It's my medical appointment, and I'll cry if I want to: The Leaky Gut Medical System in Small Town, Illinois

I don't like confrontation. Historically, throughout my life, confrontation has made me cry. Whenever I had to discuss something serious (a grade, my feelings about something) with a teacher in middle school, I immediately felt like crying. When I got scolded publicly by my Combat instructor at Niagara University for stepping on my combat routine partner's penis, I felt like crying. Later, in the same class, when I tried to speak up in opposition to his criticisms of my final class routine, I could not speak without crying. Today I crossed a new threshold: a moment of confrontation with my primary care physician. Yeah, I cried during my appointment with my PCP and her FNP intern. It was extremely unpleasant for me, and probably very uncomfortable for them. Still, I am glad that I cried because that means I faced my fear of confrontation and spoke out. I am coming to terms with crying, trying to see it as something other than weakness and a source of embarrassment.

But this isn't all about crying in the doctor's office. This is also about my health journey as of late, as well as doctor-patient communication styles and skills. I'll start at the beginning: when we moved to Macomb, Illinois. We started seeing a doctor in town, Dr. Soo. We really like Dr. Soo - she listened and took our concerns very seriously and treated us with respect and didn't act like she knew everything in the world at the get-go and she was open to considering a variety of approaches. Did I mention she listened? She was also funny. But there was one problem that we encountered as her patient: her office staff members were some of the most miserable I have ever encountered. Two in particular, one nurse and one receptionist, stole the limelight in terms of being pictures of total misery. I'm going to NOT go with the narcissistic interpretation, and just assume that they were miserable with everyone (and not just us!). We didn't really mind the country music in the waiting room, and we actually enjoyed reading the Bible; however, we hated, hated, hated the hour or more we spent in the waiting room (even with a fussy baby Darah) every time we went to a scheduled appointment. I remember feeling miffed and astounded when we passed an hour, sitting there. We were part of the problem, we were just like everyone else in the waiting room: none of us spoke up about the extreme wait times. I always felt enraged and was convinced I was going to say something to Dr. Soo by the end of the waiting period; but, somehow, every time she came into the room, my anger went away and I was just glad to see her. I regret now that I did not let her know what I thought about the long wait times - maybe she would have done something to change it. But if no one speaks up, usually nothing changes; and in that instance, nothing changed. After seeing her for a couple of years, we learned that she was leaving town. We were sad about this. Even worse, though, was that I called every single other physician in town and not one was accepting new patients. Macomb was in trouble: all of Dr. Soo's patients needed new homes and no homes were available. So we decided to go to Monmouth (a half an hour away) for our primary care appointments, since they, in their clinic, were willing to see us. We had appointments scheduled to see a physician, but when we go there they informed us that the doctor was on call and in the emergency room. I did not understand why a doctor would make scheduled physical appointments with patients and also agree to be on call at the same time. But we learned that the practice was common in the clinic, and that physician's assistants were always available to fill in. So we saw a physician's assistant. After that, I was not enthusiastic about returning to Monmouth - first of all, we could not refill prescriptions without seeing the doctor (which is why we made the appointments to begin with), and, secondly, driving a half an hour away with two little kids in tow to receive treatment or have physicals with absent physicians was not ideal. I was annoyed. I called around again. I called McDonough District Hospital to inquire about the situation, and was told it would be three months before another doctor would be hired.

Then, while we were without a physician, we received a letter from our insurance company, saying that we had been assigned to Dr. Chen's office. I was very excited, because Dr. Chen was a woman. But when I called Dr. Chen's office, the office set up my appointment with Dr. Forres (because Dr. Chen was booked and would be retiring soon). So Sandy and I each had separate appointments with Dr. Forres. We were not impressed. I brought a short list of notes that I wanted to discuss, he picked up the note and chose one thing to focus on and ignored the others. His bedside manner was extremely rushed, and, as such, he was quick to assign labels to problems and was not patient-focused whatsoever. We both decided, immediately, that we would transfer to a new doctor as soon as it was possible to do so. Then something great happened: our daughters' pediatrician, Dr. Looker, whom we cherish and like very much, offered to ask her office-partner, Dr. Mealler, to take us in as patients (when we told her about our situation). We each had initial appointments with Dr. Mealler. His straight-shooting, laid-back, humorous approach appealed to us (and definitely was a fit with Sandy, since she likes medical appointments to be as easy as possible). I was still hoping to have a female physician, if possible, since it fits my feminist outlook well. I also thought it would be great for Sandy and me to see separate physicians. During my one appointment with Dr. Mealler, we explored the issue I was having with "mastitis." He sent me home with a prescription for an antibiotic, and the plan was for me to see if I had any more trouble (and then follow up on it, if so). I took the antibiotic for the full course, but for the last five days of my prescription I had a full body reaction of hives and itching. I stuck it out, but a couple of weeks later I had the problem with the Boob Flu once again.

I was excited when I heard that a new doctor, a female doctor, was coming to town in a couple of months: Dr. Roto. I called as soon as it was possible to call, because I was struggling with a severe breastfeeding issues (recurrent plugged ducts or mastitis), but I was told by Roto's receptionist that I would not be able to get in for over a month. So I waited. When I got in to see Dr. Roto, I was disappointed. A few years earlier, when I was pregnant with Darah, a fabulous OBGYN --Dr. Abbey-Herr-- with a warm, open bedside manner and a listening spirit and patient-centered approach occupied the same space that Dr. Roto now occupies. I had such warm feelings for the space, that I was convinced the experience with the new doctor in town would be a positive one. Unfortunately, I was wrong. It wasn't an all-out bad experience, it just wasn't anything inspiring. Dr. Roto, despite having a therapy dog who lives in the office, seemed unfriendly and disinterested and a little lazy to me (yes, just an initial, first impression). I talked about my issues with the mastitis, and she looked on her Blackberry (scanning info on the subject, I presumed). Then she pretty confidently told me that she didn't know much about breastfeeding issues, and that I should be seeing my OBGYN about this. I informed her that I did not think my current OBGYN, a born-again-christian man named Dr. Heckman, would be much help in the matter. It felt like seeing her was just a dead end. She came up with a prescription for an anti-biotic that I could only take after I weaned, and told me if I weaned to call her and she would call the prescription in to the pharmacy. I told her about my fatigue and irritability and headaches and backaches, and she recommended that Sandy give me massages. I was hoping she would work on my messed up back a little, but she didn't touch me. We had the kids with us, and she didn't seem interested in them. My take on her approach was that she wasn't interested in learning more about something: If she didn't already know about it (learn about it in medical school), then we need to go somewhere else to find out about it. So I left, feeling depressed that I didn't have any more answers and I didn't have a doctor who felt enthusiastic about helping me find solutions. The bottom line was that I needed to go back the see Heckman about the breastfeeding. So I did. I contacted Heckman and he, before seeing me, sent me a prescription for a Sulfa drug to the pharmacy (an antibiotic to treat mastitis). I took one of the pills shortly before going to bed, and woke up an hour later with extreme nausea and dizziness and itching. I saw his nurse-midwife, who kindly and efficiently delivered Elanah into this world, Midwife Garden. She, in her usually quick manner, listened to my complaints and assured me that I was not experiencing mastitis because there was no mass building up (no evidence on the outside of my breast other than redness) during the bouts of breast soreness and flu symptoms. She said that I was having recurrent plugged ducts cause by the high fat content in my milk supply, and that my body was responding to the plugged duct as though it was an invader (hence the flu symptoms). She also assured me that the fatigue and irritability were caused by my lack of and extremely interrupted sleep (Elanah, at the time - which lasted for sixteen months total, was waking up every couple of hours in the night to breastfeed and kick around). I felt a bit better, after seeing Midwife Garden, because she had some answers and at least made me feel like I was human. I felt like I could just go home and go through the Boob Flu and not worry so much about it. And that worked, in terms of the Boob Flu. But the fatigue and irritability continued, often getting the best of me.

One day, I had my friend, Shayna, over for tea; and I was telling her all about the situation. She was a patient of a doctor who I had some interest in seeing a long time ago, when we first moved to town: Dr. LiLi. Dr. LiLi is a hormone specialist who is highly selective in patient selection. I had tried to see her when we first moved to Macomb, but she would not see me because I did not have hormone issues. Since I now had potential hormone issues (potentially causing fatigue and irritability), Shayna suggested I make an appointment and tell Dr. LiLi. I did, and it worked. I filled out the extensive, extensive paperwork and made an appointment to see her. I called Dr. Roto's office, as I recall, for a referral; because I saw Dr. LiLi, not as my PCP but rather, as my hormone specialist. I did not know anything about her except for what my friend Shayna had shared (much positive regard). I figured I would see Dr. LiLi about the hormones and see Dr. Roto about everything else.

I found my first appointment with Dr. LiLi to be overwhelming (as was every appointment thereafter). Tons of information I had never before heard of, tons of diagnoses, tons of blood tests. She had already looked over my extensive paperwork, and had an idea of what road she wanted to go down. She immediately started explaining about hormones, and that she suspected my progesterone was low. She immediately said she wanted me to start taking a progesterone cream (1/16 tsp - no more, no less - a day of all natural cream for my thighs, sold by her office, made of extract from wild yams). I told her I was hesitant to do it, and that I suspected my hormones were out of sync because of the breastfeeding and because of the lack of non-interrupted sleep. She ignored most of the concerns I had, and continued on about my progesterone. But she said we would wait to see what results came up on the saliva test she was going to have me take. She also, right off the bat, asked if I had any food allergies. I said something, nonchalantly, about having had some when I was a kid but that I wasn't bothered by any currently. She said she wanted to do a blood test to check for allergies, food intolerances, and immune reactions/receptors. She showed me lots of information, and said it was based on Ancient Chinese Medicine. I felt totally overwhelmed, wishing I had Sandy with me at the appointment to help me gauge the situation. Her NP took SIX vials of blood from me (food allergy/receptor testing) and gave me a saliva test to complete at home. The saliva test required that I spit into vials every couple of hours, before meals. I had a dry mouth from all the breastfeeding, and I had a hard time not spitting up foam - but, alas, I completed the test and shipped it out. At my next appointment, Dr. LiLi showed me a packed of information about food allergies, and then she showed me my results from the lab test: they showed a high reaction/sensitivity to eggs (and moderate r/s to citrus, limas, sugar, wheat, soy, and oysters - among other low-moderate ones). She took me to websites where I could start buying gluten-free and sugar-free products, and she suggested that I start eliminating the problematic foods. Then she showed me my hormone test results. She showed me that my progesterone level was very low, and she explained that when progesterone is low, all sorts of problems may occur. She gave me the natural progesterone cream to buy from her office. I came home, once again, feeling overwhelmed and confused and wishing Sandy had been at the appointment. Dr. LiLi was nice and gave me lots of information about everything that she told me (even drew me diagrams of intestines); still, I felt like she put a lot on my plate in a way that made it feel insurmountable. I was not sure what I thought of it all. She was drawing links between my food sensitivities and my fatigue, as well as between food sensitivities and problems like cancer and Alzheimer's and M.S. (so she had me scared and skeptical and ambivalent and confused). I also had a stool test to take home: I had to poop into a paper french fry boat; and then dissect the poop, to collect portions from different regions of it and place the portions in vials with chemicals. Then I had to seal them up and ship them out, FED EX, ASAP. The morning I did the poop scoop, Adam was over, playing with the girls. I swear, I felt like the whole house smelled like a waste site for hours after I flushed the remaining poop down the toilet. I guess having the poop sitting out while I was scooping and packing OR putting it in the chemicals did something to make the smell last forever. But, thanks to LiLi and the Poop Test, I am now One with my excrement. How can I ever thank her enough!

I got smart, and brought Sandy with me to the next appointment. Dr. LiLi explained a lot of information to us that seemed to make sense at the time. My results showed that I have a lot of good forms of yeast in my intestines but that I have one unknown/uncommon BAD form of yeast (NOT Candida) living in my intestines (according to LiLi, the BAD yeast was possibly caused by preservatives or eating food that I am sensitive to or from taking antibiotics or ???). She said she suspected the yeast problem was linked to a larger problem, which she referred to as Leaky Gut Syndrome (or Leaky Bowel Syndrome) - in which the intestinal lining separates/forms openings due to the uncommon yeast and/or the intake of some harmful substance like sugars, refined carbs, preservatives, etc.). She said that the only way to start treatment and destroy the BAD yeast was to destroy ALL off the yeast (yes, that means my GOOD yeast is included). According to the/her theory, once all my yeast (the yeast living in my intestines) are killed off, then we can start fresh by putting only healthy foods in my system AND by building up my GOOD yeast reserves by taking a Pro biotic. A lot of what she said made sense at the time to us (and even after, when reading through all of the materials she sent home with us...Sandy did extensive investigating after the appointment); however, the treatment she prescribed troubled us. She wanted me to take an anti-fungal, Diflucan (Fluconzole), once a day for six weeks, while also taking a fiber product, Squeaky Clean, and a pro-biotic. She told me I would not feel well while taking the anti-fungal, especially at first - when all of the yeast in my system is being killed off. She said I would probably feel bad and foggy-headed. I warned her that I have nearly zero-tolerance for nausea, but she dismissed my concerns about that. I was very ambivalent about the treatment, but she seemed adamant and it was apparent that she truly believed it was the necessary course of action. So we left, and she put in a prescription for the anti-fungal (and sold us the pro-biotic over her counter). When I went to pick up the Diflucan from the pharmacy, the pharmacist counseled me, and warned me that they are highly suspicious of the prescribed time-frame given by LiLi. The pharmacist said that they normally see Diflucan used for one day. That's it. It's only used for a longer period, a week at most, in cancer patients. Needless to say, I was freaked out about taking the medication by the time I left the pharmacy. I asked Sandy to do some more research about it. She suggested that we focus entirely on the dietary changes: eliminating most sugars and refined carbs (as well as eggs). We worked at it for a while, and had a few sugar-binging setbacks. We held off on the prescribed treatment. LiLi had me do another test: this time it was a urine test to find out if I, indeed, had Leaky Gut Syndrome. I peed in a jug for six hours and then shook it up and poured some in a tube to be sent to a lab for testing. At the next appointment with LiLi, she told us that I was extremely positive for Leaky Gut Syndrome, according to the lab test. She said that she would not treat my Leaky Gut Syndrome until I completed the yeast-killing treatment. I told her I was nervous, but she reassured me it was necessary and then sent us on our way.

In the meantime, I had called my PCP, Dr. Roto, and made an appointment. I wanted to discuss all of this business with her, since I was feeling unsure and scared. I wanted to find out what she thought of LGS. When I called, I tried to explain this to the receptionist. I said something about needing a second opinion on the LGS, and I explained further. But apparently the receptionist only wrote "Second Opinion: Allergies" on my sheet (I saw it while in Roto's office today). I guess Roto had forgotten who I was and thought that I had left her office to have Dr. LiLi as my PCP (which I did NOT) and was coming back simply for a second opinion and not an actual appointment as her patient. It was this misunderstanding (likely caused partly by my poor phrasing and partly by the receptionist's poor note-taking and partly by Roto's arrogance and insensitivity) that led me to a very difficult, unpleasant visit with the physician today. The worst medical visit/appointment I have ever had, in fact. Sandy and I arrived (WITH the girls) to my appointment on time. We waited a short while, and then were taken back by a nurse. In the lobby, there was a sign about cell phone use. Something like, "Please do not put risk others' safety by using your cell phone." The sign in the room said, "Please do not take time away from your treatment by leaving on your cell phone." We find those cell phone signs annoying, in the same way that we find all the new signs that say, "If you are more than five minutes late, we reserve the right to reschedule your appointment and charge you for it." We find them unfair and needlessly rigid, given the inequitable power dynamics. I suppose the idea is that we can leave them and find a new doctor if we don't like their services - however, in Macomb, such a thing is NOT easy (so, in Macomb, the physician DOES have the dominant power...to be late or not, to charge you or not, to dismiss you or not). I suppose we, the patients, are free to wear signs on our backs to our appointments that say: "Dear People in the Medical Profession: Please do not use your cellular devices in our presence and please do not keep us waiting for longer than five minutes or we will dismiss you from your service." That would only work, as a method of achieving a balance of power, if MASSES of patients wore the signs. I like the image though. It would make a nice art piece. Picture a room full of annoyed patients sitting in chairs, wearing signs with rules and threats directed at their medical professionals. What a picture!

So, back to Roto's office. We were in there, waiting with the girls, for Roto to come in. I took out all of my paperwork to show her (I mistakenly thought she might be interested) and to help me remember things. When she came in, she introduced her friendly-seeming FNP/intern. She opened my file and waited for me to explain. I started explaining - I told her all about my experience, going to Dr. LiLi, from start to finish. I gave her a short version of the version I wrote in this piece. After she sat and listened (?) to my narrative, she responded awkwardly, stiffly, defensively. I was taken aback. I was totally surprised when she did not show any compassion or interest or understanding for what I was going through WHATSOEVER. She was cold and defensive. She, right off the bat, said, "Well, you said you were here for a second opinion, and I can't give you that. I do not give second opinions. Either you are my patient or you are not my patient." I was in shock. There was definitely a misunderstanding, but all I could pick up on was her meanness. I must have been in la la land to think she actually cared about ME and my experience. All she was doing while I was telling her my story was sitting there waiting to tell me that she would not help me. She was sitting there, annoyed, waiting to let me know she was annoyed.

And I was sitting there, telling her my story, assuming she was my PCP and that she cared about my well-being. Her response was the total opposite of caring. It was egotistical and terse. I felt extremely uncomfortable and embarrassed. I said, "Well, you are my PCP. I said "second opinion" on the phone but I really just meant a second opinion on the things that Dr. LiLi was telling me as my specialist. I don't understand why you can't say anything about the Leaky Gut Syndrome. I am not looking for you to tell me anything specific, I just wanted to share this information with you and see what you thought about it because you are my doctor." She turned even more on the defense. "Dr. Lili doesn't see anyone as a specialist, everyone she sees sees her as their primary care doctor, for everything." I said, "Well, I didn't know that. I only thought of her as my referred specialist." She kept looking at her young, kind FNP for validation, getting cockier every second. First she said to me, "I don't know anything about a Leaky Gut Syndrome so I can't say anything about it. I'm not going to give a second opinion. I didn't learn anything about a Leaky Gut Syndrome when I was in medical school." Then she looked at her FNP and said, "Have you ever heard of Leaky Gut Syndrome? Has Leaky Gut ever come up in your research?" The FNP nervously pulled out her Blackberry and scrolled down, in a pseudo-attempt to respond intelligently on the spot, and said, "Uh, no, nope." I responded, "I'm not saying there is or there isn't a Leaky Gut Syndrome. That's why I am here, because I am a patient and I don't know about all of this." By this time, the intensity of the situation was building. Elanah was crying loudly, and I was carrying her around as I burned up inside. I finally said to the proud Dr. Roto, "I don't know why you are responding so defensively about this. I don't understand why you are saying you can't help. I don't know why you are acting this way. I don't feel right about this, it makes me feel very uncomfortable." Then Elanah's screaming and my angry, confrontational nerves were too much. I was having trouble speaking because I felt crying coming on. I told Sandy to take the girls out of the office, and she did. Then I sat back on the table and tried to regain my composure. But it did not work, it only got worse from there (for a while, at least). I tried to explain to her that I had seen her before about the mastitis and the fatigue and the hormones. I tried to explain that I was not trying to leave her office to see Dr. LiLi. But she wasn't listening. She said, "Now, if you had made an appointment to ask me about your symptoms, then that would be a different story. But you made the appointment for a second opinion." I said, "But that was just part of the way I described it to the receptionist. I was always thinking of you as my PCP, I just was thinking of it as a second opinion about the prescribed treatment by LiLi. I just used that phrase because I didn't know how else to quickly convey it on the phone to your receptionist. Plus, I saw you first about these issues. You told me to see an OBGYN because you thought they were related to the breastfeeding, and you said you did not know a lot about breastfeeding issues." I wasn't getting anywhere except more and more upset. I finally said, "I really do not like the way you are acting toward me. I don't feel comfortable. I don't feel like you are here to help. I am just really not liking this interaction." She, treating me a bit like a patient in 1950s psych ward, said, "What is it that you don't like?" I couldn't respond intelligently at that point, I just wanted to start bawling. I said, to excuse myself, "I'm embarrassed that I am about to cry over this. I am probably feeling like crying partly because my period just came for the first time in two years today." Dr. Roto showed no true concern or ability to relate. Then I said, "I don't know how to describe what I didn't like about the way that you were just acting with me, but I just know I wish you would have treated me differently." Then she said, "What do you wish I had done?" I said, "I wish you had focused on the symptoms rather than on the fact that you don't give second opinions. I wish you had said, 'Let's focus on your symptoms, because they are the things I want to help you with.'" She said, still defensive, "Well, you didn't make the appointment for the symptoms. If you want to discuss the symptoms, that would be in another appointment when you would be seeing me as my patient." I said, still frustrated and nervous, "I don't understand why you cannot talk to me right now about my symptoms. Why can't we talk about them right now?" She said, "Well, you spent that whole time telling me all about the Leaky Gut Syndrome and all the allergies." I said, "I didn't realize you were in such a hurry to finish the appointment. I don't see why you can't just talk to me about the symptoms as part of this appointment." She said, "There is only a certain period of time allotted for an appointment." I said, "Well, then I guess I don't know what to say. I guess we can just make me another appointment to discuss the symptoms at another time." It was at that point that she seemed to lighten up a bit, as if the whole time all she wanted was to know I was going to make another appointment.

It was so weird, I felt like I was in a sweltering Twilight Zone. Then, as we started to communicate in a less defensive way, HER CELL PHONE RANG. She said, "Oh, it's my mom, I have to take this." Then she picked up the phone and said, "Hi, Mom, I'm with a patient, can I call you back? Oh. Four. Yeah. Bye" Then she said, laughing a bit, "She needed to know how many of ---?--- to order." (I can't recall what ? was.) Can you believe it? She answered the cell despite all the signs and despite the fact that I was sitting there, uncomfortable and emotional. WTF. All I wanted to do was to get OUT of the office. As we wrapped the appointment up, she gave me a pamphlet on Fiber and told me she wanted me to focus on getting back a balance (healthy food, exercise, sleep) before we do any more blood tests. She also said she would never test my progesterone or estrogen levels given the symptoms I described. And she said that she wouldn't do any allergy testing unless I had a reaction that was actually bothering me (remember, I didn't come to Dr. LiLi with allergy concerns, she just started with the allergy testing right off the bat because that is what she does with all of her patients). I was in agreement with all of the things Dr. Roto said, at the end of the appointment; but I was still reeling from the trauma of the majority of our interaction. I made an follow-up appointment with her, but I am planning to cancel it tomorrow morning. I don't want to go back into that environment (HER!) again. She did not have any genuine concern for me whatsoever. I can just imagine her rolling her eyes to her FNP and joking about the "Crazy Lady" after they left the room and snuck into the back office. Well, I am proud to be The Crazy Lady, if being The Crazy Lady means being direct and honest and confrontational. I am not good at it and it isn't easy for me and I cannot do it without looking really funny while I fight back tears, but at least I am willing to do it. So, although today sucked, I am really proud of myself for being upfront and direct. It ain't easy, but it's a skill I WANT to learn. I am letting go of my pride in order to find true confidence.