Wednesday 13 May 2015

5 days to go


I had another trip to the hospital yesterday with more bloods taken, ITP Baseline test before treatment starts and reassuringly they're going to tell me I don't have Hepatitis or AIDS which will be reassuring :-)

I also have my paperwork for admission with copies of my consent form and instructions from my lovely MS nurse to not try to be Wonder Woman and to take it easy and be kind to myself next week and in the coming weeks (she knows me to well and that I will just carry on as normal right up to the point where I fall flat on my back)

I have been talking via t'interwebs with a lovely lady who for the purposes of the blog we will call H - like a James Bond character 😀 - who is having Lemtrada this week in Surrey and getting a 'blow by blow' of whats happening. She has given her permission to me to publish her week on here as a 'this is what my week might be like next week'

Monday - Day 1
Bring boiled sweets or mints. The Steroids and Lemtrada make for a nasty taste in the mouth. Also a
selection of things to drink,
Blood pressure etc being taken every 30 minutes and no rash by the end of day 1

H update:  I've got juice beside my bed and I can't drink it. It tastes awful. I would usually love it!
She also had a headache which started later on in the day

Tuesday - Day 2
H is getting both oral and inline Antihistamine which should help with the rash. Blood pressure checks continuing every 30 minutes.

H update : Hello. No headache today but I'm very tired. Slept all through my infusion nearly. No rash so far. Expected overnight / tomorrow. All be worth it. I've slept all the way through mine today. Blood sugar has been high today so they've still allowed me to have the infusion but ice cream is sadly off the menu and no more sweets x

So my preparation list came into existence off the back of these conversations. I've also added my own 'secret remedy' to it for the rash. There's a product called Solarcaine which I've always bought in the USA, it's a burn gel - Aloe Vera Gel with Lidocaine in it. It's great for burns, sun burn and as I discovered as an adult when I finally got it at the ripe old age of 32 - Chicken Pox - no itching, no irritation just very ugly pox all over my body. I had no scarring at all because I never scratched. A bottle arrives tomorrow from those nice people at Amazon and goes into my essentials kit bag.

I've had a little foot drop this morning in my right leg ...... :-( that's a first I'm used to it in my left leg but it's never happened with the right one until today, I nearly threw a cup of coffee in my face recovering from the stumble but didn't fall and use my face as a brake so I am playing the glad game - I'm glad I didn't spectacularly go splat :-)

My water consumption yesterday was good and in line with my planned levels. My cog-fog today is a little worse than I had expected it to be after a recent oxygen treatment but then I had gone 10 days with the holiday so I think I need to get myself back to fully topped up levels again - roll on Friday when I get one in Oxford :-) I'm wondering if I could sneak out between infusions and get a top up next week at Solent (see previous comments about not being to hard on myself and pushing too hard .... yes I'm an idiot, but at least I know I'm an idiot :-)   )

The sun is shining and it's a beautiful day I am smiling and positive it's all good :-)

Happy day everyone xxx

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