Ninapenda Chai

Today was my first REAL day of being a second year. Last month I was in the ED, a wonderful place where I thrive in many ways. Now I am on Pulm which of every service in the hospital is the service I most despised as an intern. I despised because I never knew what was going on, now I am expected to teach brand new, first month on the wards interns what the heck is going on.  The problems are partly the nature of how ill these kids are but also due to the complex nature of chronic care in America, a sincere lack of understanding that JUST BECAUSE WE CAN DOES NOT MEAN WE SHOULD and the various social backlash of all that and the fact no one else in the hospital wants to manage these kids.

As I stood in the chronic trach/vent unit surrounded by ventilators, monitors, suction tubes, catheters and back up ventilators and tubes and catheters….I could still taste the Kenyan Chai that I had a breakfast and I found myself carried away to  place of red dirt, mothers that breastfeed without shame and my one precious ventilator.  Suddenly I am filled with a deep longing to just be there in the Kenyan sunshine where my job makes sense. I find myself feeling guilty not for what I don’t have in Africa but what I don’t have in America which is some sense of guiding purpose. We are surrounded by options but we seem in some ways to lack the ability to discern any option other than just keep swimming.  Countless kids with medical laundry lists of problems, half of whom were there a year ago when I cared for them last. I can’t see the forest through the trees.  Am I really helping them or am I prolonging their pain?

But then the internal slippery slope sensor in my disabled souls says I cannot stop swimming….because these children belong to my tribe. But I feel like there are  prisoners. We have a created a system where we save them but we cannot sustain them, they can’t go home and well…as we say in Africa they can’t go HOME. (meaning the next life).

So I struggle to help my interns not drown and keep myself treading water. I find myself stopping and talking firemen with one child and light sabers with another and I hope for them and I pray for them. Both have been there for literally years of their lives. And while I travel the world, they stay. They stay.

And I drink chai.

Because sometimes being on Africa time if only for a moment keeps me from internally combusting from how much I ache for the lives in my care both my new interns and for the children who steal my heart as they perform acrobatics on the thin line between life in this world and what lies beyond.

And one day I will sit down with God and drink chai and ask him what was the right answer to the painful questions that haunt me…

SO I DRIVE on my day off to Clinic Far, Far Away….

I am ushered in by a nurse who asks about a billion history questions even though I handed her my neatly typed medical summary. Finally Dr. PMR  1 comes in. She is nice, young and I think some what impressed by my medical pedigree both halves. She does an exam, gingerly moves my joints as if she is afraid they might break right there on the table.

Then she drops the bomb. So Dr. PMR 3 does all our complicated injections. I must have done a POOR job of hiding how crestfallen I felt. How much I felt like crying because she followed with I will call him and tell him your story and get you in today or tomorrow.  I am impressed but skeptical. Then the nurse comes in with a list a mile long of how I need to be NPO, have a driver, stop all pain medicines.  I am so frustrated. This is not major surgery. No one is coming near me with a sedative for this. I just want to be able to go to work….please. I don’t want narcotics, I don’t want acupuncture , I don’t want your pity, I want to be able to do what I love which is take care of sick kids.

I live furious and frustrated. The next four hours were a low point of the saga. I cried. I watched Glee. Then I cried. Then I watched more Glee.  Then I cried. Then I changed my shirt, took the dog out and went to see my boss.  Without crying, I told them that I need medical leave sooner than planned. I wanted to prepare for the reality that I could not perform the miracle of my third year of medical school again and starve off surgery.

Then I went to lunch, the aquarium and a baseball game and went to bed.Woke up ate pancakes, went shopping.

My roommate is working nights and has been following the saga and came with me as my driver. I mostly stayed NPO.  I registered and they asked me if I wanted MD behind my name. I shyed away from flaunting it. I got called in by a nurse in blue scrubs. She took my history, I adamantly refused sedation. She told me I was inspirational (in which I died a little bit on the inside). I changed into a gown.  They take my blood pressure…its a 100/60.  And they marvel at it, I mention that is normal for a 26 yo who when well exercises regularly. They stare at me as if I am some kind of alien.

They make me sit in a wheelchair to go the 40 feet to the procedure room. Dr. PMR 3 comes out and he shakes my hand. Dr. PMR 1 had called him, he knows the story. He tests the strength of my right leg. I hop out of the wheelchair while four people dive to support me. I brush them off, walk to the table. We talk about my life plans and they refer to me as Dr. My Name. We shoot a couple of pictures with just a probe. There is a silence. I cran my neck to see the pictures.  I see nothing but what I expect to see the hip is eating it self. The eyes over me are mixed with disbelief, pity and shock.  PMR 3 notes I am craning my neck and breaks our silence by having her move the monitors so I can see. I know I should be scared out of my mind but somehow I am rooting for the dying hip. I whisper internally just 9 months, we just have to get through 9 more months….

The shot is nearly perfect, he does a perfect hip arthogram prior to the injection the magical kenalog that will give me four more months of being just another pediatric resident. It will get me to my 27th birthday.  I make a jest as he struggled for a minute to get through my ligament, saying “Well at least some of my connective tissue is working”Dr. PMR 3 says apologizes for all the NPO/Driver/drama, all of that is for epidural spine injections. He says when i am ready for the next shot he can fit me any time and I don’t need to worry about any of that. The MAs and Nurses all look a little shocked that I am going to violate scared protocol.

Then its done.  I walk back to the wheelchair, I try to get up as soon as we hit the holding area and am pushed down by two nurses who say they have to take my blood pressure.  I am starving and anxious to get back to my day off.  My blood pressure is still remarkably low in the eyes of the nurses. They painfully read through every discharge instruction and then finally release me. I drive Amy and me to our favorite mexican place and eat my two missed meals.

6 mons, 3 orthos, 2 PMR docs, 2.5 hours on the phone and so much drama for one silly 5 min procedure.     Its so silly.  so silly.

And I ask how do Non-MD people get through this system?  you wonder why people with chronic pain dont have any semblance of normal lives….this is why.

but it buys me 3-4 more months and I can’t complain.

Trasition Saga Part II

SO I called my PMD (a real one who is not a geneticist, does Pap Smears and make me feel not like a pariah) and while I am waiting for her to call me back. One of my classmates over hears me talking in the house staff lounge and suggests PMR (Physical Medicine and Rehab)gently and sweetly. I get a referral and then call to make an appointment:

Amy:  Hi, this is Amy. I’m a patient of Dr. PMD. I need to make a PMR appointment.

Random Medical Assistant (RMA): OK well when are you free?

Amy: July 25 and 26.

RMA: When else?

Amy: July 25 and 26

RMA: Are you going out of town?

Amy: No. I work as a pediatric resident at Childrens.

RMA: What are your hours?

Amy: 6 AM to 6PM and every fourth day 3o hours.

RMA: Oh…. Let me transfer you.

…

Amy: Hi, this is Amy, Patient of Dr. PMD. I need to make a PMR appointment and I have some scheduling issues. I am a resident at Childrens.

RMA2: What do you need out of the PMR appointment?

Amy: I have a rare form of arthritis that I was born with. I had a hip replacement in 2009. The other hip now is deteriorating. I need a steroid shot to help me be able to keep working.

RMA2: Oh….well how about Dr. PMR1, she is an expert in acupuncture.

(oh for the love)

Amy: Does she do hip injections?

RMA2:  Yes and acupuncture. You could also see Dr. PMR 2.

Amy: Whats the difference?

RMA2: Well PMR 1 is a girl, PMR 2 is a guy. and PMR 1 does acupuncture.

Amy: Do they both do hip injections.

RMA2: Oh yes.

Amy: Who can see me July 25/26?

…..a 15 minute repetitive conversation ensues about the fact that I work 80 hours a week and have these two days off….finally I secure a appt with Dr. PMR 1 who of course only has availability at an office 30 minutes away from where I live.

RMA2: Do you have back pain? Neck pain?  Knee Pain? ….

Amy: No…No…No…No…just hip pain.

RM2: Is this a worker’s comp case?

Amy (who has now been on the phone for 35 minutes):  No its a being born comp.

RMA2: You were born with hip pain?

Amy (at the point of throwing the phone across the room): SO July 25 7:45 at Office Far, Far, Far Away and Dr. PMR 1 can do a hip injection that day and you scheduled enough time for this?

RMA2: Oh yes, yes, yes plenty of time for her to do acunputure or the shot.

Amy: Thank you.

….

…..

Transition Saga…back story

For the past 6 mons or really ever since I have moved here I have been trying to figure out a contingency plan if I get hurt or injured here.  I have been told that no one sees skeletal dysplasia here. except the pediatric orthos and genetics. I went to genetics clinic once. It was awkward and I felt out place by about 20 some years.  There was this idea that this pediatrician wanted to be my primary care doctor and I couldn’t imagine telling this man about my menstrual cramps or my sinus infection.  Although I was impressed with how well he knew my language…I rapidly realized that this guy knew nothing about who to refer me to for REAL care like if I fracture something or need pain management. I was further horrified when he suggested at my next we could show some of my bone findings to some of the “residents” my colleagues. Visions of being on display time after time again in front of every medical student and resident from here to Kingdom Come visions of HIPPA violations that occured in medical school and I put my foot down and said, Sir, I am 27 years old and i want an adult doctor who is not also my colleague. I want some kind of separation between my crazy, busy life as a pediatrician and my crazy life as a patient.  I may be a medical side show but at the Childrens Hospital I refuse to play that game.

My rebellion lasted about a week. No adult ortho would take me on as a patient. So I reluctantly went to the peds ortho clinic which was awkward but not quite so bad.  They agreed that they would care for me if I got hurt in residency and would do their best to treat me with as much respect to my double life as they could.

I went home sad and a little horrified that I would have to be brought into the trauma Bay.

Then the right hip started going…..it was a slow decline but by Feb the pain was constant. So I e-mailed everyone I could think of trying to find a doctor who could give me the pain erasing steroid shots.

The geneticist recommended a guy who did some transition work with osteosarcoma patients.  I made an appointment fully expecting to get a steroid shot but the guy did NOT do them in the office like my cowboy world’s expert in Baltimore.  He wanted to schedule it as minor surgery to happen in the OR at 7AM. I had to be NPO, find a driver. It would cost me 4 x times as much and take me out of work for two days. I was confused and a little distrustful of the guy. So I went to Baltimore on the way to Africa and got the 5 min in office version and was pain free for four beautiful months in which I hiked the Kenyan coast, snorkeled in the Caribbean and didn’t use my wheelchair at all on 2 months on the wards. Then it came back with a vengeance but this time I was not traveling through DC/Baltimore…..

Biking Grace

My low point of medical school was not my step 1 exam studying, not my surgery rotation or even breaking my arm on the first overnight ED shift (ironic), it was a beautiful September day in my beloved Blue Ridge Mountains.  The next day was the start of my pediatric rotation but I had come home for my August vacation. It was a beautiful day and I thought it would be a good day for a bike ride. I did not have space to store my bike in NC so it lived with my parents.  My bike is a big tricycle with a basket. Its not that I couldnt learn how to ride a two-wheeler it was more that my parents and i wanted to spare me the fractures that might ensure in the learning process.

I pulled it out of the garage, mounted and went to pedal.  Seering angry painful sounds came from my left hip and I doubled over from the shock of it. Tears came to my eyes.  Panic filled my head,  what I have been denying for months came to a head.  My left hip was falling apart and while it might be a bike this week it would be walking eventually.  I had been fighting the battle for months with steroid shots, NSAIDs, doctors’ opinions, yoga, prayer, positive thinking, denial, you name it. But in that moment I realized the war was lost.  At 24 yo I was facing the haunting reality that my disease was eating away at my hips, my function and my biggest fear my independence.

My parents came outside having seen me double over.  I brushed it off, got off the bike and told them I think I should get back to NC a few hours early to read over my pediatrics materials one more time and go to church with some friends.   I grabbed my bags, threw them into back of my car, hugged my parents and then proceeded to cry for 2 hours as I drove to NC.

It would take me a whole year to finally muster the courage and the trust to finally take the plunge and fix the hip. The bike stayed in the garage looking sad. I avoided looking at it.

Then finally three years later when I moved into my new house in May, my Mom bought my bike to my new garage. I mounted it briefly and was pleased at how painless it was despite the right hip is going too now. But I avoided it for a few months partly my schedule, partly it was so hot and partly because somewhere deep down I think I feared the humiliation and remind of my vulnerability.

Today I woke up at 2 PM after working an overnight and all of the sudden was determined to go for a bike ride. I went to Wal-Mart purchased a bike helmet, bike lock. I grabbed a bottle of water and I rode through the square and around the block. My neighbors stared at my bike a bit like they might stare at a circus truck and over dramatically veered out of my way.The hills around here are a bit brutal on my inexperienced legs  and I didn’t go very far. My right hip protested a little but it was bliss.

Redemption.  Sweet, sweet redemption.

I am going to do it tomorrow all over again.