Day 8 Treatment

Emma did not sleep very well last night and was quite uncomfortable going in to the infusion room this morning. She came out happy a few hours later. After a couple of hours rest we headed (at her insistance) to the King of Prussia shopping mall - reportedly the largest on the US east coast. 400 shops......yuk! Made some people happy though!

Day 7

Had my 2nd day of Ketamine for week 2 2day and I'm beginning to get quite used to going to the hospital to get an infusion.
My outlook on the infusion has changed a little, I think I'm more hopeful and excited about the outcome and also not scared to go to the hospital as I now know what to expect. It's been really amazing for me meeting other people that have RSD, I'd always felt so alone, that no one could understand, but now I'm sitting in a room, daily, with other people that have RSD too and it feels good to be... normal... I guess that's not the right word, but they just know how it feels.
I've made good friends with Bob and Mary, 2 other patients that started at the same time as me and will finish at the same time as well. They make me laugh when we start becoming more conscious, as they too laugh at me when I'm acting "tipsy". Bob and Mary, and the nurses make the infusion tolerable, even funny at times. I must say it is hilarious when Bob/Mary are more out of it than me, so I understand my family and my new found friends finding me funny when I'm a..bit... out of it.
The ketamine is no longer making me feel sick, and though I'm still tired after the infusion, I prefer to stay awake and my spirits are very high with the progress.
I'm quite excited today because my hands are.. different. I thought they were normal before, but now everything I touch is so much different to how I remember. I'm having a lot of fun playing with my hands, it's more exciting than you could think!!! and I thought that they were normal... haha so I'm looking forward to the next coming days hoping the pain in my foot will subside a little.
I can't wait to get home
All my love

Day 6 Treatment

Emma had 200mg of ketamine over 4 hours again today. She came out appearing to have had "a few too many" and was quite comical for an hour or so afterwards. Apparently Pink Floyd on the ipod was what put her in such a happy mood and she insisted that she had been to space
and was surprised that she could still breathe there. Perhaps it was the dark side of the moon? She walked up the stairs of our house afterwards though was a bit wobbly. She has not slept this afternoon but instead has read her new book "New Moon" (a part of the "Twilight" series). We've all had a quiet day reading as it was cold out again. We've just closed off the day toasting marshmellows on the open fire.

Weekend sight-seeing

We've just had a great weekend sight-seeing. Emma had a very hard day with back pain on Saturday but we were still able to drive out into the Pennsylvania countryside to the Amish "Dutch Country". We were amazed just how many horses and carts we saw. It was a very strange place - the horses and carts were mainly driven by boys or men with no passengers. The carts are old style but with modern rear-view mirrors and indicators. They race along highways battling tour buses and on-coming traffic. It appeared that the women were home sweeping - the most common activity we saw at the farm houses. We drove around the countryside for a couple of hours. I had told my boss that I was tired of technology and that I might stay with the Amish but we didn't really make contact so I'm still not sure about that one. Sunday we had a slow start and then went to the Philadelphia Museum of Art (photos from the steps of the museum are below). Emma's health was much better on Sunday and we all had a great time and felt very cultured. We were surprised at how many of the classics were in the museum; Monet, Renoir, Picasso, van Gogh etc.

5th Day & First Week Complete

Emma has finished the infusion today in high spirits. The infusion was over a longer period today so the patients could be more coherent when the Dr did his rounds. Julian and I had a chance to speak to the Dr after the infusion and he said he was pleased with the progress to date. Emma is less sensitive around her neck and arms and is now able to wriggle her toes on her right foot - her toes were pretty much frozen before. Her hands are still warm and overall she is doing really well. He said that next week is where we will see the most improvements.
It's now 2.30pm and instead of sleeping Emma is keen to go for a look around the neighbourhood so we are off shopping!

4th day of Treatment

Today the ketamine infusion was increased to 200mg over the 4 hours. Emma is feeling good now after a deep 5 hour sleep this afternoon, but towards the end of the infusion she got quite upset - a bit disorientated and also with pain. The barometer pressure dropped last night/this morning and when this happens it causes an increase in pain (unfortunately happens in all RSD patients) and for Emma it causes an increase in her muscle spasms in her right foot and leg. It is part of the infusion protocol that they periodically test her pain levels at various points. Some nurses have simply asked "If I squeezed you foot that'd be a 10 out of 10 right?" while others actually do the squeezing which causes a lot of pain. She has been given some Zanaflex (tizanidine hydrochloride) 4mg morning and night to help with the spasms. Dr S. is trying to find another doctor here that will treat Emma, as an outpatient, and perform a spinal procedure for the muscle spams. Emma has had these spasms for years but nothing has been prescribled to her before. Dr S. has also recommended more nerve blocks for the spasms in NZ. While Emma has the infusion we are not allowed in the room as it is kept quiet and limited light as most patients sleep. During the infusion Dr S comes and sees the patients and discusses their condition with them. We have been told that we will get a chance to have a catch-up with Dr S. tomorrow. Its 8pm now and Emma is feeling good and eating well.

Emma's View

well had my third treatment of ketamine 2day, feel much better than i did the day before, as i was given medication to stop me being sick. But still can't wait till it's over. I'm looking forward until friday so that i can take the iv out of my arm... it's getting really itchy!
2moro I'll have the maximum dose of ketamine (200mg) so hopefully I'll cope with that dose and can continue with that dose until the end of the treatment.
Sleep back at the house after treatment has been amazing, i haven't had such a good, uninterrupted sleep in years.
Looking forward to coming home and seeing more results from the treatment (hopefully a decrease in pain!!!)
Love to you all,
Emma xxoxx