Dear Doctor (Revised)

Dear Dr. L,

I feel as though there are some things that need to be clarified that have been impairing the
effectiveness of our doctor-patient relationship. I am open to the fact that I may have misunderstood
things, and that you may have been working with thoughts and motivations completely unrealized by me. If that is the case, I apologize. However, I do not feel that maintaining my business with this
practice is in my best interest as a patient. In the past year that I have been a patient of yours,
my overall health and subsequent quality of life has decreased to such a point as to be laughable, if
one were not too busy crying and pitying me. Despite seeing me regularly through this time, the
records of my visits routinely note that "the patient has no difficulty performing daily activities",
despite my consistent and frequent protestations to the contrary.

My husband brought up a very poignant illustration of just how far my health has deteriorated. This
time last year I could almost hike to the top of Telegraph Pass, he said. Now, I'd be lucky to make
it out of the desert parking lot and up to the trail before having to turn back from pain, fatigue,
and general weakness. I have continually emphasized how regular, normal activities are becoming harder and harder for me to perform to the point that I am at the point of almost total debilitation, 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. I even brought in that "FMS Rating Scale" in an attempt to get you to understand the
severity of my pain and other symptoms.

The short period of time that I was using prescription pain killers in excess was a desperate attempt
to to control and somehow manage 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, such as the need for further pain control or for mobility assistance
devices like my walker. 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... as in, it happens on a regular basis.

Another concern of mine, beyond not being heard and/or dismissed is what would appear to me to be
false reports in my records. 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 troubles 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. Even my general practitioner, whom I saw recently, is alarmed that no further diagnostic action is being taken given the decline of my health and the elevated titers that sent me to your office in the first place.

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? It 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 and the autoimmune connection 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, which I am hard-pressed to say about the care I have been receiving here.

My husband made an extremely valuable point, though, which is 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 for no reason at all!), 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 you ought to.

If we do end up working together again in the future, I want you to take me seriously when I tell you
that I am seriously impaired and 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. I need you to
understand that I am worsening over time, not getting better, that I am alarmed by the rapidity and
severity of my symptom development, 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. This
is why I am seeking help elsewhere.