Me and My poor quality of life are going upstairs….

I have been in 7-8/10 right hip pain post-call for about a month and half.

Yesterday was Grand Rounds and I was post call. It was on chronic pain in connective tissue disorders….NO REALLY it was.  I slumped in the back, ate my oatmeal and hoped that sleep would overtake me quickly. It was all fun and games while the geneticist gave an explanation of connective tissue disorders. Then the rheumatologist went on about Fibromyalgia and JIA.  I drifted in and out. Then the psychologist got up to talk and went on about chronic pain and patients (our) poor quality of life.  And how much they (we) feel persecuted in the hospital when they come seeking meds and how they pass up activites they would otherwise enjoy and then how there is a higher rate of suicide. They went on to talk about new research studies that were ongoing looking at day hospital treatment for chronic pain. and cognitive therapy.

I sat there in the corner in my imaginary white coat (I never wear one, it scares kids) and shook my sleepy head at this. Its all fun and games until someone misses the point.  Maybe part of why we have a higher rate of suicide and “poor quality of life “is not so much our pain but the medicine we use to treat it. And medicine in the literal and larger sense.

What if instead of taking our chronic pain patients out of society and out of school to be in a day hospital program, we find ways to help them engage in life? What if instead of giving narcotics like candy to our sickle cell population, we tired alternate methods or we at least stop complaining about how they are addicts because WE (the doctors WE) gave them their addiction!! What if we stop trying to make pain less depressing and find ways to make life more worth living? What is our goal, be pain free, or be living our lives?

I agree grand rounds friends, chronic pain is a mind game.

But its some what clear to me that you have never played.

Chronic pain is a series of choices.  Difficult choices. Defining choices but choices never the less.  Every day you wake up and you decide what rules today?  My life or my pain?  Do I fit my pain around my life or fit my life around my pain?  You can tiptoe around on eggshells and slip and fall or you can run and not look back.  You don’t choose to live with pain but you do choose to live to the fullest. TO live with joy. To live with gratitude.

Doctors, all the study show we are actually quite bad at understanding what “quality of life” means to our patients so maybe we should listen to them.

I rolled my eyes and my wheels and took my poor quality of life upstairs to rounds and helped save some lives. Then I went home, had a mug of tea, a long bath and a nap. I woke up and read a book, went to bible study, came home and finished the book.

Like I said me and my poor quality of life…..

Gratitude

One of the things about growing up with a progressive although manageable illness is it teaches you gratitude for the little things that make life truly beautiful.

Baking something yummy.

North Carolina Wine

Old Friends.

New Friends.

Summer Nights.

Clean clothes.

Good Books

Clean hair.

Pedicures

Grace

Children and their wisdom.

A Good Night’s Sleep

Given Much

My mentor gave Grand Rounds on Global Health yesterday.  I was post-call and in pain but I stayed the extra hour, set in the middle of the intimidating auditorium. I found myself nodding and smiling even after one of he worst two week periods of my professional life. About half way through, he quoted the bible. Most ears would not have heard it but I heard it.

“To whom much is given, much is required.”

90% of the world’s children live in the developing world and a huge chunk of them have limited access to care. In the world of endless ventilators and children who are trached and have permanent feeding tubes where I live it is easy to forget that most children are lucky if they can get IV fluids.

We have so much.  And much, much is required.

As I stare in the face SHINY HIP number two a procedure that costs 50,000 Kenyan Shillings and probably at least 30,000 to 40,000 US dollars.  I am so grateful. So grateful. That I don’t have to go beg my relatives to come up with the money or choose between eating and my medicine.  I am so grateful for my magical insurance card that several precious friends here in the States do not have. Not to mention for the divine provision that the best surgeon in the US is at my finger tips in network, four hours from my parents’ home.

I have been given so much.  And much, much is required.

I am disappointed about canceling my trip to Zambia in Jan, a casualty of the scheduling changes that took place to make way for the shiny hip. But I am so grateful. So grateful that I have been given a way out of the constant pain and the progressive disability so that I can be healthy enough to move to Africa full time a year and half post-op.

So much given and I am ready to do what is required.

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.