Prior to all of this (the post below) happening there was the aforementioned facial rash and a general increase of attacks, joint pain, fatigue, insomnia, low mood etc etc. So with all this in mind I wrote to my specialist who then had his secretary call me back to say my appointment was next week. I hadn't realised this so I felt like a bit of a pleb but I did have three letters from the clinic with different dates on them all marked as 'sent' on the same day. I couldn't get through to them on the phone so just assumed my appointment wasn't until March.
Anyway, what I hadn't noticed was that the clinic had moved location to a totally different hospital and that I had to go to London Bridge now. Unfortunately there is major works all over that station and the normal trains aren't stopping there. The website said that I could go from my local down station and get the Canon Street train so I planned it that way and all seemed fine.
The London trips are always traumatic, painful and tiring. In other words, scary! Due to my insomnia at that point I just gave up on getting any sleep that night and started the journey. When I got to the station the ticket officer told me there were no trains to Canon Street and I had to get off at this station I'd never even heard of. I checked with another guard and he said change at Lewisham and the announcement said change at Dartford. So I had no idea where to change. The lady in front of me on the train was going to a hospital so I had an idea to follow her.. unfortunately they weren't going to the same hospital - and- got off at Dartford. Argh. When we got to Hither Green I just thought screw it, I'll get off here as time was really running out to get there on time. Thank goodness I did. The next train was a Canon St one and I got there just in time. Journey stress! It didn't help that it was freezing cold and drizzly. I only had to wait about an hour to see my specialist and he was lovely. I got to see him with no students this time which was a lot more comfortable. He was kind as always and gave me a few hugs. We talked over the rash, hair loss and some other matters including the -really- low mood. He said that if I wanted to try anti-depressants or sleeping tablets he would help me but it has to be my choice. He's also given me new medication that people with SLE/APS take - Planquenil (Hydroxychloroquine). Apparently it takes 8-12 weeks to start working so fingers crossed. I really, really hope that it helps with the day to day stuff, maybe even the 'bigger' stuff. He noted down the attack from Christmas day and the hemiplegic migraine but when he wrote the letter he completely missed any mention of the attack on Christmas day.. Ah well, I can't complain. The rest of the letter was good.
By the time I'd gone to the pharmacy and got my lunch I was shattered and the journey home was horrible, damp and cold. I managed it and that's what counts. Obviously that much exertion resulted in an attack the following day it seems (second half of post below).
That's done for another 6 months and at least the next trip will be during the summer when it will be warm.. hopefully!
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