns so we can make the necessary changes to feel better.  This is where the "disorder" thing can come in.  There's a line.

If I restrict my eating to the point my weight becomes unhealthy, this is a problem.

If I restrict my foods to the point I become malnourished, this is a problem.

If I become so anxious about eating that I avoid it as much as I can, this is a problem.

If I restrict my social life to the point of depressing isolation because of food, this is a problem.

Are these problems, either on their own or collectively, an eating disorder? Without the traditional criteria of fear of weight gain, body image distortion, or some other red flag behaviors absolutely not.

They are, however, disordered eating behaviors that need to be addressed.  But there's that word disorder again.  I honestly prefer to say unhelpful or problematic with my patients to avoid the sense of stigma that "disorder" when paired with eating can elicit in some.  But if we're honest, typically the behaviors that are intended to be solutions aren't solving the symptoms OR they're resulting in so many other issues both physically and psychologically that the person is still coming in to their doctor and they've been referred to me to help.  So something needs to change.

How do we change them?  That's complicated and a topic for another post that I'll get to soon. But I wanted patients to know that while us psychologists use the term disorder when talking about eating issues in digestive illness, it's much more complex than that 3 syllable word.

--T2

Tuesday, July 25, 2017

I Walk the Line

10:05 AM Posted by Tiffany Taft , , ,
Recently I ran a very scientific Twitter poll and asked people about how they'd feel if they found out their therapist had the same/a similar chronic disease as they did, if the disease was the reason the person was seeking counseling.

Here are the results:


Most people, 42 out of 49, would be thrilled to indifferent about the news.  However, 13% (or 7) would feel some concern or even switch therapists.  Since this is a very small sample of people, we shouldn't disregard that some people don't find this appealing.

I was diagnosed with Crohn's in 2002 and at that time was living a completely different life.  I worked in a corporate job writing code for .NET applications for a commercial real estate company. Exciting stuff, I know.  I was making a good wage, had health insurance (!!), and a clear career path laid out at 26.  I was also working on a huge project for Microsoft, as a client of the company I worked for, that I knew was going to fail.  We're talking 80+ hour work weeks, repeated trips to Seattle to try to essentially polish and roll out one enormous turd of a product upper management at the time decided was a good idea.

Then one day in February or so I went to the bathroom and created a crime scene in the toilet.  The rest is history. The annual mulling-over of my plan to return to graduate school for clinical psychology I'd done the last 7 years prior became a whole lot clearer and I walked away from everything to pursue my doctorate in 2004.  Bye, corporate Felicia.

The reason I bring up that history is, while my programming training took my analytical brain up a few pegs and made comprehending statistics easier, and my corporate days taught me invaluable lessons on navigating interpersonal dynamics and politics, I had to learn a completely new way of being and working that coincided with my new narrative of someone with an incurable disease.

When you learn how to be a therapist, they drive a few things in your head.  1) Boundaries with patients are vitally important, both for you and, more importantly, your patients.  2) Disclosure of personal information should be done with extreme caution and gravitas.  3) Don't have sex with your patients.  No really, don't do that.  4) Obligatory jokes about your mother, mind reading, analyzing people at parties will become status quo. And probably a few other things I've forgotten.

As someone who straddles the patient world and the clinician world, the first 2 on that list have evolved over the last 13 years.  If you follow us on Twitter or read this blog, you can see how I've opened up about having Crohn's disease, and as of 2016, eosinophilic esophagitis.  I still withhold a lot because I know patients, or potential patients who are Googling us, read our social media.  And stalkers. I had one of those, once.

As Twitter and Facebook and Instagram et al. either weren't around or in their infancy in 2004, and those who were users most likely weren't doctors or psychologists operating in the open under their real names, maintaining boundaries became trickier as social media use exploded, including among those who work in medicine.

If you ask 10 psychologists their thoughts on personal disclosure you'll get 7 different answers.  Opinions vary widely, from you should never tell patients anything personal to stories of completely inappropriate role reversal where the therapist is using the patient's time to work through their own issues.  Early on, I fell more to the "don't disclose" end of the spectrum but as I've worked with hundreds of patients over the years, I've learned the value of making myself less robotic and more human.  Keeping it real.  Whatever you want to call it.

Do I disclose in my sessions with patients my illness status?  Sometimes.  It really depends on the person and situation.  If I feel compelled to disclose, I do rapid mental calculations in my head about whether my disclosure will somehow benefit the patient, our relationship, and ultimately their treatment.  This calculation, to me, is critical. Whether a therapist has a chronic illness or wants to discuss any part of the human condition they relate to in their patient's story.

If the patient is newly diagnosed with Crohn's, or has never met anyone else with IBD and feels incredibly isolated, will my telling them "hey I have this too" help or will they launch into a lot of personal questions about my experience in an attempt to predict their own course?

If a patient with UC is struggling to reach their life goals with work or starting a family, will my disclosure that I have IBD and, thus, I have IBD and got a doctorate and am married and have 2 kids, help or make them feel worse because they compare themselves to me?

If I tell a patient with IBS that I have Crohn's disease as a way to relate to their symptoms, will that help or will they worry that I judge their disease as not as severe as mine?

If a patient with Crohn's is considering a new biologic medication, of which I've taken many, if I disclose my experience with these medications, including my own concerns about side effects, will this help normalize the patient's experience and generate a discussion of pros/cons or will they pick up on any biases I may have no matter how careful I am with my words?

You get the idea.

I can't really say how often I disclose versus not, I'd guess it's about 30% of the time I do.  That means 70% of the time I keep my status on the down low because it's just not appropriate with that particular patient. But in the back of my mind I will wonder if they've seen our social media posts or found information on the Google, and if they know.  

Then there are my peers on social media, other health psychologists, social workers, dietitians, and physicians who know my status.  What do they think?  Do I offer a unique perspective as both patient and professional?  Or does my patient status automatically cloud my clinical judgment and perspective?

I suppose the point of this blog entry is there's a hell of a lot behind disclosure as a therapist.  It's something to reflect on often, and accept you're never going to get it perfectly correct.  But I accept my dual role and will continue to share and speak up about my illnesses on social media and other patient and professional events where I deem it to be appropriate.  I feel like it'd be wrong not to at this point.


Fade out to Johnny Cash.....

--T2

Wednesday, June 7, 2017

Medical Gaslighting

4:14 AM Posted by Tiffany Taft , ,
Ever walk out of a medical visit questioning your own reality?  Like, what the hell just happened?  I am having symptoms, right?  They are serious, right?  I wouldn't show up to see a doctor if I wasn't actually in distress, right?

The term "gaslighting" has been around for a long time, gaining in popularity in recent years, as a way to describe a strategy of psychological manipulation to make someone question their own perceptions of reality.  The term comes from a 1930s play Gas Light where a husband goes to great lengths to convince his wife she's insane and her only tangible symbol of reality becomes the nightly dimming of the gas lights in their home.


Gaslighting is a malicious act.  I don't portend in the slightest that 99.9% of medical professionals intentionally gaslight their patients.  However, there are definitely qualities of our exchanges with the medical system that can leave us feeling, well, insane.

Fundamental to this, I believe, is the inherent power dynamic that exists between doctor and patient.  Some doctors are really good at keeping that as even as possible, but at the end of the day we as patient have an inherent vulnerability.  Throw in a flimsy exam gown and we're knocked down a few more pegs.

Recently, I had an emergency room visit.  I really dislike the ER.  Not for the obvious reasons, but because I feel like the ER is one of the worst places, but not the only place, for medical gaslighting.  You have to tell your story to at least 3 different people - the triage nurse, the room nurse, the attending physician, maybe a medical student or a resident, then if a specialist is summoned you tell them and maybe their resident.  It's like nobody communicates with each other, either verbally or via the electronic medical record.

The same questions are asked in a relatively robotic manner, and each answer is received differently based on each person's personality, perspective, and bedside manner.  You can tell the nurse about your pain and receive an empathic response and tell the attending physician the exact same words and have her imply you're drug seeking.

My recent ER trip was via my gastroenterologist's clinic.  So she took me there after an exam in her office for, let's just say a lot of bleeding (I'm fine).  I didn't walk into the ER and I actually was just going to go home but was summoned by my doctor to come in after I called her because, you know, bleeding is a bad thing.

My hesitancy to do so reflects what gaslighting can do to you as a patient with a chronic illness:  "It's just some blood.  Nothing to see here.  It'll stop.  I'll be fine."

Based on her office assessment, I wasn't fine and she took me to the ER where I proceeded to sit, with her in the room the whole time, for 5 hours.  We even talked about this very topic as the parade of ER people came through, did their exams, ordered their tests, and each interacted with me in a different way.  By hour 4, I looked at her and said "this is the point where I start to feel crazy."

I had bled enough to make my clothes look like a crime scene, yet I questioned my whole reality and perception of just how bad it really was.  My gastroenterologist of 7 years, who I trust implicitly, made the ER decision after her own assessment, yet I questioned my whole reality and perception of just how bad it really was.

The tests didn't identify the source of the bleeding (as I predicted), but a couple of things were ruled out, which was good.  I have to see another doctor to check things out, but I like him and he won't gaslight me so I've got that going for me.

For a while I thought I was wrong about this phenomenon, like my reality about medical gaslighting was wrong (I think that opens up a wormhole with Morgan Freeman on the other side).  A few months ago I took a good friend to the same ER who ended up being admitted for a few days, but not before she went through a similar experience.

The nurse that night was really phenomenal and he kept us informed of the test results, plan, etc. There was a shift change during our time there so she saw 2 different attending physicians.  The first one reported that she had a normal CT scan.  Unbeknownst to him, the nurse had read us the preliminary report verbatim about 15 minutes prior which did show some things related to her Crohn's disease, but nothing super serious.  She looked at me like "did that just happen?"  The second ER physician was worse than the first; I think he discussed her gut microbiome at some point but it was probably 2 in the morning by then and we were getting kinda delirious.

To me, it was obvious what was going on with her and it was serious.  Her gastroenterologist wanted her admitted and called the ER with her instructions after she spoke with my friend about the plan.  Yet this was essentially ignored and she was put through the same maddening process that left her feeling, well, insane.  It was somewhat validating to witness this first hand with another person.  Which sounds shitty, but it was.

Seeing her experience was my own gas lights to remind me that this isn't normal.

I'm not sure what the answer is other than being aware when it's happening and doing our best to remind ourselves that we're not delusional, that our symptoms are real, that our distress is real, and we deserve good medical care.

I want to end with a genuine acknowledgement that being a physician, especially an ER physician, is a really tough job.  There are people who abuse the ER, who are seeking narcotics because of an ongoing addiction, who lie about their situation.  I don't know what the actual percentage of ER visits is that fall into these categories, and I appreciate that this reality, and the reality of the whole damn system, can foster cynicism.  I would guess until some major changes happen in our medical system, gaslighting will continue to be something we, as patients, struggle with.

--T2

Friday, May 12, 2017

Yes, Insurance Covers Seeing a Therapist for Your Medical Illness

Well hey there boys and girls!  Long time, no blog.  I could get into the reasons why I fell off the wagon, but there are many and it'd be a long, drawn out story that isn't very interesting.  So instead of rehashing the past, I'd like to jump right into this post on a dry but critical topic.

Health insurance.

In the news a lot the past few months, isn't it?  That's not why I'm here.  I'm here for more pressing things like CPT codes.

I've been to a couple of conferences in the past few weeks and this has come up more than once, from both my physician peers and patient advocates:

Will insurance cover visits to a mental health clinician for issues dealing with a chronic medical illness?

The answer, Virginia, is yes.

Who the hell is Virginia?

In case you missed it, I'm a licensed clinical psychologist.  One of several types of clinicians qualified to do psychotherapy.  I hold a doctorate in clinical psychology (PsyD) which means I did 5 years of graduate school and at least 1 year of post-doctoral training before I took the licensing exam and actually passed it.  Clinicians with a PhD (doctor of philosophy in clinical psychology or counseling psychology) after their name have the same training.  The PsyD is a newer degree and has been around since the 1970s or so while the PhD has been around since forever (rough estimate).

Factoid:  By the time someone graduates with a PhD or PsyD in clinical psychology, they've completed around 5000 hours of clinical work.  Over half of it is done for free.

There are also people with a Master's degree who can get a license and will have the letters LCPC (licensed clinical professional counselor), LPC (licensed professional counselor), LMFT (licensed marriage and family therapist), LCSW (licensed clinical social worker), or LMSW (licensed medical social worker) after their name.

Factoid:  LCSWs have to complete 2000+ hours of supervised clinical work after finishing their degree before they can take the licensing exam.

Last, but not least, are psychiatrists (MDs).  Some psychiatrists still do therapy in addition to prescribing medications, but this seems to be getting more rare.

Stay with me, there's a reason for going into that.

Depending on what level of training the therapist has, they can bill insurance for seeing a person coming in for a medical illness differently.  I don't know who set up the rules, and they may vary by state.  My frame of reference is Illinois.  So please learn from me then investigate the rules in your home state.

When you receive medical care for any type of service the clinician will bill your insurance using Current Procedural Terminology (CPT) codes - 5 digits that magically convey to the insurance company what the clinician did during the visit.  Depending on what you're going in for, several CPT codes can be listed for one trip to the doctor's office.  There are LOTS of CPT codes.

In the mental health world, there are CPT codes specific to counseling/psychotherapy, psychological testing, family therapy, and medication management.  So if someone comes in to see me for just depression or just anxiety or just OCD, or all three at once, I use either 90834 or 90837.  The difference lies solely in how long I spend in the session - 90834 is for around 45 minutes, 90837 is for an hour or so.

In my little world of mental health + medical illness, there are very specific CPT codes called "Health and Behavior Codes." Remember that term.

H&B codes are 96150 for the initial consultation, 96152 for the therapy session, and 96154 if I meet with family members.  So if someone comes in to see me for Crohn's disease or lupus or cancer, whether they're depressed or just need a little help coping, I bill using H&B codes.

There is no session limit for my seeing a patient with H&B codes.  I can see you weekly for 27 years using H&B codes (might reflect poorly on my therapist skills, but that's beside the point of this blog entry).

Side note:  There also is no limit for outpatient therapy and the same 27 year scenario applies thanks to the Mental Health Parity and Addiction Equity Act of 1996 and 2008, as well as the Affordable Care Act.  However, some insurance companies still tend to be difficult about unlimited mental health services.  I rarely run into session limits in my practice, but I also don't bill with mental health codes that often.  Back to H&B.

The other cool part of H&B codes is I bill using your Medical Diagnosis not a new mental health diagnosis.  Whoa.  I'll try to summarize this in a simple example:

Joe was recently diagnosed with Crohn's disease and is feeling overwhelmed.  Joe gets a referral to see me because his gastroenterologist is on her game and recognizes the importance of mental health. He has Blue Cross Blue Shield of Illinois PPO, a plan I am in-network with.  Joe's initial visit is billed using the CPT code 96150 under his Crohn's diagnosis code (yep, more codes:  K5010).  He sees me for 12 sessions, each billed under 96152 and K5010.  Joe has a $20 co-pay for each visit so his out of pocket expense is 20 x 13, or $260.

These are the basics of health insurance and seeing a therapist when you're struggling with a medical illness.  There are differences between insurance carriers and even between plans at the same carrier.  I'll try to summarize some of the main ones but ALWAYS verify with your own insurance carrier that seeing a therapist is covered.
  • Network restrictions to benefits (in-network, out-of-network) also apply to therapists just as they apply to physicians.
  • Co-pays, co-insurance, and deductibles all apply to H&B code services, much like they'd apply to seeing your rheumatologist or gastroenterologist.
  • Therapists with an LCSW or LMSW cannot bill using H&B codes, at least in Illinois.  So my practice partner, Stephanie, uses mental health codes with a benign diagnosis of "adjustment disorder" when seeing the majority of people with medical illness in our practice.
  • Not all insurance companies recognize H&B codes.  Medicare does.  As does Blue Cross Blue Shield.  
  • Some therapists may opt to bill with mental health codes versus H&B codes due to differences in reimbursement.  This isn't illegal or unethical, rather up to the individual clinician or practice policies.
  • Most insurance companies recognize, and pay for, H&B services delivered via tele-mental health (e.g. FaceTime or other HIPAA compliant video chat). This is a whole other blog post, but the therapist must live in the same state as you.  We use it in our practice.

Calling insurance?  Here's what to say:  Hi, I'd like to see if I have coverage for specific CPT codes under my plan. When asked which ones, list these: 96150, 96152 (H&B) or 90791, 90834, 90837 (mental health)

I hope this was helpful.  Insurance is insanely complicated and can feel overwhelming.  The good news is it is very highly likely that you have access to mental health care for coping with chronic medical illness under your insurance plan.  I don't know what the changes happening in Washington DC will do to impact this, if anything.  If something shifts, I'll be sure to update ya.

--T2



Wednesday, December 7, 2016

13 Reflections on 2016

4:54 AM Posted by Tiffany Taft , ,
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 inspirational stories and raw, post-surgical stories complete with pictures to show us just how awful these diseases can be.  I think we need these polar opposite stories, and everything in between, to not only lift us up with hope but also let the world know just exactly what this f-ing disease can do to a human being.

I'm excited to get to meet several of these IBD patient advocates on Saturday at the Advances in Inflammatory Bowel Disease conference in sunny Orlando Florida.  I'll be moderating a panel discussion on patient empowerment.  And I get to see my mentor of the last 12 years who moved to New York in 2016 to run the IBD psychosocial program at Mount Sinai in NYC.  AND it's not going to be 25 degrees with snow on the ground.

Plus, room service.

My participation in IBD awareness this year has been less than stellar and certainly lower than in previous years.  I did make a poster via Crohns and Colitis UK:


I'm not sure why I didn't do as much, but I'll go with it's just part of the natural ebb and flow of living with a chronic disease.  Sometimes you're all in and sometimes you just want to put it on the shelf for a little while and not look at it.  You can see the latter is the case based on my facial expression.

Plus, this past year I've been forced to focus on the upper parts of my digestive tract and figuring out this eosinophilic esophagitis thing.  As of today, I'm still on an elimination diet with a PPI medication.  I'll have my 4th upper endoscopy in the next month or so to make sure all the eosinophils are gone and the ol' esophagus is as smooth as a baby's ass. With no diaper rash.

That's such a poor visual. I'm sorry.

So if 2016 is a dumpster fire of a year, then I'd like to look at both the negative and positive that I've experienced this year.  The bags of trash and the marshmallows, if you will. You can decide which is which.

1) We got a puppy.  Her name is Annabelle and she's a Plott Hound mix who showed up in the local humane society from down state Illinois.  Evidently the Plott Hound, a breed of German descent, is the official dog of North Carolina.  Who knew?  She's better at not peeing on the floor but yesterday she chewed on a chair leg for about half an hour before anyone noticed.

2) First inpatient hospital stay is under my belt.  A truly eye-opening experience that showed me how helpless you can feel while at the same time showed me I have an amazing gastroenterologist who truly has my back.  That provides a sense of ease that I can't really put to words.

3) I lost 15 pounds from my symptoms and subsequent elimination diet.  Screw Slim Fast or Atkins.  Want to lose weight? Eliminate soy, wheat, barley, peanuts, almonds, tuna, sesame, celery, and apricots from your diet for 2 months.  Then take out dairy, eggs, all tree nuts, all fish and shellfish for another 2 months.  You're welcome.

4) I discovered I have a secret admirer.

5) I met with clients living with cancer, IBD, IBS, MS, mast cell disorder, EoE, congenital heart defects, obesity, post-traumatic stress disorder, fibromyalgia, vulvodynia, bipolar disorder, cyclical vomiting, GERD, major depression, people hoping to undergo bariatric surgery, people who had bariatric surgery and it failed, and others, over 1,000 times. 

6)  I published a few research articles.

7) We have 2 post-doctoral fellows training with our practice.  One just filed her licensing paperwork and one is 3 months in.  More health psychologists!

8) Got my first iron infusion.  It worked in that it reversed the iron deficiency anemia.  It failed in that I did not become Wolverine.

9) Managed to stay compliant with Cimzia for a year, which for me is a victory because I sometimes like to go off my Crohn's medications.  Bad news is it's wearing off (probably because I've gone off and on the drug for the past 6 years because of pregnancies and being stubborn). I had to switch to 1 shot every 2 weeks rather than 2 shots once a month.  So far that strategy is working and maybe I'll get another year out of it.  Nobody knows and I'm not asking.

10)  I did not win the lottery.  I didn't play, either.  Suppose those 2 things are related.

11) The Cubs won the world-fucking-series!!!!!!!!!!!!!!!!!!!!!!!!

12) A close friend of mine with Crohn's had her 4th fistula surgery.  It worked but then at her follow up appointment with the surgeon they found another one.  Demonstrating just how cruel IBD can be.

13) In 23 days I'll have completed my 41st trip around the sun.  I'm alive.  The rest is secondary.

Happy 2017!

Monday, November 7, 2016

Oh, Hey!

1:10 PM Posted by Tiffany Taft , ,
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 cause one to take a step back to evaluate their online presence, blog included.  But, after some reflection, I decided not to recoil from this weird, weird world I live in and continue to bridge these two identities as well as I can.

It felt wrong to run away.

We have an orchid in our office that has been consistently blooming for 2 years.  I'm no botanist, but my previous orchid experience tells me this is an anomaly.  Hell, other orchids in other rooms in our office suite have come and gone, sometimes rather quickly.  Not this plant.  I've aptly named it "The Highlander" because a) I'm old and like to reference movies from the 1980s and b) anything that refuses to die in my life is named this.  I once had a plecostomus who jumped from a fish tank multiple times, survived a tank water heater mishap when all the other fish died, and went on to live for years.  Highlander fish.

This orchid has sprouted a new stem even though the current stem has 3 blooms open and another coming to life.  This is the most resilient damn orchid I've ever seen.

If this plant can keep going, so can I.  But if any of you decide it's a good plan to call me at 5 in the morning to wish me good health, don't.  Boundaries.

Highlander Orchid
--T2

Saturday, October 1, 2016

The Most Amazing Breakfast

6:19 AM Posted by Tiffany Taft , , ,
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'm keeping a record of my experiences that I can look back at when I'm 80.  Thank you to anyone who reads these.  I'm sure it's been enthralling for you.  Like the first season of House of Cards.  Or C-SPAN.


Onward! Positivity!

This morning I had the most amazing breakfast:  Udi's gluten free bread, toasted, with REAL cream cheese and some cucumber slices.  Whoa, right?

If I read that sentence a year ago I'd have thought the person writing it was a bit off.  Gluten free bread?  You mean a dried out brick made to look like bread?  Surely you jest.  Now cream cheese is a gift from the gods and cucumber is a staple of my diet.  But even those I wouldn't deem amazing. This breakfast isn't showing up on the menu at Alinea.  Or even Denny's.

Side note:  If you've never heard of Alinea, a restaurant in Chicago, or the story of its chef, Grant Achatz, read this story in the New Yorker.  Or any story about him: a chef that develops tongue cancer and how it propelled him to be one of the best in the world. Truly amazing.

So deprivation is a funny thing, psychologically. 

When someone tells us we can't do something (or have something) we're inclined to want whatever is off limits even more.  Suppressing thoughts or behaviors causes the brain to focus on them quite intensely, resulting in cravings or lying in bed at 3 am endlessly going over that one, possibly snarky comment our boss made in a meeting to us or what a Donald Trump presidency might be like. 


The apocalypse.  It will look like the apocalypse.

Then when we give give up on suppressing our behavior and go back to old ways, we tend to intensify that behavior - something we psychologists call the rebound effect.  This is why the vast majority of diets for weight loss don't work and people often regain the weight plus 10-15 pounds.  The coveted food probably tastes even better than it did before.

Hence my amazing breakfast this morning. 

So the good news is I've put dairy, eggs, fish, and shellfish back into my diet.  Eggs are a big deal because gluten free breads use them, and dairy means cream in my coffee.  And butter, so eating out will be a bit less daunting.  I also realized an error in my allergy testing report where I can, in fact, have buckwheat.  You may be asking "what the hell has buckwheat in it other than buckwheat?"  I'd have asked the same thing before but it's often used as a wheat flour substitute in prepared foods like snack bars or cake mixes.  Pretty much anything made by Enjoy Life foods (which makes truly tasty stuff) contains buckwheat.

Having less on the off-limits list is huge. YUGE! It's truly great. The greatest, folks.  Seriously. Couldn't be happier.

Not eating soy, wheat, peanuts, tree nuts, barley, celery, sesame, and apricots doesn't even seem daunting to me at this point.  Maybe the dairy/egg/fish/shellfish period was a good thing in that now the diet based off my allergy testing seems like cake.  Amazing, gluten free, buckwheat-laden cake. 

--T2