Treatment Update Three
Monday 6th July
A change from the norm. Today I am in at 9am to see Dr Mazara, my derma psychologist, and then at 3pm to see Dr McBride and a joint specialist to see if my back aches and pains are dues to psoriasis-related arthropathy or are simply entropy and old age combining to start my day off creakily.
Dr Mazara is very nice, but I have to admit to mixed feelings about going to see someone to talk about myself and my emotions. When people used to say psoriasis was stress related this gave my younger self something of a boost – stress sounded like noble suffering, a sign that this twenty something drama student might be deeper than his fellows. And we all know how successful those tortured artists are – Mozart, Van Gogh, Tony Hancock, well why not add Toby Hadoke to that list (in fact, most people spell my name closer to an approximation of Hancock’s than my own ; maybe it’s fate). Now, though, the somewhat maturer me is somewhat less patient with the idea of navel gazing. I’m not of a generation who fought through a war and saw all sorts of horrors – and my grandparents and their lot seemed to survive pretty well just getting on with things without requiring the state to support them wanging on about things that upset them to a medical professional. Dr Mazara assures me though, that lab tests as recently as 2010 have shown a relationship between a patient’s psychological state and the grip that psoriasis has on them, so it’s not all hippy-hippy-let-it-all-hang-out-man claptrap. Whatever – I have resolved to throw everything I can at this so I’m not going to let my own innate prejudice towards self-indulgence stop me from trying something. I am aware that hatred of self-indulgence coming from someone whose career involves talking about himself out loud a lot might seem a bit hypocritical, and that’s because it is. It’s almost like I loathe myself for doing what I do and being what I am …. So I shouldn’t be seeing a psychologist for what reason precisely?
This part of my treatment is pretty well individual so I won’t report too much of it; I’m not being cagey, but I’m not sure there’s an awful lot about it that’ll be any of use to anyone. However, I mention it because there’s an article in the (wash my mouth out) Daily Mail that covers Dr Mazara’s work and the connection it makes between emotion and the skin (blushing, sweating etc.) seems a convincing one. Anyway, for the first and last time in my life I will direct you to the Daily Mail as it’s an interesting piece, though the comments below it have a reassuring level of insanity just to remind you how squalid the area of the internet you have just entered truly is (it’s here). Have a hot shower afterwards. And the dubious must be aware that I too am very much a reluctant soul-bearer: I think people wallow and self-indulge at their peril. But Dr Mazara is good at putting a sensible and reasoned perspective on things and I don’t leaving her feeling anything other than more positive so I’m giving it a shot: and I may as well go for it wholeheartedly or not at all.
Then onto Dr McBride, who is cautious about my slightly raw sounding throat and prescribes me some antibiotics just in case I sense another outbreak of tonsillitis. She is very aware of my imminent trip to Edinburgh and so is treating me accordingly. She doesn’t want to try anything drastic as if anything goes wrong it’d be a bit of a disaster geographically and would probably be as useful for my show as a one star review from The Scotsman. So ciclosporin continues, with a vat each of Doublebase and paraffin moisturiser to take with me. No surprises there really, as I had only really seen her last week and not much has changed bar her contact with the immunologist, which revealed that I will probably be alright taking the biologics. Whilst she says that it is good to have them “up our sleeve”, she feels that “the purist” (I like that) in her is erring towards acetratine with preventative anti-biotics. The reasons for this are outlined in my last treatment update and were simply re-emphasised today in the light of this new information. She noted, with a wry smile, that there are some possible side effects, and I glanced glumly upwards at my thinning thatch. Ah well, I suppose now that at least when I consider my increasingly threadbare pate I can reassure myself that it is no longer baldness – ‘tis a noble brow rent by suffering. Anything for the most dramatic emphasis. Anyway, today I was there for my joints and did some bending over and stretching and all seemed OK – there’s a slight query about my back so I’m having an X-Ray, but I was discharged by the joint doctor on the very first day I saw him. I can only imagine how jealous Drs McBride and Mazara must be of the lucky fellow.
The Psoriasis Association has started a new initiative which involves sufferers writing a postcard to the disease to tell it how it makes them feel. The cynical amongst you may scorn this as you did my opening paragraph, but I’m fascinated that those at the very top of the profession of understanding, curing and representing the disease all feel that there is something in it. So I’m not going to argue. They also feel that there is a massive stigma still attached to psoriasis, and that it is rarely talked about (eczema steals all our limelight – it’s the A-Lister of the skin disease world). There’s an event/initiative happening in October that I will try to be involved in, which is helping to raise awareness of this affliction that touches between 2-4% of the population. Dr Mazara tells me that there are still people who are too ashamed to admit that they have it. Because I’ve never been worried about my looks (what’s the point?) and dress like someone who fell asleep in a hedge in 1976 and only thawed out yesterday, I guess I’m lucky. I still feel ashamed sometimes, and very self-conscious if people stare or remark upon it loudly within my hearing but without acknowledging me (which happens more than you’d think). Generally though, I don’t mind people seeing it, I don’t mind talking about it, and have little difficulty expressing myself – but for others I know that it is a far more difficult and painful process. So who am I to begrudge them the opportunity to try? It’s a lot more than skin deep, this disease.
Here’s a link to the postcard business.
I’ll end this by quoting from Josh, who made a comment on one of my earlier blogs. I don’t know Josh, but his story is very telling and I thank him for sharing it.
While I only have two “spots” of psoriasis–one of which is a big, angry red, often bleeding, plague looking circle on my right upper arm–they really negatively affect my life. I live in NYC, where beauty is king, and have stopped going to the beach this summer as I don’t want to endure the stares and questions (“Dude, are you like dying? Is that AIDS?”). Although I am in top physical shape, I never take my shirt off anywhere which precludes me from playing basketball–once a passion of mine–anymore.