Dear Dr. L,

I want to take this time to clarify a few things that I feel are impairing the effectiveness of our doctor-patient relationship. I am completely open to the possibility that I may be misconstruing events and that you intended to convey a totally different sense of things. I would like to check if this is the case so that we can better work together to identify and manage my illnesses.

First off, you should know that I read the records I received to pass on to Dr. M, and I have them in my possession since the doctor was unable to receive me as a patient. This means that any references I make to my records are direct quotes, and not subjective memories or impressions.

I admit that I was greatly distraught upon review of my records, as I feel that there have been some serious oversights and miscommunications. (Also, I had allowed myself to raise my hopes in regards to seeing a pain specialist, so being denied that opportunity-- again-- really threw me into a state of heightened emotion.) In the "Rheumatologic Exam" section of each appointment, results for various examinations are listed as though the exams were performed at every appointment when this has not been the case. I recall only 3 appointments at most in the entire year that I have been seeing you that I have been touched or manipulated in some way for an exam; certainly not at every single appointment. It troublese me that at every appointment my joint and flexor tendon examinations have results reading "Normal exam", yet I was never examined. The trigger point examination notes diffuse trigger points throughout, but I am not re-examined for this (though it's true). Also, I noticed on my chart that I have an assessment of "fatigue with polyarthritis". Why has polyarthritis never been mentioned to me, and why are we not addressing it if it has been determined that this is an illness I'm dealing with? You have seen my health declining rapidly over the past year, yet it would appear that an apparent lead to managing my symptoms is being ignored. I need an explanation on this.

This brings me to my next, most sensitive, point. It is very clear to anyone in even basic consistent contact with me that my health has declined noticeably and rapidly within the past year. I know that we are taking steps to arrest this downward slide, yet I do not feel that I am being taken seriously. Perhaps the blame lies with me in not being clear enough about the severity, frequency, and variety of my symptoms, but the sense I get is that I'm being dismissed. It's like if I come in and say, "Oh, my sickness is at a level 7. It's debilitating, it's ruining my life," you take it as my sickness is really only at a level 4 and I'm not really that impaired. Remember the "FMS rating scale" that I brought in to show you how low my level of functioning was? I was trying to get you to understand how low my basic level of functioning had fallen, yet in that appointment's notes and almost every one following (with the exception of the last appt) it is noted that the "patient has no difficulties performing daily activities" despite my repeated testimonies to the contrary. I have tried to impress on you the extreme levels of pain that I am in by the hour, the minute, the day. I have been open about my excessive use of pain killers in the past, which was a desperate attempt to control and somehow evade this pain; to get back to a somewhat normal standard of living. I have, I thought, been very clear about the profuse, intense, and increasing amount of symptoms that I have to deal with, and the disability that has come as a result. I feel that not only is my sickness not being taken seriously enough, but I feel that the measures I am taking to cope are being dismissed as exaggerative.

A perfect example is my walker, the "Bling Chariot". (Or, as my brother calls it, "Walker, Texas Ranger". Or, as the lab techs call it, "Luke Skywalker".) I am not sure how you were unaware of my having it until now, as I've brought it to several appointments with me, and I have had it since last December. I bought it for the plane trip back to W to visit my folks. I knew that I did not have the physical endurance to both walk through the terminals and carry my bags without becoming so ill as to be rendered immobile. The cold of a W winter, and the fact that I was not yet on pain killers, forced me to use it for mobility's sake while I was there, as I could not walk normally due to pain. (This was back when the pain was localized mostly in my lower half.) When I got back home, I didn't use it for a while, feeling that I did not need it for basic mobility. After a time, I began using it when I knew that I would be standing or walking for a long period of time, and the pain from that would make moving very difficult. It was also handy for the fatigue that accompanied long periods of walking or standing. As time went on, my pain increased and my endurance decreased, and I began to use the walker more and more. My husband got me the walking stick that I think you remember so that I would not have to cart the walker around and endure the stigma of a young woman with a walker (no matter now neatly decorated), but that way I still had something to help with mobility issues due to pain and fatigue.

That worked well, until recently the pain in my hands became so great that using the stick is out of the question, and I have come to rely solely on the walker as my means of mobility aid. I explained to you at the last appointment that I use the walker to help with balance, to help me walk when pain affects my mobility, and to provide a resting place when fatigue/nausea/lightheadedness overwhelm me, which is frequently. My endurance is at the lowest it's been, and a simple grocery shopping trip of half an hour requires several rests, sometimes ending in my husband or a friend wheeling me around on the walker like it's a wheelchair because I am too sick or in too much pain to walk myself. That happens more often than I'd care for it to. I explained this to you, and in the notes for that appointment you wrote, "The patient requires walker for mobility states she has had this since 12/12, but this is the first that I have known about. Uses it for fatigue, pain, dizziness, tremors." I see that you listened to me, which is awesome, but I got the sense from the appointment (and from the notes, though I was emotional at the time of reading the notes and have since decided that I was putting the wrong meaning into that part) that you think I'm exaggerating. As you put it, you consider it to be "a crutch". (In reality, though, that's what it is, right? Because a crutch is a tool to help you be mobile when you would otherwise be immobile, so... in that sense, it is a crutch.) In short, I feel demeaned, not taken seriously.

I feel that way with my treatment as a whole, frankly. It appears to me as though you are taking me seriously, so you are not seriously pursuing the root issues of what is causing my pain and distress. I do feel a little more as though you appreciate what I'm telling you with the hand x-ray and ultrasound that was ordered, but this seems to me to be the first decisive action towards further exploration of my condition in a long while. I understand that the diagnostic process takes time, especially with the types of diseases that often mimic one another, but surely there must be a more aggressive manner to pursue diagnoses? I feel that the symptoms that I bring up are casually acknowledged and then dismissed. You sprang into action when I mentioned hand pain, but what about the insane spinal pain that I've been telling you about for several visits? That concerns me, but it is not even mentioned in the notes. The fact that I have recurrent fevers and sores of the scalp, mouth, and nose seem to be of little to no consequence to you. That you note that I "insist" that certain symptoms are related to autoimmune diseases makes me feel like I'm seen as some patient who decided she had something she found off of WebMD, not to be taken seriously. My general practitioner affirmed my inherent understanding of my body right away, and while she corrected me on some points, I still felt heard, understood, and that she was taking action on my behalf and had my well-being in mind.

I want you to take me seriously when I tell you that I am seriously impaired, that I live with devastating pain on a daily basis that is not adequately controlled by pain medication or the alternate coping methods I employ, that I am worsening over time, that I am alarmed by the rapidity and severity of my symptom development and I worry that I will be completely disabled in the near future, and that my life has literally been ruined by whatever is going on with me. I want you to understand that while it's easy for you to listen to my litany of problems and then wave me out the door, I have to live with every single one of them, every moment of every day. Nothing we have tried so far has made any of it go away. I want you to realize, truly realize, that I am becoming increasingly desperate and unsatisfied with my quality of life, and that depression is becoming a major problem for me.

While discussing this situation with my husband, he assured me that I am not a pansy, and that I'm not an exaggerator. If I say it hurts, that's because it hurts. I'm not the type to stub my toe or come down with a headache and need the rest of the day off. He reminded me that I am more in tune with my body than the average person, and I have a good grasp on what I need to do to make life work for me as well as possible. Regarding the walker, he stated that I know when and if I need the walker, and I use it. I don't rely on it unnecessarily. I trust his assessment of the situation, as he sees it with more clarity and less emotional involvement than I do, and he also sees the impact of my sickness from a different vantage point. He knows whether I actually need the walker or not. He sees me resting for an hour or more after doing a sinkful of dishes. He sees me curled up on the couch, day after day, because I am too overwhelmed with pain, nausea, and fatigue to be upright and mobile. He also played devil's advocate and made an extremely salient point, which will be my last.

My husband pointed out that when you see me, I am at my "best". I'm out and about, I'm dressed, I've got my makeup on, and I'm running on adrenaline to make it through being out of the house. You see me when I'm "okay". I'm sitting up, smiling, talking, cracking jokes... it seems that I'm doing okay. But you don't see the aftermath. You don't get to see that I barely make the drive back home and then crash on the couch for the rest of the day. You don't get to see the pain spike because I used my energy reserves for the day at that one appointment, or the fever that comes with overexertion, or the nausea and dizziness that keep me prone even if I weren't so bone-tired and wracked with pain. You don't see any of that. You see a relatively happy, healthy looking girl who wanders in with a walker. So I see why you might not be taking me as seriously as I wish that you would.

This isn't an ultimatum. This is a cry for help. I asked you in the past to help me, please help me, and you said that you would. So please... help me. I want my life back. I don't want to live this way. I hate it. I want to be a real person again, with a social life and my old hobbies and the ability to contribute to my household's budget. I want to find out what's going on, what's really going on, why I'm so sick, so I can do everything in my power to control it.

Please, correct me if I have gotten the wrong impression anywhere. I would like nothing more than for our working relationship to be strong and productive, and I apologize if I offended you in any way.



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