Favorite Patient Syndrome

The past few weeks, I’ve been saying goodbye to a lot of people. It’s been hard. It’s hard to let go. It’s hard to admit that my life is going to change. And it’s hard to keep track of all the things people want me to remember and to try.

It turns out that I have pretty good intuition, I just need to trust it more.

just special, or favorite?

I figured out pretty early on that Drs. Samuel & Leo had taken me on as a special patient, someone they were each invested in for their own reasons. It makes sense. They’re both research clinicians or physicians that mainly spend a lot of time doing research. (Not sure what the technical name for it is.) Anyhow, it makes sense that if they are successful in managing my case, they could turn it into a paper, and it would advance their career.

But there always seemed to more than that. Dr. Leo talked to the ravenous lion. And wrote letters to the lion’s colleagues. He even read/skimmed my dissertation proposal. Who does that?? That’s more than a research paper in the works. Plus, he spend hours of time on the phone with me, trying to understand not only my medical symptoms but also my life, my activities, my interests. Of course, all of this blends into how he thinks about my case & treatment for it. But it also helped me a lot because my health has become so much a part of my life and my friendships and even my career. It helped me conceptualize things and not to become robotic when it comes to medicine. It also meant that I was extremely comfortable talking to him about hard things that were happening in my life, which he probably ought to know about… like the fact that my sister was having severe depression and didn’t want anyone to know about it and I ended up being the one called upon to stage an intervention.

we will miss you; bee back soonI wrote earlier about Dr. Samuel and saying goodbye. My last visit with Dr. Leo was even more interesting. Our discussion was fairly complex. But he wound up saying, I can still by your physician from afar. We have email and the phone. Plus, you said before that you might drive up here anyways.

There’s an aspect where it’s not clear that I’ll have another gastroenterologist right away. There are parts of my illness that are clearly digestive related. But, in another sense, Dr. Leo pointed out that a rheumatologist would likely manage my case similarly to the one he would look at my case. (And I have a rheumatologist in mind in my hometown.)

Transitioning medical care is going to be interesting. Dr. Leo says that the key will be finding a Dr. Mark equivalent, someone who can oversee my case at large and who I’m comfortable working with. The rest will fall into place eventually.

But in the mean time, I think I might have a case of “favorite patient syndrome”. Not only are these doctors intellectually invested in my case, but over the past two years they have also become emotionally invested in me. They’ve come to know me, which means that they have been amazing physicians who have helped me to grow as a person and to learn to live well with my illness. It means that they have had unique insights into my conditions and have been able to guide me through some very difficult medication trials and diagnostic tests. It also means that it’s hard for all of us to let go. Drs. Leo & Samuel will always be big (positive) players in my time spent here. The fact that they care so much about me means that they like me as a person (despite my awful & challenging illness) and that they believe that things will turn around or that I won’t always be weighed down by this. (Who wants to follow a tragedy?) And it means they’re truly human. My sense of what made them good doctors for me was right. It just makes saying goodbye hard.

Until next time,

Abigail

Reflections with Dr. Samuel

I met Dr. Samuel earlier today to say goodbye & to touch base with him before I leave town.

We talked about my time as his patient & came away with several conclusions. (I’ll list them here so I don’t forget later!):

  • I started graduate school with pretty bad depression that sometimes took over my life. We got that under control within the first few months, and I’ve been doing pretty well since then.
  • I need to have someone continue to monitor the depression & continue prescribing the meds. Weekly talk therapy also seems called for, just because my life (with the chronic illness) is pretty tough.
  • Depression seems much more like a symptom than a root cause. I don’t necessarily need a psychiatrist to monitor the condition as the meds seem to have it under control, therapy should continue to help, and there are other things going on here.
  • One of the major blessings of having Dr. Samuel as my physician has been that any time someone brings up psychiatric origins of my illness, I can say that I have been evaluated by a psychiatrist over a period of time and he does not believe that to be the case. Dr. Samuel says that he would be willing to continue to be that person even from afar.

It’s a fine line to walk between making things up that aren’t true and using the truth to your advantage. Both Drs. Samuel & Mark have talked to me about this. It seems counterintuitive, but for a complex situation like mine, it’s important to consider how doctors think and how to best present my case to them. I think of it as giving a compelling description of a product rather than just trying to increase sales.

water flowing & sun shining
water flowing & sun shining
In other news, Dr. Samuel has been a pretty special doctor to me. He’s been the one who has always seen me as a strong & passionate person, someone who has accomplished a lot. A lot of people in my life go about looking for the silver lining in every situation, but Dr. Samuel has a different attitude. He see me primarily as a creative & determined young woman with a sense of humor. That’s something that endures, rain or shine, something that’s not tied to the circumstances. It’s a vision that not many people have shared with me, but one which has really changed my perception of myself. If I had to pick one person who changed my life while I’ve been here, it would be him. Without a doubt.

So I made something for him. Something that would capture the sunshine, the joy, that he always sees & brought to my life. I wrote a note on the back. I gave it to him at the end of the visit. Something to hang on his office wall. Or something cheery to put in his house. He was really surprised and said that it looked really pretty!!

the note
the note
I know that I’m not a visual person. It took me quite a while to figure out how to capture his attitude toward me as a patient and as a young adult. It made me really happy to make it. And to give it to him. Because sometimes words are just not enough.

Abigail

A Lot of Goodbyes

It’s official. I’m moving back to my hometown at the end of the month. I’m possibly going to live with my parents. I have a temporary job, so I do have a plan at least until I get a more permanent position.

Which means: it’s another season of goodbyes. Saying goodbye is hard. Maybe I’m overly sentimental. Maybe I place too much importance on human connections; (that’s what my sisters will tell you.) But not saying goodbye is even worse. It feels like leaving the operating room after the surgery but with the wounds still gaping open.

One reason hard thing about moving out of the Catholic Worker house was that it seems so impersonal. I never got to talk to my housemates about it. Their attitude was: We thought you were happy and cared for, but we guess you weren’t. And that was hard. I mailed goodbye cards to each of them. That helped some. But today I got a card from one of the girls. And that helped a lot. Dialogue really matters because relationships go both ways. Saying goodbye to a rock just isn’t the same. The note was a combination apology, goodbye, and well wishes. You know, our personalities were destined to combust at some point (if we had lived together longer.) We are just very different people. My letter to her was one of the hardest to write. So it meant a lot to me that she was the one who wrote back. Because that couldn’t have been easy for her either.

On a different note, I’ve started saying goodbye to my medical practitioners. With some of them, it’s been really professional and rather easy. My gynecologist? I spent probably less than half an hour with him my total time here. So when I told him that I was moving, he said, Oh. That’s too bad that grad school didn’t work out. But I guess you moved here for grad school so there’s no real reason to stay, right? Well, be sure to tell your next gynecologist ____ about your case. See? Easy peasy.

Some other practitioners? Not quite so simple. I spent a long time talking to Dr. Mark about leaving and transferring my care to my next location. He told me a lot about the way he understands my case, my personality, and my needs. We talked about short-term options, long-term options, strategies for finding new physicians, and overall goals. It wasn’t sad per se, but we definitely took a moment to recognize the ending of an era and the beginning of a new season.

And I’ve got a whole bunch more in the next two weeks!! For the girl who “doesn’t have any friends here”, there sure are a lot of people to say goodbye to!

Abigail

just a peek
just a peek

P.S. A preview of a farewell present for someone:

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

Lift Up Your Hands

from livingachaoticlife.com

I was playing around on the piano today and kept singing this one song over and over again. For some reason, I never realized that it was a Scripture song!!

Bless Jehovah now,
All you servants of Jehovah
Who stand by night in the house of Jehovah.
Lift up your hands in the sanctuary,
And bless Jehovah.
May Jehovah, who made heaven and earth,
Bless you from Zion.
Psalm 134

Abigail

Mumbo jumbo

I’m not a big fan of “New Agey mumbo jumbo”. I should probably define that.

New Agey mumbo jumbo: n (ˈˌn(j)u āje ˈməmbō ˈjəmbō): (1) nonsense related to or connected with an alternative approach to tradition (or Western) culture, primarily in the areas of spirituality, holism, mysticism, and environmentalism; (2) anything strange or foreign that seems to be of the hand waving nature and which Abigail deems rubbish.

So I was telling someone my recent sob story. More specifically that in the past week, I had four encounters with medical professionals, two job interviews, and one “move in 24 hours or else”. It seemed like a lot. Now, some people would just say, Yeah. That’s a lot. This person had a different reaction. He said,

Best thing to do, as always, is go with the flow. Visualize your successful handling all of the challenges you’re currently facing.

Somehow, I still don’t know what that means. I’m pretty sure that going with the flow would have meant staying in that house. And feeling guilty for not being grateful. And for feeling sick. And for not wanting the jobs I interviewed for. At least, that’s what it conjures up for me. It all feels like some New Agey mumbo jumbo.

Although I have to admit that I’ve heard some very traditional psychologists say similar things. And I haven’t listened to them either. I don’t think it’s just the fact that the person who made the above comment strikes me as a New Agey person. It just really doesn’t help. Going with the flow means being passive to me. And I’m not a visual person anyways. I can hear the music playing for my success story. But visualizing it? Not so much.

I think I like Dr. Samuel’s evaluation better. He said that I’m doing well juggling all the things considering that I feel super awful and want to be in bed all day. He also said that I have realistic expectations and am not setting myself up for failure. I’m aware of my limitations.

NAMJ or not, I think I’m filing this comment into the “oh” pile of comments. Maybe it’s useful for the person who said it. But otherwise, it seems like a smokescreen for me.

Just being honest,
Abigail

in a better place

So.. I moved out of the Catholic worker house completely. I am back in my apartment living with all my possessions in boxes, hoping that all of it will fit in the two cars that I’ll have to drive back to my hometown in a few weeks after I finish all my doctors’ appointments in this state!!

Moving out of the house was hard. And to be honest, I was really angry with how it went down. I guess I kind of spontaneously stopped living at the house. I’ll admit that it wasn’t logical; it was emotional. Still, after talking to Aaron and Timothy & Grace, I called my housemates and asked to talk about what was up and the fact that things weren’t working out. By the time we actually had a conversation two days later via text, I got a text that said (essentially), We’d love to have you here but since you’re not sleeping here any more, we have other people who want the space asap. You have 24 hours to move all your stuff. It made me mad. I mean, I guess I wasn’t living there any more. But seriously? We can’t talk about anything? It’s all my fault?

So, ummm, in between being very angry and extremely stressed out, I convinced a friend to help me with lifting boxes, and I talked Joseph into driving his van out to move my furniture. It was a stressful 24 hours, and I didn’t think that I’d have everything packed in time. None of those boxes are labeled; or, rather, I should say that they still have the labels from my move into the house and also from whoever used them before (and before that, too, for some of them!) But I didn’t put things back in the same box they came. So if it says “bathroom”, it’s probably either Bibles or dress clothes. Let’s hope I won’t need anything for a few weeks because I do NOT want to unpack and then pack very many boxes!!

I learned a lot of things from living in that house. A lot of things about myself. Some stuff about other people. One lesson I don’t think I’ll forget really easily: if you have a digestive health problem, you probably want to have a semi-private bathroom.* You can share it with other people. It doesn’t have to be a connecting bath. But a bathroom in the kitchen?? Across the entire house?? A nightmare waiting to happen. If people aren’t looking at you weird because “you were just in the bathroom 30 minutes ago”, you’re tripping over all the bikes in the hallway because you’re sleepily making your way to the bathroom in a very dark monster of a house and it’s the second time this night and you thought you had the geography embedded in your head already. You better believe that I’m looking for an apartment with a semi-private bathroom.

I was really, really angry. Especially since all the packing and the stress aggravated the breast inflammation/pain and woke up the costochondritis monster. The last thing I needed. I’ll be paying for it for a very long time. And really upset for not being heard. Do you know what helped? I wrote goodbye cards to every single person that lived in that house. I couldn’t really honestly write “thank you for your hospitality” cards. But I did get to know each of them a little and get to know what they’re each currently struggling with. So I wrote little notes that said I hope that you find peace in ____ and that God brightens the coming months for you. Something to that effect. Everyone got a different card, and I said something a little different to everyone. It gave me the closure I needed without me pretending that the whole experience was just fine and dandy. Because it wasn’t. (Some things like the bathroom situation weren’t exactly their fault. Other things probably were.) But I feel that I found a way to say goodbye and best wishes and to let them know that even though I needed to move out because it was best for me, it didn’t mean that I hated them or wanted them to be miserable. Because I really don’t.

The bottom line is, though, I’m in a better place. I am finished moving (for the moment). I still get to hang out with Timothy & Grace. Plus, I’m currently on a vacation from my real life and visiting a high school friend and her husband. They’ve got an awesome apartment. It’s really quiet. It has a semi-private bathroom that connects to the guest room. They have a piano. And, they live really close to some of my other friends. I’m happy.

Just the news for now from the person whose life never seems to have a dull moment,
Abigail

** Is this true for people who have permanent colostomies? Maybe there is an upside to that situation. Duncan, can you advise?