An Open Letter to My New Doctor

whoever you turn out to be…


open letter to my new doctor


Dear New Doctor,

Before I give you the rundown on everything that seems to be wrong with me, I want you to know I have no interest in prescription painkillers.

I had my tonsils out at 24 and was prescribed liquid hydrocodone and acetaminophen post op. It made me puke violently for days. I ended up dehydrated and delirious on the bathroom floor one Sunday morning. I remember calling my parents before they went to church and asking them to pray for me. I thought I was dying.

When I went to the Carle ER in 2014 with a gall stone but couldn’t be scheduled for surgery for some weeks, I was sent home with a prescription for Percocet. I tried taking one-quarter of the prescribed dosage. Uh, nope. Then after my gallbladder was removed, the surgeon prescribed Norco. I took it for a few days—because mother-of-god does being sliced open in four places and having an organ cut out hurt—but by day four I was so miserable I was flushing any pills that were left and cursing the little bastards as they swirled down the drain.

Why do I tell you this now? Because next I’m going to tell you that I was diagnosed with fibromyalgia last October, and I’d like to avoid the mistrustful side-eye if at all possible. Not that anyone seeking help for pain deserves the side-eye, but this isn’t about anyone; it’s about me. It’s been my experience that if you know this about me from the start, I will get better care.

You should also know that I have trust issues. About five months before the doctor at Carle ER discovered I had the aforementioned gallstone,  I went to a Presence Health ER in November 2013 with what I later realized was a gladdbladder attack. (I was pretty new to the area and writhing in pain, so I told my husband to pull up to the first emergency room I saw.) The doctor there gave me a GI cocktail and sent me on my way without ever touching my abdomen or ordering an ultrasound. The hospital paperwork said I had indigestion.

Then there’s the rheumatologist that diagnosed me with firbromyalgia. I’ve already written much about that story, so let’s just say he was a total jerk.

A part of me is so frustrated with doctors that I’ve given up thinking I’ll ever find one that takes what I say at face value. Far form being an attention seeker, I’ve come to loathe scheduling appointments with people in your profession. But I know I need to give you the benefit of the doubt too. So if you promise not to give me side-eye, I promise not to give you side-eye. Deal?

I’m not looking for a quick fix to my problems. I’m not even looking for a definitive answer (though it would be nice if we stumbled across one). What I’m really looking for is someone who’s curious,  likes to solve puzzles, and believes me when I say something hurts or is atypical for me. Someone who doesn’t take my insistence that a particular medicine or course of treatment isn’t helping as a personal assault on her intelligence.


Emily Suess

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The Problem with Fibro and Fibro Meds

fibromyalgia weight gainI don’t understand my body.

On Friday night, I went to bed about 10:30 PM. I got up for a normal breakfast, caffeine included, but couldn’t keep my eyes open once I had finished eating. So I went back to bed and slept until 3:00 PM.

Yes, 3:00 Pee. Em. That shit ain’t right.

A couple of times Dan checked on me. “Em, you know you’re not going to be able to sleep tonight.”

“I know but I can’t hold my eyelids up,” I replied. It was like I’d dosed myself with Benadryl, except I hadn’t done any such thing. Then I went to bed around midnight last night—a little later than usual, but not an absurd hour—and didn’t have any trouble falling asleep.

What the fuck, body? What do you want from me?!

In other fantastic news, I’ve already put on another 5 pounds since the doctor appointment from hell. That’s right, 5 pounds in 12 days. I know some people think that girls can’t do math (stink eye to the doctor for condescendingly suggesting I see a counselor or dietitian), but I assure you I can.

My basal metabolic rate is currently somewhere around 1670 calories per day. I’d have to eat 500 bonus calories every day to put on one pound a week. I’d have to eat about 1,250 bonus calories EVERY DAY to put on 2.5 pounds in a week. Plus, I’d have to stay in bed every day and do nothing.

Getting on my FitDesk means I’d have to eat the daily BMR allotment of 1,670 calories, the 1,250 daily bonus calories, and then eat back everything I burned while I pedaled. Same goes for any and all other calories I burn working, cooking, walking, cleaning, or whatever all week long. Now, I’m not terribly active due to pain, stiffness, and fear of falling when muscles randomly give out. But still! That means averaging 3,000+ calories a day, minimum.

Having the pounds sneak up on you over the years? That’s easy to do. I take full responsibility for my expanding wasitline up through the end of October 2014. Putting on weight like this? It takes effort. Or perhaps help from—oh, I don’t know—an underachieving thyroid or a new prescription.

I’ve done some web searching for a new primary doctor, and so far no one’s jumping out at me. I will call for assistance selecting a new physician tomorrow, but I’m not exactly optimistic. What if the next one doesn’t work out? What if I have to start all over again with a third doctor?

I miss the days when all I needed a doctor for was an antibiotic script for a sinus infection. “My sinuses are killing me. My snot’s green. Kthxbai.”


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Thank You for Your Kindness

CaptureA huge and heartfelt thanks to everyone who sent cards, gifts, and get well wishes from Cheryl, her family and me. The thing about these random acts of kindness is that they don’t just impact one person. Everyone who witnesses something good happening around them gets a little pick-me-up too. So your kindness stretches farther than you can even imagine.

If you’d still like to send a note to Cheryl, or you’d like to send another one, feel free! The original project centered around Valentine’s Day and Random Acts of Kindness Week 2015, but your notes of encouragement can arrive any time.

As you can probably imagine, recovering from a stroke while being separated from family and friends can be a slow and frustrating process.

Send a get well wish by snail mail

Cheryl Gregory
Room #: Warrick 312
C/O Serenity – St. Mary’s
1116 Millis Ave
Boonville, IN 47601

Send an online greeting to be printed & delivered by hospital volunteers

St. Mary’s – Send a Patient Card to Cheryl Gregory – Room #: Warrick 312

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Christie Clinic Responds to My Open Letter

Christie Clinic responds to fibromyalgia patient's complaint.For those of you following along at home—god, I always wanted to write that—I have a few updates to make regarding my Open Letter to Christie Clinic.

First, one day after I published the post and tweeted it to Christie Clinic, the clinic left a comment:


We were sorry to hear about your recent appointment. We would like the opportunity to improve the situation. At Christie Clinic, we believe in having a doctor who takes the time to listen and understand. Members from our leadership team would like to discuss your recent situation in more detail with you. At your convenience on Monday, can you please call us and speak with our patient liaison, 366-8034, about your experience.

Thank you for your comments. They will be shared with our management team and we look forward to speaking with you about your recent appointment.

I had mixed feelings when I originally saw it. On the one hand, it’s just your standard social media damage control response. It’s sufficiently polite and vague, but it puts the onus back on the patient. “Can you please call us.”

Ugh, no thanks. I spent a lot of time composing my letter. Don’t make me start over. Don’t ask me to listen to promises that you’ll tell your manager about the situation.

Eventually, though, my skepticism gave way and I began to see the comment as evidence that someone at Christie Clinic noticed. That was something. I still wasn’t going to call a patient liaison though. Because, hello, I have fibromyalgia and frequent insomnia and two jobs and my meds cause dry mouth and uncontrollable coughing and yawning any time I speak.

Seriously, I’d rather carry a stray cat’s stool sample to the vet in a perforated bag than endure the scripted pain of a customer service call.

So I didn’t call, and then a funny thing happened. On Tuesday, the clinic’s Chief Operating Officer left me a voice mail, which I returned the next morning. The most surprising part of the call wasn’t that he apologized for the problem, offered to assist me if he could, or explained to me how the clinic was addressing the problem—though he did do all those things. The most surprising part was that he read both of my posts and spoke about the problem IN CONTEXT.

When does that ever happen? I mean the reason most people loathe customer service calls (okay, the reason I loathe customers service calls) is because I have to repeat the same information twenty times, futilely trying to bring someone who couldn’t give a rat’s ass about my problems up to speed. Not this time.

So while the appointment with the doctor was the worst doctor-patient interaction I’d ever experienced, the follow-up by the clinic’s administration was one of the best complaint resolution interactions I’d ever experienced.

For those wondering about the outcome of all this, I did ask the COO to keep me informed. Of course, anything HR-related is confidential, but I suppose there’s some potential for clinic policy to be amended as a result too. Mostly I just hope this event reminds the rest of you out there not to let the health care system swallow you whole.

Complain to family and friends to get the rage out if you need to, but always ALWAYS complain to someone with the ability to do something about it.

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A Patient’s Open Letter to Christie Clinic

patients open letter to christie clinicTo the Christie Clinic Board of Directors:

On Tuesday, February 10, 2015, I had an appointment with a doctor at your Windsor location. Having been diagnosed by this doctor with fibromyalgia late last year, I was due for a two-month check up, the purpose of which, I presume, was to make sure that the condition and the pain related to the condition were being managed adequately and that the benefits of the drug I had been prescribed outweighed any risks.

Instead of a helpful exchange with the doctor where I was able to voice my concerns, I endured a very frustrating three minutes in the exam room. I had planned to ask the doctor for his professional opinion about three things that concerned me, but was interrupted at almost every turn without even getting to questions two and three. That evening, I wrote an emotional blog post about the experience, which you can read here. I make no apologies for the language within that post.

My first concern was related to an irregular spike in weight gain. When I asked the doctor about this, he told me many times that there was nothing for me to do except exercise more and eat “food without calories.”

I tried explaining that the 12 pounds I had gained in the past two months was abnormal for me, that hunger signals weren’t suppressed even after meals, and that I constantly felt hungry. If that message got through to him, it was dismissed without discussion or explanation.

In my family, there is a history of high cholesterol, and my own blood work has shown that I already have high cholesterol. So my concern regarding my weight is not merely an issue of vanity. Putting on additional pounds can make my cholesterol even more difficult to control. I might have had an opportunity to explain this to the doctor as well if he had paused for a moment or two to stop admonishing me about diet and exercise.

When I could finally get a word in, I very frankly asked if there were any possibility the weight gain could be related to my thyroid. (After receiving radioactive iodine therapy for an overactive nodule about a decade ago, I, as expected, developed hypothyroidism. I take medication daily for an underactive thyroid, and the doctor was aware of this. Not only was it discussed during my initial visit with him, but it was also included in personal health records maintained by the Clinic.)

The doctor unequivocally told me that my thyroid condition could not be causing my abnormal weight gain. Maybe I am just gluttonous and lazy, but the fact that he never tested my thyroid levels since I started the fibromyalgia prescription gives me zero confidence in his assumption.

Underactive thyroid is listed as a rare but severe potential side effect of the medicine I was prescribed. And, of course, weight gain is a common symptom of an underactive thyroid. In addition, the following verbiage can be found on the personal prescription information leaflet that accompanies my fibromyalgia prescription:

“CONTACT YOUR DOCTOR IMMEDIATELY if you experience […] unusual weight changes.”

And then there’s this additional disclaimer at the end of the extensive list:

“This is not a complete list of all side effects that may occur. If you have questions about side effects, contact your medical provider.”

As a patient seeking assistance from a medical professional, the best tool I have to advocate for my health is my voice. If I am cut off, if my concerns are dismissed, and if I am rushed out of the exam room, or if I have any doubt at all that my doctor is actually listening to my feedback, the doctor-patient relationship has deteriorated to the point that negative health consequences are a real concern.

Like many other patients for whom money is a significant problem, I understand that medical services are never going to be cheap. However, when your clinic receives a $50 co-pay before I even see the doctor, and then my insurance company pays hundreds more after my visit, I expect to be given more than three minutes with the doctor. I also expect that the doctor will not repeatedly cut me off during that time. So, you tell me: Does my doctor lack interpersonal skills? Does Christie Clinic incentivize doctors for rushing patients away? Is it some combination of both? Or does my doctor just want to make sure I continue taking the medicine he prescribed regardless of its effectiveness or consequences?

After reviewing information reported at, I learned that my doctor received over $3,000 in combined payments from pharmaceutical companies AbbVie and Pfizer in the last quarter of 2013. While neither of these companies manufactures the drug that has been prescribed for me, the fact that he takes payments at all from Big Pharma makes his decision not to investigate my concerns about the drug, his decision not to discuss alternative treatments, and his near-threat that if I reduced my dosage I would suffer more pain, seem even more dubious. I will be watching as drug company payments to this doctor are reported for 2014.

As a result of this experience, I have very little confidence in my diagnosis. In fact, some small part of me now wonders whether the diagnosis was merely a means to placate me as a result of some preconceived notion that I am an attention seeker. If fibromyalgia were indeed taken seriously by my doctor, I can’t believe he would flippantly tell me to keep pushing myself to exercise without, at the very least, inquiring about my current activity levels. And if he doesn’t take fibromyalgia seriously, why is he diagnosing it and prescribing for it?

I am sure you are annoyed that I’m putting all these questions to you, the Board of Directors of Christie Clinic, rather than taking them directly to the doctor in question. But I think I’ve already established he doesn’t listen to me. Perhaps you will. Perhaps you will look for ways to make Christie Clinic a more welcoming clinic for patients instead of just another pharma-friendly facility perpetuating the highest-cost, least-care-possible model of business that frustrates so many of us who require frequent access to health care services.


Emily Suess
Champaign, IL


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