RheasOfHope

one girl's thoughts on life, mental illness, eating disorder recovery, and hope.

When you stand up for your health June 6, 2017

To say I have difficulties with doctors would be comparable to saying the Titanic had difficulties with an ice burg.

As early as I can remember, doctors have been expressing “concern” about my weight. When I first began gaining significant amount of weight—from what I now know to be binge eating disorder—my pediatrician informed my mother that I needed to lose weight–suggesting she lock her eight-year-old daughter out of the pantry (an act my parents took into consideration and often used as a threat against me). The same doctor later noticed that, around age twelve, I was developing scoliosis from that ever-present elementary school trend of carrying your backpack on one shoulder. She informed my mother that losing weight would alleviate some of the pressure on my spine; which would mitigate some of the pain I was experiencing. The binging continued.

In my teens, my pediatrician would frequently inform me that we should “probably start looking into how to lower your weight given your family history of heart disease, high cholesterol, and diabetes.” While it is true that heart disease, high cholesterol, and diabetes are as ubiquitous in my family as black hair or short stature, these scare tactics only turned an already overweight, binging teen towards increased binging in an effort to make the embarrassment of being called fat and fear of these “inescapable” diagnoses “disappear.” This, of course, only trended my weight even higher.

Near the end of high school, I began to experience some unusual feminine concerns—the solution to which was, again, suggested weight loss. It wasn’t until I had an ultrasound in college, that it was determined that these feminine concerns were actually ovarian cysts. I was told the cysts would have been easier to see had the ultrasound waves not traveled through the extra layers of adipose tissue—despite the fact that that was my first ultrasound and no one had postulated cysts in my numerous visits, as the concern was on weight loss. Once again, losing weight was suggested as a solution to my medical concerns. Unbeknownst to my doctors, during those first semesters of college I was in the beginning years of a restrictive eating disorder that thrived on being told I was overweight, and used those words to intensify the eating disordered behaviors.

In college, when I first sought counseling at my college counseling center for what I believed was an eating disorder, I was again rebuffed secondary to my weight, and informed that I was merely feigning an eating disorder because I did not know who I really was. Because, as we all know, no overweight person could possibly have a restrictive eating disorder or be engaging in purging behaviors. Her response to my eating disorder, combined with years of pediatrician shaming past, continued to fuel my ED-NOS. My general practitioner at the time, the infamous Dr. Khaki Crocs, also felt that an overweight individual could not have a restrictive/purging eating disorder. He diagnosed me with an adjustment disorder. His explanation, “an adjustment disorder is like, well, I could diagnose my nurse with one now. She turned 50 this month and has been having difficulty coping with it. You’re experiencing life changes, and you’ve likely lost your appetite because of it.” It was only after I produced papers from Lindner Center of Hope with a diagnosis of ED-NOS, that he added the eating disorder diagnosis to my chart—without removing his initial diagnosis of adjustment disorder.

After college, I began to notice my knee sounded like bubble wrap when I walked and that it would throb for hours after I exercised. This pain was likely intensified by the strict exercise regimen of my eating disorder that never took a day off or let me take it lightly. Dr. Khaki Crocs was dismissive of my concerns, but my pleading that my knee felt wrong was met with a sympathy MRI. The MRI showed osteoarthritis of my knee behind the patella—where the tibia and femur meet—crepitus, worn away cartilage/bone, and edema. Dr. Khaki Crocs and my physical therapist suggested weight loss. To this day, my knee remains the same. A co-worker even joked she knew I was coming because she could hear my knee cracking as I walked.The most endearing  moment with dear ol’ Dr. Khaki Crocs, however, was when I voiced my concerns about my weight trending upwards, and he wrote the following words on his prescription pad before handing it to me, “Welcome to adulthood.” Thanks pal, way to take my health seriously. You’re a gem.

A few months ago, Dr. Khaki Croc’s replacement—whose partner I got by virtue of his retirement—decided to address my weight. My blood pressure was slightly elevated (we’re talking 128/75, so not even high), likely due to my dislike of this woman and my fear of doctors. She took that as a cue to remind me of my family history of high cholesterol, heart disease, and diabetes—all of which are further complicated by obesity. I informed her that just the week before my blood pressure was too low at the dentist’s (because dentists apparently take blood pressures now), and the elevated pressure was likely a manifestation of my anxiety. She then suggested weight loss again as a means to lower that “too high” blood pressure.

Later in the visit, I expressed to her that I had noticed my weight trending upwards as of late that seemed out of context of my following my meal plan, reincorporating meat into my meal plan, and no longer purging. My dietitian had suggested that that weight increase could be secondary to a thyroid condition, my Effexor, or PCOS. When I relayed this to my doctor, she informed me that my two-year-old blood work showed no indication of thyroid abnormalities, that she’s been “prescribing Effexor and drugs like it for over 20 years and no one has ever lost weight when they went off of it,” and that “even if you had PCOS, it wouldn’t cause you to gain weight.” Her suggested treatment for my concerns was to “remove a couple hundred calories from your diet.” I explained that I’m recovering from a restrictive eating disorder, and that my dietitian uses the diabetic exchange system instead of calories—to which she rolled her eyes and replied, “Well, that has its own issues.” I left with her suggestion to restrict a few hundred calories and instructions to work out more–despite her knowledge of my history with disordered eating and overexercise. I, of course, shared this idiocy with my dietitian, and—after a laugh and mini-vent session–we continued on the same meal plan I already have.

Knowing that I deserved better than Dr. Khaki Crocs’ replacement, I sought out a new doctor last month. This doctor spent 45 minutes with me discussing my eating disorder concerns, my medical issues, my medical history, and what I want out of a doctor. Based on her conversation with me, my medical abnormalities, and past medical experience, she asked if I would be willing to do a blood test–as she felt I likely had PCOS. Forty-eight hours later, I got a message in mychart, “Your labs all look normal. These were done to see if things other than PCOS could be leading to your symptoms. No other signs of issues [were] seen, which does support a diagnosis of PCOS Your sugar is normal. Your cholesterol is good.” She was able to provide me with an accurate diagnosis and explanation for my weight gain in two days compared to the eight or so years I spent with Dr. Khaki Crocs and his croc-less replacement. She truly listened to me, addressed my concerns, and asked how we can worth to better my health without reigniting the eating disorder.

 

There is a powerful hashtag circulating right now–#TheySaid. The purpose behind this hashtag is for women to share their body shaming stories, how they overcame them (or didn’t), and to remind us of our shared humanity as women while empowering us to rise above body shaming. This is my #TheySaid, and my #SheReplied. Never forget your voice is powerful and necessary when it comes to your health. I don’t tell these stories to expose the inadequacies of my former doctors (though they are glaringly obvious) or in an effort to seek sympathy. I relay these stories to show that when you are fat, doctors only see fat. Your arm could be falling off or you could have lost all your blood, but when you are fat, the solution won’t be to reattach the arm or begin a blood transfusion. No. When you are fat, the first solution would be for you to lose weight. After you’ve lost weight, then they’ll see about the arm reattachment or giving you some blood. I relay these stories to remind people that they deserve appropriate medical attention at ANY weight. People deserve love and affection at any weight. People deserve life at any weight. Advocate for what you deserve–you are worthy.

 

Zephaniah 3:17

“The Lord your God is with you, the Mighty Warrior who saves. He will take great delight in you; in his love he will no longer rebuke you, but will rejoice over you with singing.”

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When they make you get an EGD February 23, 2013

Filed under: Uncategorized — rheasofhope @ 4:32 pm
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This is what you would have witnessed had you come with me to get my exploratory esophagogastroduodenoscopy (EGD) this week.

“Put these on” she said as she reached into an old blue locker and handed me a plaid pastel hospital gown and a pair of aqua socks, “I will be back to get you in a minute.” I waked into a small pastel carpeted stall, and drew the pastel curtain closed behind me. There must have been a sale on pastel décor when this office was being furnished; nearly everything looked like an Easter egg. With my body resting on the pale blue wall and my black hair covering my face, I offered up a prayer. I did not know exactly what to pray for; I did not want them to find anything wrong with me, but, on the same token, I wanted answers. Sometimes you do not have to know what you want when you pray, because God knows and will work it out for His good.

After I changed, the nurse came to take me to my bed. This is when the terror started to sink in—this was happening whether I wanted it to or not. The nurse tucked me into the white sheets like some sort of sterile burrito, hooked me up to a computerized blood pressure cuff, slipped a heart monitor on my finger, pulled up the railings so I did not tumble out of bed,  and started an IV in the crook of my arm. Then came the questions:

“So, why are we doing the EGD today, Rhea?”

Is it not on the paper? “Well, my food has been ruminating, I have had horrible heartburn and the belching makes me sound like a dirty trucker.” I often find myself using humor to disguise my fear and shyness.

She laughed, “OK, well, I am going to go through a list of symptoms and you stop me when one of them applies to you. Heartburn?”

“Yes.”

“Excessive gas or bloating?”

“No”

“Nausea or vomiting?”

“Well,” I hesitated, “I have an eating disorder,” I hate saying the words out loud. “And one of the behaviors associated with that is purging. Plus the whole rumination of the food thing I have got going on here.”

“So you’re bulimic?”

“No, I have a diagnosis of Eating Disorder Not Otherwise Specified. I purge, but do not binge. I restrict, but I am not underweight. I do not fit into a specific label of eating disorder as most people would view it.”

“But that isn’t active anymore, right? Like, you’re not doing that anymore?”

I cannot understand why, but I got very defensive of my ED at that moment. I felt stereotyped—which is something I find that I often feel due to my EDNOS diagnosis. For so long I felt like a fraud as an eating disordered person due to my EDNOS diagnosis, and assume other people feel the same way about me. My ED brain immediately fed me the message (pun intended) that she asked if my ED was still active because I was so fat; like it was unbelievable that I would have an ED. I replied, “I am in recovery, but it is still very much an active part of my life that I am trying to stop.”

“But you see someone for that right? You’re getting help?”

No lady, I thought I would give it a go on my own…seriously? No one can go it alone when recovering. “Yes, I see a therapist every week and it is going quite well.” I was so upset at the way I  perceived I was being treated that I do not recall any of the other questions. I know the questions stopped however, because she laid a warm blanket on me, closed yet another pastel curtain around me and called the doctor in to explain the procedure.

Next, my doctor pulls back the pastel curtain and sits on the end of my bed. “So, what are we doing today?” he asks.

Really? No one here knows why I am here today? Do you not write things down in that chart you carry around? Again, I explained my symptoms and why the test was being done. I said, “My food is ruminating on its own unrelated to my purging.”

“So you’re bulimic?” I just gave up on explaining and said yes. Why would it matter anyway? Clearly no one here understands EDs. The nurse stayed after the doctor left and started in with more inane commentary.

“If only we could get you to like yourself. Then you wouldn’t have to do this” she said, clearly referring to my eating disorder, “I wish I had enough willpower to have an eating disorder, but I love food too much. And this is coming from a fat person, but you’re not fat. I hope you’re seeing a professional about this. This isn’t something you can do your whole life. If you would just accept yourself this could all be behind you.” She went on and on without much acknowledgment on my part. Finally she got the hint that her insensitive comments and incorrect perceptions on EDs had struck a nerve and I did not want to talk about it anymore. Rather than let us sit there in silence waiting for the doctor to return, she decided to strike up another round of thrilling conversation. After rechecking the blood pressure cuff that was cutting off my circulation, she grabbed my wrist. “Whose initials are those?”

“No one’s actually. I think it is somewhat tacky to write other people’s names on your body. That word is oo-do-ge. It is the Cherokee word for hope.”

“Oh are you Cherokee?”

No lady, I just thought, “Wouldn’t it be cool to put Cherokee words that do not mean anything to me on my wrist? So I did.” I nodded and thought it was good that she did not see the NEDA symbol on my ankle.

“That’s cool. Do you know you can get scholarships for being Indian?”

“Yes, unfortunately, I do not have a record of my Cherokee lineage so I was unable to apply for those scholarships despite my being 1/8th Cherokee.” The angrier I get the more technical my vocabulary gets. I tend to try to stay level-headed during arguments by trying to find the right words to express my anger in a productive way.

Finally the doctor came in, gave me the sedation and I did not have to listen to their conversations anymore.

I woke up in yet another pastel room sitting next to my cousin Kylie. She, thankfully, was able to take me home that day and get me out of that doctor’s office.

I do not remember the doctor coming in after the procedure thanks to the drug induced stupor into which I was put. However, he gave me a paper with some pictures and said there was nothing wrong with me. The paper read “It is likely that her history of bulemia is contributing her to symptoms.” Seriously, bulEmia…he cannot even spell it!

Image

So I left the office with a huge medical bill, doctors/nurses who do not understand EDs, huge blood bruises on my arm where the blood pressure cuff was too tight, and no answers as to why my food is ruminating. On the bright side, nothing is wrong with me.

Isaiah 43:5

“Do not be afraid, for I am with you”

 

An open letter to the nurse at my GP January 15, 2013

Dear nurse with the curly red hair,

I apologize for addressing the letter this way, but I have never asked your name. I intend to do that at my next appointment as it is common politeness to know the names of those around you. Therefore, until I learn your name, I will refer to you as the curly red-headed nurse as you are the only red-head in the office.

First off, I would like to thank you for being you. You are the first nurse I have ever had that understands EDs. When I was embarrassed to tell my Doctor I had been diagnosed with an ED by the Lindner Center of HOPE and my therapist, you told me that you understand what I am going through, and that I should feel safe to address my medical concerns with you as a nurse. When I told you that the doctor refused to believe that I was sick—diagnosing me with an adjustment disorder believing that I was “going through a phase in my life that I couldn’t handle”– because I lied to him about my behaviors, you encouraged me to be honest with him so that I can get the medical tests necessary for living a healthy life. When I started tearing up in the office, you comforted me by telling me that there is nothing you haven’t heard as a nurse and that you’re proud of me for seeking the help that I need. Then, just like the last day of summer before school starting, you were gone. That appointment, in 2012, my doctor finally listened to me. I was honest about my behaviors, but those same behaviors also made me feel ashamed. It was so easy to talk to you about my concerns, but the doctor, in his crocs and khakis, scared me half-to-death. I felt like he was judging me with every behavior revealed. At the end of my appointment, he changed my diagnosis from adjustment disorder to ED. I even had the nerve to have him write in my chart not to allow the nurses to tell me my weight; which was quite an impulsive decision, but one that I was ultimately proud of. I was so appreciative that you listened to me, gave me the confidence to speak to Dr. Khaki Crocs about my ED, and spoke to me with genuine care.

When I came back last November for chest pains, you lead me down the hall of pictures to the SCALE. I tried to stop and look at each picture of Dr. Khaki Crocs climbing this mountain or SCUBA diving to this coral reef or his son smiling in his Air Force uniform next to some shiny aircraft…anything to keep the scale from coming. You knew what I was doing; they must have taught you the art of patient stalling in nursing school. When we got to the scale you asked me if I wanted to get on forwards or backwards. That little bully voice in my said told me to get on forwards so I could watch you slide the little black weights across the slick numbers. You told me that forwards was fine, but that I had to close my eyes. You, again, knew exactly what I was going to do. When I peeked through my heavily mascara-ed eyes, I saw you covering the numbers with my chart. As mad I was that I couldn’t see the numbers, I was thankful that you had not let me see them…it would only allow ED to continue in my life.

When Dr. Khaki Crocs decided that I needed an EKG right then, I panicked. I had no idea what an EKG entailed. However, when he told me that you would be performing the EKG, I was instantly reassured. I knew that you would explain the process to me and understand my concerns. As you placed each electrode on my chest and ankle (PS…I still don’t understand why it had to go on my ankle, but whatever) I kept thinking how naked I was in front of a complete stranger. I don’t like seeing my own body, let alone letting someone else see. When I am nervous I stop breathing and get really quite; something you picked up on straight away. While connecting the electrodes and working on the machine, you talked to me. You asked me how therapy was going. You asked if I liked to read, and, when I said yes, you talked to me about “Life without Ed”. Having read that book, I talked to you about how fond I am of the authors Jenni Scheafer and Thom Rutledge. You spoke about how much that book has defined your life, and of your dream of hearing them speak in Cincinnati. Then I told you about my blog, and how ecstatic I was when Thom actually read and commented on it! Before I knew it, the once awkward test had become totally relaxed. When the test was over, and I learned my heart was beating normally, I was thankful that you had been there to calm me.

I had to go back right before my 25 birthday this January for a routine office visit. I hoped you would be working, because sometimes you’re not there when I go. I positioned myself in the waiting room so that I could see what nurses came to the door to retrieve patients. When I saw your red head pop out of the door I was relieved. When you came to get me, I knew the scale was next. I wasn’t scared this time, though, and didn’t stop to analyze each picture of Dr. Khaki Crocs cross country skiing or diving in the Bahamas or riding a bike up a mountain path . I went straight to the scale. When you noticed I got on facing forwards, you made me laugh when you said, with fake exasperation, “Look at the ceiling.” I wasn’t even tempted to peek that time because I already knew you had put the chart over the numbers. Then you took me back to the exam room. As I heaved myself onto the table (as the table is very tall and I am very short), something creaked. I, in an effort to lessen the embarrassment by making a joke, decided to say that I broke the office. That was when you pointed out that I wasn’t being gentle with myself. I had never thought of it that way before. I had always made jokes at my own expense to protect by self from threats from others I thought to be imminent, but I was really just tearing down my self-worth. I appreciate you for planting that thought in my head, because I do need to be kinder to myself. You then asked me how therapy was going. When I told you I hadn’t purged in two days you shared in my joy of not engaging in behaviors…genuine joy, not “I’m the nurse and I am paid to be here” joy. As I ran into you on my way out of the office, you quietly said, “Take care of yourself” as I walked back to the waiting room. Thank you.

It is not often that you get a nurse with compassion, empathy or understanding. I got all three when you pulled my chart. I also got the bonus of your understanding of EDs. But, most of all, I would like to thank you for kindheartedness. You always know what to say and how to make me think. I appreciate all that you are.

Sincerely,

Rhea