Vindicated, yet Frustrated

I’ve been dealing with a swollen breast for the past 15 months. It’s been incredibly annoying. And it gets in the way of everything. When you have people at the grocery store pointing out that your clothing hangs weird, you know that things have gone too far.

The problem is I’ve seen a lot of health professionals about this. In between many, many episodes of the XXXXL gown, Dr. Mark and I tried to sort through what the condition could be and how to fix it. When I saw him last week, we lamented how I had already tried (1) steroids, (2) non-steroid anti-inflammatory drugs (NSAIDs), (3) topical NSAIDs, and (4) antibiotics. He didn’t have anything left to offer. And the problem is that no one besides him had ever taken me seriously.

First, there was Dr. Voluble who was absolutely no help whatsoever. (I still wished I had walked out on him.) Then I saw a bunch of other specialists, all to no avail. They told me that I was young and skinny and female. And that things fluctuated. Of course, I also got a lot of lectures about not drinking caffeine, but I don’t anyways because (1) I never have and (2) that’s bad for my sleep architecture. And I also got lectures about wearing sports bras, which seemed to only magnify the problem & are terribly impractical for someone who’s trying to be a professional. Mostly, I’d gotten thrown out of a lot of practices.

Of course, Drs. Leo & Samuel were sympathetic and made various suggestions, but it is WAY outside their scope of practice. Dr. Harold and Mr. Eric also made observations and kept track of how things were progressing. But all my doctor allies keep reiterating how much this needed to be brought under control, especially since I was having to buy a new wardrobe and was really self-conscious about going out. Plus, as Joseph pointed out, it was anything but normal, so it needed to be addressed. That’s a great consensus but what’s a girl to do?

So today, I finally saw a specialist in my new area. After 2.5 hours in her office (!!), she said that yes, there definitely is a lot of swelling on that one side. Unfortunately, given everything that I had already tried with Dr. Mark and given the fact that the imaging came out totally normal, she had nothing to offer me.

Finally, someone who deals with this didn’t just kick me out in the first five minutes. But still. She didn’t have any solutions for me. She just said to keep an eye on it and to come back in three months if it wasn’t better. She said that sometimes people with fibromyalgia get this kind of thing and that it takes forever to clear up. (At least that’s what she’s seen from her patients.)

I’m not sure what Dr. Mark is going to think. I kind of wish I was back in that area already, so we can rehash everything. I also just realized that the medication that I had been taking recently and had seemingly helped a lot is probably also responsible for the massive nausea that I’ve been feeling. So, it’s all back in one massive circle. And I still have to buy asymmetrical winter clothes.

So I’m vindicated, yet so very, very frustrated.

Abigail

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All in a Day’s Work

I’m back in my apartment from visiting friends, and it seems like my to-do list never ends. I’m applying for jobs. I’m cleaning the apartment/unpacking (shhh, only a little). I’m catching up on emails. I’m planning my move back to my hometown. I’m trying to catch up on sleep. I’m going to doctor’s appointments. (Four appointments in three days?? I need to stop doing that to myself!)

It looks like this except bigger… and we don’t have ceiling tiles.

Yesterday, I was trying to eat dinner. (I still have to do that too.) But then one of my friends called. So we talked for about an hour. While we were talking on noticed this huge stain on our living room ceiling. When Gretchen came home, I showed her and discovered that the stain is about twice as big as I thought. And there’s another stain in her bedroom. We’ve actually found a stain in her bedroom before.

Since I spend way more time staring at the ceiling (at least in comparison to other sane people), I suppose it was bound to happen that I would notice the ceiling leaks. Gretchen never has time to stare at the ceiling. Thank you chronic illness.

Do you think I should announce it to Gretchen like this??

The maintenance guy told me that unfortunately, our building roof is shot. All the wood is rotted up there. They’ve been patching it, and he’ll make sure that it’s patched above our unit. But other than that, the owners can’t be convinced to replace our roof until next year!

Add that to the list of reasons why staying in this “paradise” is no longer an option. I can’t wait to see the look on Gretchen’s face when she realizes that the sky is falling. Literally. Ok, maybe I’m being dramatic. A little. Or maybe not.

Abigail

Burnout

I think I’m really burned out. I’ve noticed that I’ve been extremely mopey lately. And I’ve started swearing a lot. Which is extremely unusual. Usually I’m allergic to swearing.

Anyhow, I’ve determined that while living with Aaron and Timothy & Grace’s friends is quite an opportunity, I think it’s stressing me out more than it’s helping. I don’t really know the people that I live with. The community is also incredibly unpredictable. Most of the time I’m one of the only people home, but sometimes (and with almost no notice) someone(s) will just show up and be there to stay. Last night, after a terrible, terrible day, I came home to just rest and chill and try to forget everything that happened. But, lo and behold, a bunch of people showed up at the house for dinner. Which I’m all about dinner and fellowship and community. But really? When I wandered out (in my pajamas) to figure out why there was so much noise, I didn’t expect 20 people in my living room and a toddler running around the whole house. As the night wore on, it just got to be too much.

I love the ministry. I love what they’re doing here. But it’s times like these that I really miss Timothy & Grace (because they don’t come to these impromptu shin-digs. They retreat to the serenity of their house.)

I’ve come to the conclusion that the whole point of being here is to rest and recover. It’s hard to heal and think if I’m always stressed out and can’t hear the sound of my own voice.

I think, for my own sanity and for the sanity of those around me, I’m moving on. I don’t have a job yet. I don’t have a place to live. We still have no idea what is wrong with this most recent (and annoying) source of inflammation. But part of figuring that out will have to include transitioning out of this community, at least living here. I think part of my heart will always be here.

It was an interesting experiment. I’m really glad I did it. I’ll be here for a little while longer (and probably longer than I’ve been here already.) But I’m not going to linger here forever trying to make this work. Because all of this directly counters why I’m here in the first place. And, since I’m doing this for me, taking care of me entails doing something else.

I talked to Aaron about it already. He encouraged me to pray about it all. He also promised to pray for me. But he urged me to start looking into options to move back to where I was before I started graduate school. And we’ll touch base in a week to reassess.

Praying for clarity and for all the pieces to fall into place. Praying for strength for the next few weeks. Praying about all the conversations that will occur in the next week or so.

My life never ceases to amaze me.

Abigail

Amorphous Blob v. Ravenous Lion

I think the ravenous lion just nullified my entire field of research. I’m not sure what I’m supposed to do.

When I point out that he contradicts himself, he says, Oh, I’ll have to think of something else to say. Seriously. He actually said that.

Sigh. I think this era is over. I can’t sleep at night any more. And I just start crying whenever I think about the amorphous blob, which (by the way) is not so amorphous any more.

Pray for me… for this transition, for the conversations that follow. It’s been a long road.

Abigail

the Ravenous Lion has spoken

and I’m think I’m still too upset/stressed/mad/infuriated to trust myself to describe my proposal defense in words. So let me share with you some images:

Grad School the Board Game
I landed on “meet with thesis committee”
Clarity and Depth
well, someone (or maybe someones) actually said the “lacked clarity and depth” part…. unfortunately, their response did the same

To add insult to injury, my thesis title was “so terrible” that one committee member wasn’t sure he could even read the proposal.

your thesis title
Unless you follow this advice, you will be crushed. No one will read your dissertation proposal… or buy your book down the road (which you’re already marketing, right?) That’s what happens when your title is in English, has only 10 words, and includes no subtitle.
I think I might need Jen after all

The verdict: I have six weeks to resubmit and defend again.
My plan of action? Get somebody to actually teach me what it is I’m supposed to be doing. Fire the ravenous lion and hire an adviser. Potentially redefend (instead of dropping out of grad school in frustration.)

Yup, the tension in my life only increases.

Abigail

How I feel…

This is how I feel:

Why? Because my fellowship didn’t come through.

Why? As I told Aaron, that would assume that there was logic to it.

I’m trying to keep studying and resting and healing without exploding over everyone. I’m very attached to the promise of a reduced course load that they gave me. Instead, I feel like this:

There’s no telling when this will be resolved. Or how many people will get involved. Or how much yelling on my part it will require.

Since I may have to take legal action, I’ll spare you the details.

wise & applicable

But this is how I really want to feel right now:

so much better, right?

With a sigh,
Abigail

Ramblings…

One of the awesome things about writing a blog is that I can articulate the crazy thoughts that go through my head. This is one of those posts.

Crazy Carnival Lights

My graduate program has become a very hostile environment for me. I hate going to campus, and I especially hate running into people from my department. As much as people have tried to talk me out of it, I dread every day that finds me on that campus. Needless to say, there are many days when I’m simply not on campus. It doesn’t help that the days I do show up reinforce the aforementioned observation. Case in point:

Yesterday I showed up to campus. I got there just before 5:00, so I stopped by my adviser’s office to say hello. The whole experience was bizarre, but this was the clincher: he said (and I quote)

I’ve told you before and I’m telling you again. I don’t think you have the capacity to do the Ph.D. program. I’ve told you, I’ve told your doctor, I’ll tell anyone who asks. I’m very concerned.

So I asked, Can you elaborate. Is there something specific that you’re concerned about? His response:

Yes. After our meetings this summer, I’m concerned that sometimes you’re so exhausted that you don’t obtain the full benefit of the reading. I also don’t think that you are capable of performing the rigors necessary for dissertation research. I mean, you have to travel to an archive. You have to work from open to close. You have to spend the night in a hotel. You have to wake up the next day and do it all over again. Then you have to drive to the next city to repeat. You can’t do that, and it will be very expensive for you to stretch out that research over many days.

Note that nowhere in this conversation is there any discussion of academic performance. Nowhere is there any flexibility. This is the logic: If I was you, I would not have been able to complete my dissertation the way that I completed my dissertation. Therefore, you cannot complete a dissertation.

I try to reason with this ravenous lion. I completed an extremely rigorous program before I came to this university; I was able to do M.A. level research by paying people to go photograph archival material and by using creative approaches to work around limitations. (That is part of life with a disability after all.) Furthermore, there are many ways to approach a dissertation. One doesn’t always have to use materials in obscure, far away locations. I understand that we work in the field of history, but at some point, you have to realize that this is the 21st century and there are different ways of approaching research. Does he accept this? Of course not. He points out that there are people who use published sources or even electronic sources but those are not types of research that he’s familiar with (nor is he willing to become familiar with them.) It has to be done a specific way, and he knows that given my circumstances, it can’t be done. Period.

I also find the logic faulty. This is how I see it:
A –> B If it rained yesterday, it will rain today.
A It rained yesterday.
——————————————————-
W My brother will not attend my wedding.
For purposes of this argument, I will accept the logic that raining yesterday necessarily means that it will rain today. I even accept the observation that it rained yesterday. But it’s unclear to me how this leads to the conclusion that my brother will not attend my wedding. Is his attendance predicated on sunny weather? Is his attendance predicated on the trajectory of the weather? Or is it completely unrelated? Is there reason, for example, that my brother will not attend my wedding because I don’t have a brother. I find it troubling that after someone observes that typically Americans put milk in their cereal and that I’m on a dairy-free diet, they conclude that I don’t eat breakfast. Just because you aren’t creative enough to find a solution to the problem doesn’t mean that (a) a solution doesn’t exist or that (b) the conflict observed is the most important factor. I might use milk-substitutes, or I might not eat breakfast because I experience overwhelming nausea. So are we even arguing about something relevant? What happened to the spirit of learning and of creativity?

Another problem. I only stopped by my adviser’s office to say hello, but he had me sit down (because me standing made him uncomfortable) and then he closed the door for this serious conversation. This made me late for my actual 5:00 pm appointment even though I told him that I didn’t have time to stay. Oh well. Leave his office (finally!) and walk to the office next door where I have my next appointment. After looking in the hall for the other student who is supposed to be at this meeting, I knock on the professor’s door and say, I think we had an appointment at 5. She says, Yes. It was at 5. When you schedule an appointment at 5, you should show up at 5, not at 5 to 6. (Hmmm, it’s 5:10 at the latest.) I didn’t have time to get coffee before class (at 5:30) because I’ve been sitting in my office waiting for you to come. I respond, I’m very sorry to keep you waiting. I realize that you don’t have time right now, so I will leave.

Does she accept that? Does she go to get her coffee? No. She refuses to let me leave, asking me how I am going to make up for the fact that I didn’t have a meeting with her. (Ummm, I’ll figure something out.) She gives me a 5 minute lecture on how rude it is to make someone wait because you’re late to an appointment, and how juvenile my behavior is. Finally, she discusses a few things about the actual topic at hand, but closes with another reprimand for being late and disrespectful.

Of course, in the actual class, she brings this matter to the attention of the whole class. Then, during break, when I am talking in the hallway with the student who was supposed to meet me, he apologized for never showing up, saying that he had it written in his calendar for the next day! We discussed our presentation for the next week, and he assured me that he would personally apologize to the teacher for not showing to the meeting because part of the reason I was late was that I would have waited a minimum of five minutes for him to show up. Did he get a chance to do that? Did the professor accept his apology? No. She saw us talking in the hallway and interrupted our conversation (in the middle of a sentence no less) to reprimand us yet again for the atrocity of leaving her waiting in her office, wasting her valuable time, and making it so that she was not able to get coffee before class. When the other student apologized for not being there and said that he was at least partially responsible for what happened, she said, No. This is 100% Abigail’s fault as well. She shouldn’t have been next door during our appointed meeting time. She should have at least told me that that was what she was going to do. She is incredibly rude. After she went on and on about our unacceptable behavior, she said, I’ve decided. You need to be in my office on Monday. Then we can have further discussion. I just said, No. I cannot be there. I’m sorry. I have an appointment with Dr. Leo on Monday. Then I have a directed readings class. Then I have to attend the class I grade. I don’t have time on Monday, and frankly, I don’t want to have to deal with her any more. It’s not clear whether or not the meeting will be about our presentation, will focus on our terrible behavior, or will be a rant on what other students did to her. And frankly, I don’t care. I have bigger things to worry about. After some discussion, we agreed to communicate via email.

In summary, it was one of the worst 15 minute episodes of my life. First, to be told that my adviser that no matter what, I am a failure. Then, to be yelled at by another faculty member for being late to an appointment. Apparently having chronic fatigue means that no matter what you do, what you are able to accomplish, or anything else, you are a menace to society who should not be allowed full citizenship.

People tell me that I need to do a better job of standing up for myself. But I’m not so sure about that. There are situations when I get what I want because I demand it. I want something, and it has to be done my way at my time. I was able to tell Dr. Voluble that the off-topic conversation was over… after thirty minutes of course. I have stared down receptionists and appointment coordinators to get my way and see the precise type of medical practitioner that I wanted. But it’s really hard for me to fly into the face of authority, to talk back and say, Now you just wasted five minutes of my time, and I’m insulted. And frankly, is this really my fault anyways? It’s not fair for my adviser to arbitrarily decide that a personal limitation of mine disqualifies me from trying to earn a Ph.D. He’s not qualified to make that assessment unless it relates to intellectual or academic performance. And even when I don’t have the full understanding of the reading, I’m still performing on par with my peers (who have the opportunity to work toward a Ph.D.) And, yes, I was late, and I wish I wasn’t. I even apologized for it numerous times and was willing to accept the consequences of not having that meeting. But does it merit automatic disqualification of success in the class itself? Does that seem to be overkill?

I need some help here. I hate to become a person who always thinks she’s right and everything she does is justified. But at the same time, some of this does not seem fair. How should I approach this? And what should I think?

Perplexed,
Abigail

Signs of a Terrible Doctor

…I know I said that I would be back in a week, but something happened today and I need to write about it. Writing is cathartic for me. Hopefully writing about it will make me feel better.


I saw a specialist this afternoon to follow up with the isn’t-cancer-but-is-still-lingering condition. The visit was terrible. I kept thinking, I definitely didn’t pay for your opinion on these issues & why are you only spending 2 minutes on the condition that I consulted you for??? Chronic patients need someone more than an expert; they need someone to recognize that their condition might be complicated and they may need extra assurance to follow through with a new treatment direction. They need someone who listens to them and cares for them on a human level; otherwise, how do we know that you’ll treat us well as scientific subjects?

Dr. Voluble met all these criteria for being a terrible doctor; (my responses are in italics):

1) Diagnoses you before he talks to you or examines you by skimming through your file

I call doctors like this scientific. Maybe a better descriptor would be robotic. They stereotype your case into one of three possibilities; (interesting how by virtue of walking in the door, you have one of three conditions!) If I wanted a generic evaluation like this, my physician would have ordered a phone consult.

2) Doesn’t actually look at the notes in your file for why you were referred & doesn’t take notes at all when talking to you, especially for a thirty minute conversation

One of my pet peeves is when doctors don’t look at my medical chart and then proceed to ask me questions about things that are clearly stated in my chart. I understand that you want me to tell my story in my own words, but don’t walk in and then ask me if I’ve ever seen other physicians for this condition. The answer is: Yes and WHY haven’t you looked at my chart??? Plus, you clearly don’t value my thoughts enough to actually be noting down anything I’m saying, so are you really listening or did you just walk in to dump your pre-ordained diagnosis on me since insurance won’t pay for this consultation unless you actually talk to me?

3) Tells you when he enters the room that while he knows that you came in to discuss something in his speciality, he wants to set that aside for now and talk about other things because he thinks those are more important

This is a terrible, terrible sign. It would be like taking your dog to the vet and the vet giving you a thirty minute discussion on topiary. Ummmm, I don’t really care if the way my backyard is laid out is stressing out my dog. I came here to see about the thorn in his foot!! And if my topiary is really a problem, I should be talking to a gardner about making changes to it. Can you please pretend to take me seriously? I’m consulting you about something in your field of expertise because it’s important to me to understand what’s going on there, and another physician believes that your expertise would be beneficial.

4) admits that he’s not a psychiatrist (or other type of specialist) but claims that in my case, he knows more than they do

Another terrible, terrible sign, especially since I have something that is not straightforward, which he would know if he actually looked at my chart!

5) mentions how many years he’s been in practice & how many patients he’s treated

If you have to revert your personal history in order to establish credibility, something is wrong. Your credibility should be based on logic of how you came to this conclusion and the signs and symptoms present in the case. If you’ve treated a million dogs for schizophrenia, it doesn’t make you a better vet for removing the thorn in his foot!! He’s not schizophrenic and definitely not the other million dogs!!

6) when you mention that you have other physicians that he may want to consult with, he replies that actually he doesn’t need to consult with him because he knows that he’s right

Another terrible, terrible sign. If the only reason that you’re running a diagnostic test is to prove to me that you’re right (especially about a pre-ordained diagnosis), your credibility is going way down. Experience tells me that if the diagnostic test comes back negative, you’re still going to want to treat me for what you think I have because “tests aren’t really that accurate”. This is not the proper use of science in medicine; science means that you follow a protocol that makes sense in this case, not a protocol that is one of the three options you always exercise.

7) corrects you when you try to explain your medical history and your explanation doesn’t fit his pre-ordained diagnosis

Something about this tells me that you’re not listening to me and you don’t actually respect me enough to accept the possibility that there may be something you’ve overlooked.

8) spends a total of two minutes on the physical exam and the actual issue you came in for and spends another thirty minutes talking about things that are either outside his medical speciality or not even related to medicine!!

I left this visit completely uninformed about the issue that I came to consult with this specialist about. I know it’s not cancer, but I already knew that before. I still don’t know if there’s something abnormal because you didn’t spend enough time to determine that and you didn’t even look at my face during your two minute exam. If I was grading you, you would get a 0 because you failed to meet the demands of the assignment.

9) insults his patient’s intelligence by repeating everything over and over again and refusing to address legitimate concerns of the patient

Just because I have a chronic illness doesn’t mean that I have the intelligence of a twelve year old. Neither does the fact that I might look like I’m twelve. I’m in graduate school and provided you with the majority of the information that you’re using to make this diagnosis (since you failed to examine my chart.) Plus, I was referred to you by another M.D. for something that he felt was serious enough to merit a consultation with a specialist. If you dismiss the reason that I came to see you, you are effectively dismissing his judgment. Since he’s spent a lot more time with me and I have an established relationship with him, this also diminishes your own credibility.

10) spends so much time off-topic and away from medical issues that the patient has to politely but firmly nudge him, Can we not talk about this any more?

There are no words…

11) knocks on the door after he already opens it even though the whole reason he left was because proper medical protocol requires a female present for the actual exam

You’ve established that you think you rule the world. You don’t have to demonstrate it again.

12) is sure that his pre-ordained diagnosis will totally turn your life around and knows that only a great mind like his would have seen this

I’m sorry, but even if you’re right, I’m electing for treatment with someone who respects me enough to listen to my concerns, thinks about how this might fit into my existing treatment, and honors my intelligence and decisions. And, so far, you haven’t done a very good job at establishing credibility; I just know that you think you’re really something.


This visit reminds me again and again how blessed I am to have physicians like Drs. Leo, Mark, & Samuel in my life. I know that I can bring up the issue that Dr. Voluble flagged to any one of them, and we can discuss whether or not it’s something that needs to be investigated. They will take the time to listen to me and consider this issue because I brought it up and asked for their help. If it’s not something important, they’ll tell me so and tell me why. Then we can move on. And if it’s something that needs to be addressed by someone who specializes in that issue, they’ll refer me to a colleague. They won’t spend time criticizing Dr. Voluble or dismissing my feelings regarding this consultation. They won’t tell me that they’re not interested in an issue that I bring to them. And something tells me that this makes them better doctors. It certainly makes me feel less stressed about managing my own very complicated medical journey.

Abigail