Sunday, August 29, 2010

wisdom and prayers - please

I tend to have my rage episodes at Tep.eyac after business hours, when I realize that I can't contact them (some celestial powers must have noticed one of their major oversights recently, though, because now, you can leave a message when they are not there - a revolutionary use of answering-machine technology), and I start to think about just why I'm so angry. It's like this: my cysts are getting worse. I'm having so much difficulty following up on a question (a simple question, actually - I just wanted a prescription, but I was willing to discuss the medical theory to persuade Dr. L/C to write it) I asked IN JUNE that I have not mentioned this to my doctor. They hurt more and more of the time now. And I need to do something about them, but trying to contact my doctor in order to do this is a waste of time.

So at my upcoming appointment, I have to make a decision between discussing the underlying problem (which will undermine any course of treatment I decide on anyway) of Tep.eyac's complete and inexcusable failure to communicate, or requesting the medicine that I need to give another shot at TTC (since, cysts aside, my cycles are suddenly looking so much better - I think I just need more progesterone in my luteal phase, and I would get more b/w to confirm this, but we know that Tep.eyac no longer provides me with b/w results) when my DH is next home, and then move to depo, which I think I should try for a few months to see if the cysts will recede, and then maybe HCG, which I will have to persuade Dr. L/C that she really could prescribe to me.

But keep in mind all these ideas require persuading her over some time (and she ignores my calls and emails); getting diagnostic tests to confirm that I have cysts and that the progesterone is helping and (later) whether the depo is working (and she withholds testing results from me); and if, God forbid, I should get pregnant, prescribing hormone support to maintain the pregnancy (see above about ignoring calls and emails). I think if I got a BFP at this point, I would go straight to the emergency room and threaten to shoot up the place unless they gave me a lifetime supply of every form of progesterone supplementation. I consider my RE to be an active threat to my health, to say nothing of that of a future child.

I note that my silver-bullet treatment option, a hysterectomy, carries with it some serious consequences beyond the obvious. Among these are that hysterectomy means hormone replacement. Which means, I believe, an increased risk of breast cancer. Which already runs in my family. How young do I want to die to avoid the endo pain and the continued destruction of my digestive system by the adhesions? Why am I faced with this decision instead of what I could do to treat the endo and maybe get pregnant?

So why don't I quit complaining and just get another doctor already? Well, you tell me how long you think it would take me to persuade a good doctor that my cysts have returned; now is not a good time for a third surgery, no matter how much better the new doctor thinks he is with endo than my last surgeon; the best treatment option barring surgery is depo provera, because I have taken lupron and am unwilling to do so again; I will not take clomid thereafter; and what I need after the depo works (if the depo works) is HCG injections. What do you suppose? Six months? Twelve? Possibly, I would never persuade anyone of this? Yeah, that's about what I thought. If I thought I could avoid getting caught, I would buy my own drugs bootleg. I think I'm better off just guessing what I should take, when, and how much (with the help of the trusty Dr. Google!) and dealing with the consequences than trusting any member of the medical profession.

So yeah, now I have to decide whether my next (and perhaps last) appointment is the time I should try to get the medicine I need, or find out why my doctor is not speaking to me.

So on Friday night, when I thought about how wrong all this was, that I should be in this position in addition to all the other crap infertility implies, I thought carefully about it and lost it in a focused way.

Just before 4PM (when Tep.eyac closes on Fridays!) I had left a message on the nurses' line pointing out that, since Tuesday when they were faxed a second copy of the results, they still had not called with the results of the thyroid testing I did five weeks previously - or with a message noting their failure to call, apologizing, and explaining. I'll tell the truth: the lack of these messages is what has been really poisoning the well for me. Once in a while, I cannot meet a deadline or schedule I promised a client. There's only one thing to do in that situation: you call or email and apologize. You tell them you haven't forgotten them. You say that you know their project is important and that you are working as fast as you can, but that for good reasons, you can't finish as soon as you had hoped and you will be in touch as soon as you are done. And you know what? That basically never fails. They're not mean people or deadline-obsessed; they just want to know that you give a da*&. And I would wait twice as long with Tep.eyac if there were any evidence that they thought that my treatment was their problem.

So the one I left just before 4 was not a nice message. At all. And I realized - oh, most of my messages are not nice messages! I'll be almost (not quite) polite on the phone live, but my messages are really, really angry. I start off by pointing out what I'm calling about and why it's important to me. Then I tell them how long they have not responded and when would have been an appropriate time to respond. Then I note that I know I'm angry. Then I tell them why - this is my health, and why don't they care? I manage to do all of this fairly succinctly. But I have been doing it for months.

I guess, in a way, it's no surprise that they don't talk to me. Except that actually there are two surprises. One, it's my doctor, not the nurses on whose voicemail I rant, who won't speak to me. And two, wouldn't you think they would drop me as a patient - and clean up their collective act? So far as I can see, they have done neither (possibly the former, definitely not the latter).

Maybe I'm the stapler guy in Office Space - they figure that if they treat me poorly enough, I'll just leave. Except for one thing. I didn't start out mean - I started complaining when they were already being irresponsible. And continued complaining when they continued to be irresponsible.

I have raved at the quality of care I have received from, among other places, Virginia Hospital Center and Washington Radiology Associates. I would have more blood drawn and more diagnostics done just so I could work with these people more. They are wonderful. So I am not incapable of recognizing good treatment. I'm just not seeing much of it at Tep.eyac.

Anyway, so how did I lose my cool late Friday evening? Well, I left another message on the nurses' line. I left my identifying information and asked Dr. Bruchalski, who heads Tep.eyac (but is not my treating physician), to call me as soon as he was able on Monday morning, noting that it was not a medical emergency but nevertheless very important to me.

I have a very bad temper that I can fairly attribute in substantial majority to infertility. Obviously the people who (fail to) treat me for infertility spontaneously draw more of my ire than an average provocation would. But I'm not sure that's unfair - if they don't know how hard it is to go through infertility, then they certainly ought to educate themselves, stat. And they make it harder because they are irresponsible with our care. (I know it's not just mine. Thank you, IF blogging...)

Anyway, left to my own devices, I can be very hostile. Confronted with a live person (or a live voice), I am more moderate. There are (usually) two sides to every story. I can't even imagine a good explanation in this case, but that doesn't mean there isn't a bad one. And if someone offered it to me, I would listen. I don't want to go off in a towering rage and be made a fool of when there's a good or even acceptable explanation. So I realized that the right thing for me to do was make sure I could talk to a person. I realize this with my husband - if he suggests something insane over email, and I call, I can gauge just how attached he is to this particular breed of insanity, and respond accordingly. If I respond over email, I go nuts pointing out the insanity in the insanity. I might have to, to head him off from some form of insanity. It's happened before; how do I know? A lot of fights start this way.

So I think I did the right thing (and I really want to have this discussion before my appointment, because my insurance does not cover diagnostic visits so I can discuss communication issues; I am supposed to use these opportunities to obtain medical treatment, and that is what I would like to do), but that means that the confrontation is coming up. I know I'm not the only person who's been at this crossroads (if not this one exactly). In some ways, I feel I'm striking a blow for every ignored, disrespected, and inadequately cared-for infertility patient. But at the same time, I just want some medicine so I don't get any sicker, and I don't know why it has to be this hard.

I would appreciate any suggestions anyone has, and, also, your prayers, that I don't misbehave too awfully, and that I keep an ear out for what I should really be saying.

Also, because I feel this needs to be said: I've noticed increasingly over time that there's not a lot of room for "overeducated" women in Catholic circles, whether that's blogging or elsewhere. I've seen one too many semi-secretive eyebrows raised IRL because of where one of my college friends is getting his graduate degree, or some "big word" that I used. I don't try to be a snot about any of those things, but I also don't lie or keep secrets about things that everyone else readily discusses with respect to themselves. I will not apologize for my education, such as it is, and shame on anyone (any woman, I should say - because that's what this is really about) whose mind that thought has crossed.

So I'll be clear: pride may be one of my failings, and I may be angry because I fail to take suffering with the proper humility, but I don't get angry with people on a socioeconomic basis (i.e., because they're "just nurses"), and when I've talked to the Tep.eyac nurses I've made 100% clear that I'm not angry with them and all I want is for them to pass the message along to their bosses, with whom I really am angry, and with good reason.

9 comments:

  1. This totally makes sense. 100%. And I too often fail in the pride department, but for the same reasons you alluded to (feeling the need to justify my frustration with how others are handling my medical care, etc.).

    I really don't have any suggestions for you, but I wish I did. I guess the best I can offer at this point are my prayers. I'm wondering if Our Lady Undoer of Knots can help you ungnarl this huge one...

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  2. Why are you still on the Tepeyac thing? Prayers, sure. Also, wisdom: Call Dr. Ace Lips.on. He is the internist I saw while I lived in DC and he can refer you to the specialist you need. Why stay with a Catholic practice? I think you're doing a disservice to yourself by staying with Tepeyac.

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  3. Oh, I really hope and pray that Dr. B calls you back and is nice and helpful. In my experience, he is entirely different from Dr. L/C. For starters, I never needed to argue my case for certain treatments with him like I did with her. He listened to everything I had to say and understood and respected that I was very educated about my symptoms and treatment options. He also was great about getting back to me, even calling me on weekends if he didn't get a chance to during the week. Now, on the downside, he did travel a lot for work and that would sometimes get in the way of getting a return call or test result.

    I honestly am appalled at the service they are giving you, and I hope Dr. B agrees if and when you get to talk to him.

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  4. I forgot to add one thing - did you know that their office has a patient ombudsman? I was in the waiting room once when I overheard the woman at the front desk talking to a patient about meeting with her, and then later I happened to notice the woman's office, which is near where you get blood drawn. I have no knowledge of her role, by any means, but it seems like she might solve problems like this and get you your test results at least. Just a thought.

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  5. I don't have much advice during your meeting except to keep the goal in mind. If you think these people can treat you adequately, try your hardest to be patient. You definitely catch more flies with honey than vinegar. It sounds like you're perfectly reasonable in person. It's harder over the phone, even leaving messages, but I'd recommend it.

    Once upon a time, back in the days when I worked in customer service (horrible job, I might add), I learned that people are more apt to bend over backwards to help you when you're patient with them. For those on the other end of the spectrum, we only did the absolute minimum we had to do for them, nothing more. That could be some of what you're experiencing now.

    By the way, I see nothing wrong with an education or using the big words. I personally hate to see the English language dumbed down to a fourth grade level so everyone can understand it. Be proud of your education. You earned it.

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  6. The office sounds like a nightmare. I'm praying for you. Ask our Bernadette for help. She seems to get great results and is just hanging around up there. Put her to work!

    I think you are hanging out with the wrong Catholics. My little group of Catholic friends loves smart girls and almost require an impressive vocabulary and a strident opinion to hang with us. We'll hang with anyone, but we'll adore you if you're smart.

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  7. Oh, pride, anger, and despair are some of my sins, too. That said, you aren't getting proper care. It's not right, and they need to do what they are supposed to do. I used to see a doc at a big OBGYN practice (which I came to call the bump barn). The doc was fine, as was one of the nurses, but most of the staff was AWFUL and incompetent and rude. So I feel your pain. It made things ten times worse.

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  8. "I consider my RE to be an active threat to my health, to say nothing of that of a future child."

    astonishingly bad customer service. wow.

    you already have the patience of a saint to put up with that nonsense.

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  9. I hope that Dr B calls you back! And you definitely need to contact the office ombudsman. I cannot believe that you have been treated this poorly for so long (I will never complain about the rude receptionist at my doc's office!).

    Please don't apologize for your amazing vocab! As an over-educated primary school teacher I love to exercise my brain while reading your posts!

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