Caps

It's been two weeks since I've had a proper day off. But on the bright side, I have one off in a couple more days. If I don't crack up in the meantime.

We had our retreat for the med-peds program the other day and we asked anonymous questions of each other. I randomly picked our program director. I asked her how long she would remain director and why.

Someone wrote for me, something like, "I know you had a tough intern year. What about this past year has been your favorite thing." Spain is all I could think of in the moment. In reality I said something about learning from last year's trials. I was about to cry. I was crocheting blue baby hats throughout the meeting and I cut my comments short and said the best thing was also that it was not last year and that I didn't stroke again. I didn't know what to say. On the way back to work yesterday night after the meeting, I talked with Bryce and Victor. Cried to them really. Sometimes this is too much. In reality, this past year has been much harder than intern year. It's the adjusting that's hard. And the lack of time to adjust before something else happens. Emotional survival mode. Trying not to think about anything too much or for too long. I'll just look up Wiskott-Aldrich syndrome instead. Or stay awake to keep myself from dreaming.

There are the hat memories, though. I've been giving crocheted hats away. To lots of people. Some to my neighbors. Some to friends. Some to family. I had a stack of them at one point. I tangle up my anxiety into the yarn. People like them, though. Doug wore his made to order green and white one for hours on potentially the hottest day of the year so far. Not a knit cap day. Randy has been nicer to everyone since I gave him his camouflage cap. Victor wanted a cool "cal-trans" orange one to which I added black and green. Keith naps in his yellow and black Charlie Brown one. The grey/orange and red ones keep Scott and Cherie warm on our walk around the bay to the ocean. And there are the two baby hats I made for their little one on the way. Jackie was so pleased with her burnt orange one that she wore it home from the med conference where I'd made it--another hot day. Joe wears one of the early versions that is an odd mixture of colors even though it looks like a multi-colored mushroom. Colin's friend, Joe, says the one I made him is the perfect length and that he looks "hot" in it. Mom likes her collection. As does Jane. Karen says her multi-colored soft greens and blues hat matches her eyes perfectly. Dad has a thin black one for biking. And Bryce finally likes one--the brown and blue one I made that brings out his freckles and his eyes. He's visiting now. It's so nice to have him in town. If he doesn't get drafted, he'll probably be here for a while.

I think there are more.

I started another new rotation today. Team leading at the University hospital. I was up til 3 am learning about my patients and worrying--two things I have perfected lately. The first day went fine. I just never feel quite smart enough. I try to remind myself to not be so hard on myself. Victor tells me I'm one of the bravest people he knows. Brave or foolish has been the question.

Bob just called and told me his friend got jumped outside a bar, went into a coma, and died on Wednesday--in the ICU where I have worked.

Randy told me about his girlfriend's mom in hospice.

One of the patients I made comfort care last month is still happily demented and doing so well they're putting him in a more permanent facility.

I get wrapped up in lives outside. I wonder sometimes if it's to avoid my own.

But there are the hats. So I'll shower and try to sleep thinking of that. Back to work tomorrow to get more new patients and round on the whole team since it's the interns' golden weekend (two days off in a row).

Mom and Bryce went to a fancy party tonight; I was invited at the last minute, but was too tired to go. So napped for three hours when I got home--after Joe gave me a surprise present. Which is another happy thought.

I'm sure I'll feel better after more sleep.

Love your Live. Love your Liver.

That's what the back of a man's shirt said as mom and I rode behind him on our return to my sunny studio after we swam in the 67 degree ocean. He had a basketball bungee-corded to the back of his bike, too. The letters on his shirt were green.

I was dreading coming to work tonight. I feel unsure and unsupported by myself in the last few ED night.

And I walk in to a bed surrounded by my co-resident, the ED attending and several nurses. Uh oh.

It's a patient with a sick liver. Very sick. With bad upper gi bleed. They make him comfort care within minutes of my arrival. Family continues to pour in.

Love your liver.

Moonshine from Sunbeams, May 2008

The course of every intellectual, if he pursues his journey long and unflinchingly enough, ends in the obvious, from which the nonintellectuals have never stirred.
Aldous Huxley

We are here and now. Further than that, all knowledge is moonshine.
H.L. Mencken

God changes appearances every second. Blessed is the man who can recognize him in all his disguises. One moment he is a glass of fresh water; the next, your son bouncing on your knees, or an enchanting woman, or perhaps merely a morning walk.
Nikos Kazantzakis

The story is told of a holy man who lived in a large house on top of a remote mountain. Over time, news of the holy man’s greatness spread throughout the land, and many seekers made their way over the mountains in hopes of having even a brief moment with this saintly being. Each aspirant was greeted at the door by a servant, who ushered him or her into the house and guided the visitor through several rooms. After a few minutes the servant and aspirant arrived at another door, which led out of the back of the house. The servant opened the door and indicated to the visitor that it was time to leave. “But I was hoping to have even a few minutes with the holy man!” the aspirant would utter in frustration. “You just did,” answered the holy man as he closed the door.
Alan Cohen

If you don’t find God in the next person you meet, it is a waste of time looking for him further.
Mohandas K. Gandhi

But the important thing is not the finding. It is the seeking. It is the devotion with which one spins the wheel of prayer and scripture, discovering the truth little by little. If this machine gave you the truth immediately, you would not recognize it, because your heart would not have been purified by the long quest.
Umberto Eco

Many Roads to Happy

One of our consult patient has the same rheumatologist as me. She has lupus, too. And transverse myelitis along with it. I'm finally able to get through more than a paragraph of information about lupus complications (although the 80% 10 year survivial rate at the bottom of my handbook still stings) and able to take in more information about it. I actually really enjoy rheumatology. I did before it happened to include me in it's disease spectrum and now I do again.

In clinic yesterday I got to do a joint aspiration--an ankle that we though had gout but probably doesn't because the negatively birefringent crystals weren't present. Then there was the 66 year old former boxer vietnam vet who has many manifestations of rheumatoid arthritis, including perhaps fluid in his lungs (plueral effusion). I'm intruiged again. I like this stuff.

I had a bit of an epiphany on Friday as I sped down I-5 on my way to the house staff meeting. I might sort of know what I want to do when I grow up. Maybe half time pediatric clinic and half time adult rheumatology. Unusual combination, granted, but the hardest part is dreaming it. And it may change, which is fine, too. There are many roads to happy.

Anniversaries

May 3rd marked an entire year since I lay in the MRI machine for the second time in the same day, wondering why they'd called me back so late at night and knowing it must be bad. They saw the clots and admitted to the hostpial where I worked then as an intern. I find it odd to remember the change a year can bring. This year, on the anniversary of my strokes I was at the medicine department housestaff meeting, crocheting a hat and waiting for next year's schedule. The day before I'd started my rheumatology consult time and loved it. And this year, at the same time when I was having the MRV which showed the clots in my brain and finally a reason for my intractable headaches and numbness and vision changes, I was enjoying thai food at the ocean with new friends who just found out about her their pregnancy. What a difference a year can make.

It Rheumatology is generally known as the joint specialty but it also includes autoimmune diseases such as lupus and antiphospholipid syndrome. I didn't tell the fellow or attending that I have both, plus a prothrombin mutation. Not yet. Maybe not at all.

We have only one patient we spoke of on the consult service right now. A 52 year old man with repeated strokes and what looks like vasculitis on his angiogram (though he has a negative brain biopsy); he doesn't appear to have lupus, but he does have antiphosphlipid syndrome. We don't even go to the other hospital to see him together because his strokes have rendered over half of his body immobile. "He just lays there," says the fellow.

As she and I waited for the attending, I asked her if she ever has rheumatologic emergencies. She tells me about a disease I haven't heard of: Catastrophic antiphospholipid syndrome, CAP for short.

"Basically you start forming clots everywhere. This patient was in 26. She went into multisystem organ failure."

"Did she carry the diagnosis of anitphospholipid syndrome before?"

"No but she had had seven spontaneous abortions. She presented just not feeling well, with thrombocytopenia. She had bad pulmolnary hypertension."

Likely from all the clots in her lungs, I add in my head. "What sets that off?" I ask, glad now I have not told her that I have antiphospholipid syndrome.

"We're not sure. Could be infection. Anything can be infection." She's from Texas adn she says it with a bit of a drawl: "Cood bay infek-shun." Could be. She goes on, "We ended up recommending plasmaphorisis to try to get the antibodies out of her body but it doesn't really seem to be them that are pathogenic. It's the clotting that is the problem." I know very well that the clotting is the problem. Too well. "We gave her six rounds of plasmaphoreis, but she died."

"Oh." I didn't see that coming. Well crap. Time for me to change the subject. Thanksfully the phone rings and she answers it. I go back to the other computer and look up the stroke patient's cholesterol level--maybe it's just normal old atherosclerosis for him. Nope. His cholesterol isn't bad.

I remember that I had labs done recently again, too. All of the same labs we'd just recommended to check in him, actually. DRVVT, anticardiolipin, beta gamma globulin. And my rheumatologist has just repeated my double stranded DNA the week before. It's still positive. It's always positive. But this time it's 108 instead of 125. This time last year, it was too high for the assay to measure: >300 is all is says for the May 4, 2007 lab data.

A whole year. What a year it has been.

There is a list somewhere that I remember learning about which ranks events in your life according to how stressful they are. I thought of it this morning on the way to rheumatology grand rounds. It includes: death of a spouse, loss of a child, moving (check), changing jobs (every month I do something different), death of a loved one (Pop), dissolution of an intimate relationship (mine and my parents'), major illness (three, four, five? they all blur together), etc.

Managing stress became one of my biggest challenges over the past year. At the root of everything that went "wrong" (if we must qualify events as right or wrong) simply was my ability to respond to them. My body told me that I could no longer handle the level of stress at which I'd previously functioned. The external pressures would be the same, probably worse, but the internal response had to change--or else. And the "or else" actually had a antecendent now: or else I would get so tired I couldn't do anything. Or else I would not be able to walk because my knees would hurt so badly. Or else surfing, biking, running, playing would be completely out of the question. Or else the clots could again grow in my brain and block off the already too small passages draining blood to my brain. Ultimately, or else I could die, I suppose.

It's hard to imagine that last one now that I'm feeling so well lately. I've made it through my first team-leading month which went well--room for improvement; and it will be better next time. And I love where I live. The area and the people. I'm excited again to learn at times. I'm taking pictures and expanding again. I'm back to running and biking and swimming some.

Last year it was all I could do to maintain my sanity in my eleventh floor hospital room with Steve there worrying over me and the parade of consults coming in and out. Neurology telling me I had clots in my head and my RF was positive. Hematology telling them to keep me until I was theraputic on the coumadin. And Rheumatology telling me that they weren't yet sure, but I might have lupus. Still unable to read or write or work, scared and staring out the window, trying not to think too much.

What a difference a year can make.

With all of the struggles that this last year has brought, until March 24th I was comforted that no one close to me had died. And then Pop did. That kept me awake last night. I miss him. I was on call again last night for Children's--the kind of call where I stay home unless they need me which is somewhat anxiety-producing as I toss and turn and check my pager to make sure I haven't missed any pages after changing the battery to make sure it makes louder beeps.

I'd miss him when I woke up. I remember growing up when he slept just down the hall. I'd peak my head in to say goodnight. "Good night, Pop. Love you." "Oh, good night, Hon. Love you too. See you in the morning." It's still sometimes hard to believe that those mornings have passed. I think I dreamt about him somewhere in my fits of sleep.

Time marches on. Changes waits for no woman. No man. And really, thank goodness it doesn't. Who want to wait to live and change? Just that some years are harder than others. And what a year it has been.