More photos

Newport Beach, Orange County, California

Philadelphia. Emma's appoinment was in the building behind.

1st Visit with Dr Schwartzman

We arrived in Philadephia yesterday and the weather is quite similar to NZ only with a brisk wind but not too cold. Today Emma had her appointment with Dr Schwartzman at Drexel University Medical Hospital. It was reasurring to meet with a Doctor that has had so much experience and knowledge working with patients that have RSD. He explained many things to us and gave Emma a thorough examination and said she has full-blown/full body RSD, not just her foot/leg where she exeriences the most pain. Through this exam he pointed out to us symptons that Emma has that had not previously been connected to this disease. It was really reassuring and gave us lots of hope. Emma begins treatment on Monday and Dr S. and his team have a special infusion room where they treat RSD patients daily with the treatment Emma is scheduled for. They showed us the room where several patients were undergoing the treatment. He explained that 50% of people that have the coma treatment (that Emma won't have - only available in Germany and Mexico) are pain free but that the outpatient infusion that Emma will have has more varied results. He said that there will be improvement but it is unknown to what extent.

Friday - Double Black

Yes - two Friday the 13ths in a row as we crossed the date line. We'll call it lucky though. The only issue we had was that the rental car company were out of both GPS's and maps. We travelled from LAX to Anaheim using only an A4 size photo copy map of LA. We found ourselves on the pacific coast highway which surely was not the fastest route but quite interesting and we eventually found our hotel about 4 hours later after a battle with a strange numbering system on our street which is 10 miles long. I spent the evening downloading the USA western region map for our own GPS and wishing I had done that before we left. The car is a dodge charger which impressed Luke - we needed a full size car to fit the wheelchair in. Not much room left for luggage! Yesterday we had a great day at Disneyland and had fine navigation there by none other than Darth Vader (via our GPS). Today's travelling was navigated by Hannibal Lecter whcih made for a few interesting moments on the freeway. We seem to be running on LA time in the mornings and NZ time in the evenings which simply adds a few hours extra in the day. So as it's about midnight and we've walked the mean streets of LA all day (and survived!) we'll call it a night. Highlights of the day - Meal at west hollywood. Lowlight of the day - parking in LA's fashion district - was expected to surrender my keys so that attendants could juggle the cars all day as there was not enough room. Quite another world in that part of town - the rest of downtown LA was practically deserted as it was Sunday.

First few days in LA

The flight over was good, and most of us managed to get a few hours sleep. Emma travelled reasonably well, much better than we expected. We are now up to date with the movies. Saturday was a full-on 12 hour day at Disneyland and it certainly lived up to its reputation. There were thousands there and huge queues at the rides, with the most popular being over an hour. Emma was given special treatment and was able to enter through the exit lines and go straight to the front - there's got to be some perks to being in a wheelchair!

Sunday was a sight-seeing day spent covering Down Town LA, Hollywood, Beverley Hills & Santa Monica. Also saw some famous stars on Hollywood's Walk of Fame.

LA Photos

Downtown LA - Pershing Square - where are all the people ? (Sunday)

Pershing square - LA

Disneyland

Luke becomes jedi

Main street USA - Disneyland

City Hall - LA

Final tests complete and ready to go

Quite a few tests were required before heading to Philadelphia. A full series of blood tests, cardiology tests and a psychiatric clearance were required. The test that proved most difficult to have was a Tilt Table Test. All of the hospitals in our local area had long waiting lists and could not do the tests for several months - which woudl be too late! Thanks to Christchurch hospital for fitting Emma in at short notice. Our only backup option for the test was to have it in Philadelphia at a cost of $1000 US so flying to Christchurch was a great saving! Emma was picked up in Christchurch by her Grandmother, had the test and then spent a very pleasant weekend with family in the south. Emma fainted on the Tilt Table after 10 minutes or so. Her blood pressure returned to normal quite quickly and so it was a good result for clearance for the ketamine treatment. Unfortunately the Doc grabbed her RSD foot to help her gain her balance after fainting. :-( :-( I think Emma needs to wear a sign when seeking medical treatment "Don't touch the foot!".

So tomorrow we fly out Auckland to Los Angeles.

My Overview

My name is Emma and I have Reflex Sympathetic Dystrophy (RSD), commonly referred to as Complex Regional Pain Syndrome (CRPS). I have suffered from this pain condition for six years, since the age of 10 and it has completely changed my life. I first got RSD from a minor sprain injury, and was diagnosed with RSD months later. My life became a battle in which I had to fight the pain to continue my life. I had to give up all sports which I had previously loved and it took me a long time to accept that I wouldn’t be able to run again like I once had with so much joy. I have tried all the typical treatments for RSD including sympathetic nerve blocks, acupuncture, physiotherapy, tens machine, pain medication… but nothing worked and the pain has continued to get worse. A good day is a day in which I can cope with the pain. The pain is always there, but I am able to smile and laugh and feel the joys of life. On a bad day the pain is all I am able to see. A bad day is a day where I have failed to lock the pain away and once again it comes to control my life. It is hard for me to describe the pain as it varies greatly and there are often so many different types of pain, often at once. The most continual pain is the burning sensation. It is as though my foot has been placed in a fire, and I can’t pull it away. It continues to burn.