those of us about to die salute you

When I was nine years old, I had a massive triple surgery on my lower extremities. I spent a week in the PICU (thanks to a memorable morphine hypersensitivity…hives in a body cast) and then an additional week in the hospital. Then 10 weeks in a cast from my upper chest to my toes. It was tied dyed. I have a scrap of the casting material that I use as a book mark. My whole world those 10 weeks revolved around anticipation of March 31. The day I was to get my cast off.

To get back to Delaware required a 2.5 hr car ride in the cast. Then a 1.5 hour appt with cast saws and the cracking of plaster with me lying there trying desperately not to move for fear of being cut (I had a previous experience in the middle of the night with a sleep deprived resident who did manage to cut my knee open with a cast saw) and slowly becoming more naked. Finally it was done and there I was there with hairy (yeah for puberty deciding to hit that winter…), scaly, skinny but ever so straight legs with pink silk lines running everywhere. The second stage was the removal of all the external pins which is well the strangest sensation EVER. It wasn’t quite painful simply extremely odd to be keenly aware of the nerves inside of one’s bones. Then slowly I was lifted back into the chair and gravity won out and I nearly sat up as I was lifted down, pain shot down my legs as my muscles awoke to the outside world. I gasped it was as if my lower body had turned to fragile feathery mush.

I was wheeled slowly x-ray and tried to fight back tears as they tried carefully to pick me up and put me on the table. An hour later I am slowly exploring the idea of sitting up on my own and much like a 6 mon old seriously afraid of falling. In comes the orthopod and his posse. Up go the flims. I was a bright kid and I cringed with horror at these pictures of me. Thin lines ran here and there. I sat there looking as if someone had struck me and felt absolutely devastated. It was supposed to be over and I was supposed to feel better. I was supposed to go home and celebrate.

That was kind of how the boards were. My brain is feathers and mush. It came and went and as I walked out of there today I became steadily more pessimistic. I came home and cried.   Oddly it’s yet again March 31.

and thats the last I want to talk about it.

12 days or bust….

Apparently morale is low in NC. I talked on the phone to a friend for the first time in two weeks. Folks are not getting the scores they want on their practice tests and are considering extensions. I feel oddly spooked…beginning to think my 45 point increase was some sort of fluke. Oh well. 12 days or bust.

I will pass and frankly I can’t study any more without staying sane.

A Gold Star for the hippee project

I got a congrats on my Facebook today and I didn’t know what I was being congratulated for. I had surfaced online for the first time in days. I open my school account and find 10 e-mails. Turns out my presentation for my medicine for the underserved elective was voted the top in the class. I was really surprised.  Happy but mostly surprised I have never been signaled out (beyond giving the now annual love disabled people talk).  Too bad my life is run by multiple choice, give me an essay topic and an excellent editor (XOXO to all of you wonderful grammar nerd friends) and I can ace it. Give me a multiple choice test and I will talk myself out of 25% of the right answers.

My presentation was kind of shaky and rushed and very, very different than the other three. Mine was a narrative with a lot of photographs of children and Eastern European art and scenery. The others were very public health focused, people were cured of malaria, maternal and infant mortality were decreased. There were statistics and evidence based medicine and epi. I had a single slide of stats which were colorful and again bordered by bright eyed beautiful children.  I didn’t cure any diseases this summer, I played Nannie more than developmental pediatrician even.  I was the last presentation of the day. After 45 minutes of public health and EBM, I was anxious and uncomfortable in my semi-sensible looking professional clothling. Who was I fooling? I make a better flower child than a public health officer. peace. love and medicine. woot.

Needless to say I was bewildered when the e-mail came.  I am thrilled, its somewhat meaningless beyond an extra sentence on my CV. But its kind of nice to know that perhaps my class does not think  I am completely bonkers…  or maybe bonkers was easier to stay awake during than sane.
at least I told 100 folks about the plight of my tribe in Romania.

still here

I made a 45 point improvement from my pre-study practice Step 1!!!!!!!!!! I am within deviation of my target score!!!!!!!!! And I am only half way done studying!!!!

Relief doesn’t even really begin to cover it.

Rare Disease Day Follow up

you offically know your disease is freaking rare when you know all the spokes people worldwide personally….

http://www.bbc.co.uk/ouch/closeup/rare_diseases.shtml

Scroll down about half the page and you will see Ms. Campbell. I was fortunate enough (as was BAXLEY) to go visit Alana two years ago. She lives in a beautiful little town on the Irish Sea.

Also the girl who wrote the article has Kniest. Emma. We have never met but she referred to me in her blog as a tall person with Kniest.

oh to be back in scotland…