Today is the fourth anniversary of my starting writing this blog and I have always put a post up about it on the anniversary. I will, however, leave blogging about blogging for now as I want to report back on an interview with my doctor this morning that has left me feeling hopeless.
I went to have a really serious talk with my doctor (General Practitioner - GP), a woman I find it easy to talk to, as I must find better care or cure for the eczema and inflammation that has destroyed my femme life because this condition means I cannot wear makeup or use any product on my face without experiencing a severe flareup. Last week, for instance, after a day in a standard non-hypoallergenic, non-cosmetic foundation (which was Kryolan TV greasepaint suitable for all skin types, and even for kids, and which I have used regularly since 2008 with no problems) my facial skin blistered, wept and cracked and then fell off three days later and my eyelids swelled up till they looked like lychees and my neck puffed up red, pimpled and sore. It took a week to get back to merely being flaky and itchy. Other factors may have played a role: a new sleeping bag probably still with manufacturer's chemicals in it, the friend I stayed with having bad psoriasis, a different environment... I wish I could pin it down to one cause, one thing to be avoided.
The discussion with my GP this morning left me hopeless. She confirmed her colleague's views last year that there has been no progress worth speaking of in this field since I went to see the consultants 30 years ago. Indeed, she said that NHS consultant dermatologists now won't normally see any new eczema cases as this chronic condition has defied cure. This situation is a step backwards from 30 years ago. However, she will still refer me. If they turn me down then she and I will have a further discussion on what to do, including the trans factor which, in the end, I barely touched on as I felt that the reason why I would particularly want a cure makes no difference to facts: there is no certain cause and no known cure. To be fair, the Eczema Society, dermatologists, and other relevant persons have always emphasised that different things trigger it for different people (e.g. it's stress for some, but it's contact with certain things for people like me), that the condition takes different forms and intensities, and that different remedies work for different people. Like we are finding with cancer or diabetes, it might actually be a collection of similar diseases labelled under one umbrella.
I want to think about how to deal with this. Growing a beard and leaving my skin totally alone is the best remedy I have ever found and it did a lot of good but it didn't cure it off my face completely. Do I grow another beard for 1 or 2 or 3 or more years till it's all gone off my face? or try to get some femme time each month but possibly put up with inflammation and flareups for ever because it can never heal properly?
I feel really devastated as well as poxy. Without my femme life I have lost my very soul.
Sue x
I am reluctant to say much in the context of your latest entry as I tried to find some hope / words of inspiration for you in the past and I still hope for the future too. That as hard it may seem, you HAVE to cling onto that Sue, in fact you have got too as there is no alternative sadly. One day at a time is your best option and the unexpected just may happen? Please Take Care. xxx
ReplyDeleteThank you for your support, honey. The love of my friends is the best remedy I have. Sue x
DeleteIt must be a terrible thing, to be denied who you are. I don't say that lightly, or glibly. All I can say is look after yourself and try to remain positive.
ReplyDeleteAn old friend of mine had bad eczema for a few years and it took her some time, to pin down what her triggers were. But, she did do it and that mix of treatment and avoidance, worked for her.
I really hope you can find something that works for you. Perhaps a silly question, what about mineral cosmetics?
Thank you, Lynn. You are a wise old bird. OK, forget the old bit!
DeleteI will be discussing this issue with alternative health practitioners (with healthy scepticism) and also with the manufacturers of the chief foundation products I use: Mac Kryolan, Dermablend and Neways and any other suitable high-quality items. My problem is that my skin is overreacting to anything at all that touches it so pretty much any product is likely to cause a flareup, although water-based ingredients seem better than oil-based at present. Sue x
That's horrible, and devastating - not just for what it's already done to but for what it potentially means for the future. For the last few months I've had an outbreak of small - probably stress-related - hard scaly rashes on my legs and upper arms. Unsightly but easily covered up. But that's nothing compared to what you're going through. I can only hope it does turn out to be something other than the Kryolan if you've been using that for years.
ReplyDeleteThank you for visiting and commenting, Susie, and for your support. It means a lot. It's not the products themselves, it's that when I get this condition, my skin objects to anything on it - it doesn't even like the medicine! Like you say, anywhere else on the body can be covered up. Sue x
DeleteHave come back to this post a couple of times, not really sure how to respond, but not wanting to stay silent either.
ReplyDeleteI'm really sorry to read what you've written above, and I hope the prognosis improves. xx
Thank you, Demi. It's kind of you to comment. I have a few ideas on how I might progress. Sue x
DeleteSue, like Demi, I've come back to this post, always a little lost for words. Now the 'cat is out of the bag' on my flickr photos, I just wanted to say that my skin troubles are annoying, but really my heart goes out to you, you are a beacon for many of us and you don't need this - life can be so unfair. xxx
ReplyDeleteThank you, dear Nikki. A lot of girls have shared their own dermatological troubles with me - psoriasis, eczema, rashes, marks and blemishes of all sorts and some are badly affected and even disfigured and it's very upsetting and hard. Normally we can cover up in some way, but with it right on my chin it's too visible to do anything about. Reintroduce the bonnet and veil perhaps! Sigh. Sue x
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