you know you have chronic fatigue when…

2 of your 6 dresser drawers are packed full of “loungewear”.

So I’m finally unpacking my stuff at my parents’ house. I think I’m going to stay here for a while, although I’m trying to redecorate the room so it looks totally different from how it felt before. Maybe that will help with some of the memories.

Anyhow, I have a six drawer dresser, and in unpacking, I found that my clothes fall equally into three categories: (1) business casual, (2) loungewear, and (3) tshirts, sweaters/jackets, and dresses. So ummmm, yeah. It’s either work clothes or sick clothes or other. I had no idea how many pajamas or “lounge” clothes I had collected in the last two years, but hey, that’s a small price of having chronic fatigue syndrome, right?

Abigail

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5000 years old

… I have a million posts in my head, but the truth is that I feel like a 5000 year old man. That doesn’t give me very much time for writing (but a lot of time for thinking and resting.)

I will return at some point, hopefully soon!

Abigail

CPBC: Patient by Patient by Emily Transue

First review for Chronic Patient Book Club is finally here. ::drumroll::

Emily R. Transue, M.D. Patient by Patient: Lessons in Love, Loss, Hope, and Healing from a Doctor’s Perspective. New York: St. Martin’s Griffin, 2008. R154.T673 A3 2008. 610.69’6092

Emily Transue documents her first years as a doctor of internal medicine, living in Seattle and flying back frequently to visit her aging grandparents in New Jersey. She’s honest about the difficulties she faces with the business of being a doctor (coding is a constant nightmare) and the troubles she faces as a daughter and a granddaughter. Her book gives a window into the dual world of a maturing doctor and a maturing adult, considering marriage, the needs of people she barely knows, and the finality of death.

Her first chapter includes that insight we only gain in retrospect:

I had finished the hard years of residency, the hundred-hour weeks and thirty-six hour shifts, the drama of the hospital and the emergency room. I had seen a lot of people die or nearly die in those years, and I thought I knew plenty about grief and loss and healing. I little imagined how much more and how differently I would learn in the coming years. Much of this would come from the patients I would care for, not just in the episodic crises of the hospital but in the slower, richer arc of sickness and health that a primary care doctor sees. In parallel, my first years in practice would be tumultuous ones for the people in the world I loved most, and I would see more than I ever had of medicine from the other side. (5)

It’s interesting as a chronic patient to read something from a physician’s perspective. I always hope to know a little bit more about how doctors think so that I can plan the appropriate strategy for our encounters. But Transue does much more than that. She shows us that doctors know that patients are vulnerable; for a doctor to help, to sympathize, requires as much that the patient come out from behind their hiding place as for a doctor to be willing to listen. For example, she recounts the story of Ellie, an older woman recently widowed, crying and saying, “I just want to die.” Dr. Transue wonders how she’s supposed to treat grief and decides that talking could be as much a comfort as any. When she leaves, she asks that question that so many of us think is empty: “Is there anything else I can do for you?” Ellie’s response impressed me. She asked for a watch because she never knew what time it was. And that became an opening for so much more.

There’s the story that she tells about the Catholic grandmother who insisted about learning all about Transue’s boyfriend and made her promise that they would wait at least another three years before they got married. And another one about some guys who were sharing an id and the confusion that created when one of them turned out to have tuberculosis. Mostly, it’s a different perspective, and it’s helpful to be able to laugh a little bit about the ridiculousness that comes along with any profession, those things that fall by the wayside while we’re focused on the life-threatening stuff.

Overall: Not a profound book, but very true-to-life and funny. Gives a genuine glimpse into a young woman’s life, her journeys as a primary care physician, a daughter, a granddaughter, and a girlfriend.

Reflections with Aaron

I’m trying to write down all my thoughts from moving and transitioning. I realize that there’s some details that I haven’t had a chance to blog about. Not sure that anyone’s following, but I want to write them down so I’ll remember later.


I met with Aaron one last time before I moved away. It was an interesting time of reflection for both of us. We first met about twelve months before, and we talked about how much our lives have changed in the last year and a half. We’ve both made changes that we never dreamed we would ever make, and we’ve also both been faced with decisions that we never imagined we’d have to deal with. (We just felt sad for other people who had to experience them & patted ourselves on the back that they didn’t happen to us.)

Aaron gave me two parting thoughts:

  1. Live well with illness: Neither of us are sure what that means or even what it would look like. But at some point, God calls us to live well on the path He’s ordained for us. While that doesn’t preclude praying for deliverance, it does mean that we have a responsibility to endure. I think that’s one thing I’ve definitely learned by being around Timothy & Aaron. Learning to focus on living well & living Christ, period. Not to worry so much about the context. Or compare myself to other people. Because that’s all that God requires.
  2. Live well spiritually: We talked about liturgy. We talked about having a communion centered life. We talked about a sacramental faith. Mostly we talked about following the peace in our spirit and not compromising.

Besides that, Aaron commented that I need to surround myself with friends who don’t just make me comfortable but aren’t afraid to ask hard questions. That was a hard comment for me to swallow, not because I’m afraid of that, but because it feels like that’s all that I ever do. In the past year, I’ve been in more Quality of Life conversations, more fertility/genetics/gynecological conversations, more purpose-of-your-life conversations than any girl my age should ever have to encounter, let alone all in a one year period. I had a lot of friendships come and go and made some fairly difficult decisions. So, isn’t a girl allowed to kick back and relax once in a while???

At the same time, it’s nice to have solid friends when those hard times come, even if I manage to stumble into those difficult questions all by myself. In that sense, Drs. Leo, Samuel, and Mark have been amazing rocks. Diana, Alana, and Tabitha have never been afraid to ask hard questions and to pray & support from afar. Bethany’s been pretty amazing as well. Timothy & Grace have had open ears, especially Grace, who’s shared with me things on her heart as well.

It’s a lot to think about moving toward the future. I’m not entirely sure what God has in store for me. But I know that my season with Timothy & Aaron & company was not in vain.

Gratefully,
Abigail

Chronic Patient Book Club announcement

photograph on Flickr by Leo Reynolds
Bookstack by Fred Watson
I’ve decided to mark a new season in my life by forming the “Chronic Patient Book Club”. I’ve demonstrated (at least to the ravenous lion, et al) that I’m perfectly capable of reading 50 books in one semester. That means, I should be perfectly capable of reading 50 books on or about being a chronic patient within a year.

I learn primarily through reading (in case you haven’t figured that out.) I’ve read a lot of books about living with a chronic condition, being a physician/nurse/caretaker for a chronic sufferer, and how to be a friend to those in need. Some of them are good, some of them are very narrow; some of them are interesting, some of them are as thick as molasses. This is an opportunity for me to continue to hone by book reviewing skills while also staying accountable and sharing what I learn with you.

I know that many people don’t have the time or energy to read 50 books in one year, let alone find them all. But the fact of the matter is that I’m building quite a collection. And I have opinions on most of them.

So I’m starting the “Chronic Patient Book Club”. Every week, I’ll read a book, and on Thursday, I’ll post a review of it on my blog. I’ll give you a summary of the topics covered in the books, who wrote the book, what I learned from the book, and what audience I think this book makes sense for. Hopefully, I’ll learn a lot more about living with a chronic condition and how to help my friends to help me to live well with it. At the same time, I hope that you’ll find it beneficial at least as an armchair participant.

If you have suggestions of books that you think I ought to read or ought to be on the lookout for, I’ve created a form for you to suggest books. Keep in mind that you can always contact me at abigail.cashelle :at: gmail.com as well.

Must get reading,
Abigail

P.S. I hope to have a list of anticipated books up soon. Keep your eyes open for that!