Wednesday, August 22, 2007

Never Regret anything that made you Smile

Life is short, Break the rules, Forgive quickly, Kiss slowly, Love truly, Laugh uncontrollably... Never regret anything that made you smile.

“May today there be peace within. May you trust God that you are exactly where you are meant to be. May you not forget the infinite possibilities that are born of faith. May you use those gifts that you have received, and pass on the love that has been given to you. May you be content knowing you are a child of God. Let this presence settle into your bones, and allow your soul the freedom to sing, dance, praise and love. It is there for each and every one of us.” - Saint Theresa

Thursday, August 16, 2007

Feeling better

It's great what a little extra prednisone will do. That and a productive day in my clinic yesterday(where I got to be doctor instead of patient for a change) and watching the ocean and finding a new little french cafe and getting things back in some semblence of a doable plan have me feeling better today.

I wrote this at the beach:

We were not meant to work this hard. Not meant to spend beautiful days toiling inside. We were meant to have time to stare at waves. To watch children play. To enjoy long lunches with friends. To savour good food. To cherish time.

Saturday, August 11, 2007

First Day of My Life

I miss having energy to get up and do things. I have ideas in my head. Sometimes I carry them out in my dreams. But more often than not it seems that is where they stop. I went to breakfast with some friends today and then I could barely stand up long enough to go to the library and get the three mystery books so distract me. I start to get dizzy and weak. I made it back here and fell asleep for a solid two hours. Hot and in my clothes with my door open.

I'm flaring now. I think it's the first that I've been aware of. I got sent home from work on Thursday. The fellow said I had "pain in my eyes." It's true my entire body was hurting (and still does a bit). It was hard to stand because my knees and back hurt so much. Lab test are back, too. dsDNA is elevated again. It's the hours in the NICU (and a host of other strossors right now) that does it to me, I think. All I've been able to do is sleep. I keep meaning to do my dishes. I did make it out to dinner with my aunt and uncle last night but I got home and I was again exhausted. It takes so little to wear me out.

I went straight to my doctor from work on Thursday. Cried to her. I had being the "weak link"--the one they have to send home and call in cross cover for. The one who can't finish a call month. She called my rheumatologist and my hematologist. They recommended a few minor changes and she told me to go home and sleep.

I heard today that I'm "done with the NICU." They rearranged the schedule to have others cover it for me. I don' tknow quite what that means. I have some phone calls to make on Monday.

I'm afraid that I can't finish this now. In complete honestly, I'm not sure I want to if it makes me feel like this and sucks so much life out of me. I was okay during the out patient month with regular hours. It's these calls that I can't seem to manage well. Ben (another resident in the program)was helpful to talk with today.

I'm thinking of all sorts of options. In my fantasy world, I just want to quit, or at least take some time off, and find a center again. It won't be the same one that I knew at times before. I can't seem to manage to keep up with that one anymore. I'd do ceramics. I'd do some easy job. I'd listen to music and bake again. Maybe I'd meet someone who is okay with this new me. Maybe we'd start a family.

Reality sets in with loan repayments. Other options include switching to just pediatrics and droping the medicine half. I'll get my license in a few months, too. I could get a job in some smaller clinic then. I just wouldn't be able to be board certified in anything.

In my fantasy world, I'd still have time and energy to do triathlons and go for hikes and work out and go in the sun and visit friends and not be completely exhausted afterwards. Maybe that's just the flare though.



The First Day of My Life Lyrics
Artist(Band):Bright Eyes

This is the first day of my life
Swear I was born right in the doorway
I went out in the rain
Suddenly everything changed
They're spreadin' blankets on the beach

Yours is the first face that I saw
Think I was blind before I met you
I don't know where I am
I don't know where I've been
But I know where I want to go
So I thought I'd let you know
That these things take forever
I especially am slow
But I realized that I need you
And I wondered if I could come home

I remember the time you drove all night
Just to meet me in the morning
And I thought it was strange
You said everything changed
You felt as if you'd just woke up
And you said,
This is the first day of my life,
Glad I didn't die before I met you
But now I don't care I could go anywhere with you
And I'd probably be happy.

So if you wanna be with me
With these things there's no telling
We'll just have to wait and see
But I'd rather be working for a paycheck
Than waiting to win the lottery

Besides maybe this time it's different
I mean I really think you'll like me...

Wednesday, August 01, 2007

okay

I went to church last Sunday for the first time in a while. The reverend was talking some about a flying fish metaphor. That the fish leaving the ocean is like us leaving the infinite to spend time on this planet and meet and treasure each other. And at the end, the fish returns to the ocean. He ended by saying, "And how can that be anything other than 'okay'." I keep running that through my head for some reason. It makes the thought of almost dying somehow easier to bear in those hard moments.

Do Over

I think the NICU is making me flare.

"take care of yourself"

"let us know if you need anything"

Yes, please, I would like a new body now. This one used to be great but now it just sits around plotting against itself. In fact, give me two. I want life insurance now.

Short of that, what is anyone supposed to do? What am I supposed to do? It's impossible to "take care of" myself when I'm working 30 hour no sleep shifts, 80 hours per week. That leaves nothing left.

And my head doesn't seem to hold onto information like it used to. Maybe I was always this way, or maybe it is the strokes. I don't know. I just know that I can't seem to remember things I just read. I get confused in the details. I think I've done things that I haven't. I can't remember what happened. I can't remember names as well.

So what DO I do?

I seriously think I'm flaring. I've had left and now right elbow olecranon bursitis the past few days. Both of my knees are boggy and painful with arthritis. My head is hurting again. I get so tired. How do I know what a flare is?

I saw my rheumatologist yesterday. No decrease in the prednisone. Same everything else, too. He agreed about the arthritis in my knees. No x-rays though. Drew some blood tests. I wish they were back already to see if they track flares or not. He was nice as always, but some of the things he says I just don't need to hear now...or maybe ever.

For example, I told him about the woman I met while I was waiting in the coumadin clinic waiting room, which is shared with a rheumatology clinic. This woman is all made up fancy with a big hat and lots of make up. I'd seen her as I checked in and she clearly has bad joint pain. And a long course of it, too. I'm trying to study for a test, but she sits next to me in the crowded waiting room full of people who are all older than me. I proceed to politely ignore her but she goes on to tell me all about her boyfriends race horses and how she would have been a jocky if she didn't get sick when she was in her teens. And all about her chemotherapy courses. All about her two hip replacements. Her joint pains. Her medications. She also has had kidney disease with at least one if not two transplants. I think she even said she was on dialysis for a while. Has osteoporosis from the prednisone. She could never have kids.

As she goes on and on, I'm trying to suppress thinking about what she might have. Really because I aleady knew. But I didn't want to ask and confirm. Should've know with someone that chatty that she'd tell me anyway, "Lupus is a terrible disease."

Fortunately, I was called in to have my finger poked and learn that my coumadin is sub theraputic just as she started to go on about the rest of her complications.

(Fortunately?)

Anyway, I tell my rheumatologist about her and he says, "At least she's still alive."

I guess. Although I don't want to live like that. I don't want to end up like that.

"You know, 20 years ago, a diagnosis of lupus meant you had a five year 50% survival rate," he goes on to smilingly inform me. And also says that pediatric rheumatology is more interesting because the patients who are diagnosed earlier are usually at the sicker end of the spectrum.

I'm past the phase when this was even remotely interesting or unique or anything. It seems to be all people know me for at work anymore.

I'm mostly just mad that my life now has all kinds of requirements that I never had to deal with before.

He looked at my face closely as I was leaving, and warned me to stay out of the sun. Sunscreen. I know that. And I've been trying to be careful. It's irritating to me, though. Everytime I can't do something it's a constant reminder of this whole stupid thing. Lately I've just been doing it more anyway.

I visited my friend in LA last weekend and he wanted to go to the beach. So we met another friend of his there and laid on the beach for a while. I'm initially trying to be good and have block 55 on and keep my long sleeved shirt and pants and big hat on. But I can't even play in the waves? Fuck that. I did anyway. I got sand all down my bathing suit, but it felt great to be out there in the sun and water and surf and forget for a little while.

And I took the scenic way home from my doctor's appointment yesterday (through La Jolla). I had to go post call and had slept maybe a half hour the night before so I was exhausted, but they won't let me go to my doctor during work time, so there aren't any other options. Anyway, I drove by the Cove and all sorts of people were out walking around and exploring the tide pools and having picnics. I wanted to go for a walk but it was still sort of sunny out. I stayed in the car for a while. Even drove a little further. Then decided that I wanted to walk on the shore, at least a little. So I did. I did.

I'm sick of having to consider these restrictions every day. "When can I sneak away from rounds for a moment to take my medications?" "How can I work out with my knees hurting?" "The pool is in the sun. So I'll have to find another one or go at night." "When will I find time to go to all my doctors' appointments?" "Is it the medication making me feel this way?" "Are the clots gone?" "Was I really this spacey and stupid all along?" "How am I going to do this residency that even completely healthy people struggle through?" "When will I have time to pick up my meds?" "How will I afford all these extra medication and copay and labratory expenses?"

Maybe I should quit. I don't think I can afford it. Maybe I could switch to family med and they would give me credit for an intern year with what I've done. How am I going to do three more years of this?

I'm playing hookey now. Sort of. There were too many people in clinic so my preceptor said I could leave. I guess maybe I could have gone back to the hell that is the NICU but I didn't. I have to do work that I was supposed to do two days ago but no one told me until today when three people told me like it was some huge secret awful mistake, when all it is really it more redundant paperwork. The NICU drowns us in numbers, paperwork, changing plans, uncertainty, and wasted time.

I've been hanging out with my neighbors some. It's nice to have friends close. It sort of feels like an upgrade of the dorm comradarie in college. There are three of use that were born within a week of each other (out of ten who live here). Though Ben just moved, which is a bummer because he is a distractingly beautiful man, and nice. Bob wants me to watch a movie with him tonight. I'll have to see how I'm feeling (even that...I hate having to think about that restriction). He's very considerate and sweet. I don't want anything right now. That's what happened with Steve. I thought maybe if I could just focus on work I could manage to at least function satisfactorally in one arena of my life.

And now I'm surrounded by all sort of mothers and daddies and babies and pregnant women all so excited and expectant and hopeful. They're worried, too, because they're in the NICU, but they are there.

In "dead baby conference" (where they show us pathology of aborted fetuses and placentas--I'm sure it has a more proper name, but I don't know it), they talked about one mother who was over 40 and had all sorts of medical illnesses of her own and got pregnant with intrauterine insemination--which is a sort of thing you do if you can't get pregnant the normal (more fun) way. The comment from the crowd there was to the effect that she never should have gotten pregnant in the first place given her illnesses. I wonder if they'd say that about me now, too. Or if it is even fair to the baby even if I can get pregnant. Even if anyone wants to have a baby with me ever now that I'm all broken and sick.

My preceptor from clinic said today that it doesn't make any sense to go into medicine for any sort of money now because you could make just at much doing anything else if you work hard and do it well. Not a great time for me to hear this since this training is litearlly eating up my time and my body...and for what? He said that he read about a hair dressor in San Diego who makes $120K. I'm not good at doing hair either, though.