Treatment Update Nine
Mid-January 2013 (various dates)
This is a summary of various visits which might be a bit jumbled as I didn’t keep especially good notes and have been in nearly every week.…
Before going in to see Dr McBride there are various things I have to do. I don’t know what they test my urine for but they didn’t rush me into hospital so it must have been quite splendid wee. They also check my weight (a tad over what I’d like to be) and blood pressure (no idea why, but I don’t like having it taken; it feels like my veins are about to burst).
I am a few weeks into my biologics treatment, and being monitored as a result of my breakdown, so Dr McBride is seeing me every week (during one check-up we have a very surreal conversation about one’s “inner chimp” … you had to be there*). Dr Mizara was away for a bit but I had a session with her when she came back which was extremely useful. I am being weaned off ciclosporin too (75g morning and night). Early in the month my cholesterol has gone up to an all-time high of 8.9 which really needs addressing. I can’t go on statins until I’m off ciclosporin as they seem to have an Israel/Palestine thing going on. I have to start the ball rolling with my GP though (place your bets now as to whether I have got around to it before the next blog). Also, my liver’s up a bit. Wonder why that could be? (Christmas Time, Mistletoe and Wine … and then some more wine … and perhaps a little more)
The reason that Doctor McBride is seeing me weekly at the moment is, I think, to ensure that I don’t start dribbling or talking to a hat (see previous blog). As ever she takes time to talk and give me insight and understanding. She and her team were fabulous over Christmas when I was in real need of help, and the aftercare is very effective. Anyway, I’ll concentrate on the purely medicinal side for now, as I think regular readers will be pretty clued up as to the gold standard TLC I get from all of the team at the Royal Free Dermatology unit. Their absence from the New Year’s Honours list was notable.
On a later visit my PAASI score is good, which is something. Another positive is that I seem to be responding well to the adalimumab. I only had my blood done before my appointment so we didn’t have the full results but the general analysis is OK. I will have to wait for the specifics. Skin-wise I’m pretty clear and people have commented on the brightness of my face (without prompting). I have had a slight outbreak on my arms around my elbows so that needs monitoring, but as far as my pink body armour goes, this is something of a giant leap. My scalp, as ever, remains incorrectly proportioned as far as the hair:scurf ratio goes. There’s a little patch of dry skin on my back but otherwise my trunk is free not only from plaques but also that reddish discolouration that is usually here reminding me that even when I’m in remission a potential outbreak is never far away.
Dr McBride says that I look healthy – if I was a dog I’d have a nice wet nose. Ah. Yes, regular readers, you’re right. She has said that once before. Suddenly I am reminded that though the team here remember our names and are conversant with our history and individual problems, they do not hang on every word spoken during our sessions (we on the other hand, do). I am one patient of many on just one day. They see patients on other days. I generally go once a month, so in addition to my Tuesday there are another three per month where a constant stream of disparate patients occupies my seat. So of course Dr McBride doesn’t know that she’s used that metaphor on me before. I know though, and ruefully note how effective the caring side of this process is because it’s just one tiny, isolated moment where I realise that I am not as special as I like to think. I suspect most patients with most illnesses feel that all the time as they negotiate the medical treadmill. Brilliantly, of course, as I mull this over later Dr McBride e-mails me out of the blue. The full analysis of my bloods is through, and she thought I’d probably like to know now, rather than wait until next time, that they have shown significant improvement since my first visit this year. She didn’t need to do that, but obviously knew I was a bit concerned so took a moment of her own time to reassure me across cyberspace.
I feel all special again, which puts a bit of a spring in my step. My nose feels a little wet too.
*I will blog about this at another time – Dr McBride has been reading a book called The Chimp Paradox which is useful for psoriasis sufferers. It helps us gain some understanding about the mental processes we go through that prevent us from having a stress free life.