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Add to the Stigma the Unbearable
Hi Ed: So many times I've started this email and then think, what do I say, does anyone actually want to hear it? I've come to realise that releasing everything I'm keeping inside is essential and this is one outlet I have where I don't have to worry that I'm not making sense or that the listener doesn't understand. Mostly I try not to imagine people reading it because it makes me slightly self conscious! But if there is just one person who reads it and thinks, “Yes, that’s exactly how I feel, I'm not alone,” then my embarrassment is at least worthwhile.
I'm having a nightmare with my P at the moment, I have been on methotrexate for about a year now and I've read enough stories about it only being effective for awhile to feel very apprehensive about the increasing number and size of patches. Why, why, why, I wail. Bargaining in my head, just the itch, please take the itch, just let me sleep. My sleep last night was a fitful nightmare of laying, eyes open, using every bit of will power I possess to keep my nails from my skin; only to awake in the morning to skin like fire and realise I have done it anyway.
The weather is improving and with it the length of trousers, skirts and dresses reduce ... everytime I dress my heart beats fast, I cannot hide my feet in summer, I cannot hide my legs in a swimming costume. I imagine every person I walk past is looking at my feet, my hands, any part I am unable to cover that day, I have a new way of handing over money to avoid the inevitable glance from the shop assistant, not nasty glances, curious, but nonetheless they make my chest constrict.
I used to find the psychological side of P the hardest to cope with but with the recent bout of itching I am in two minds.
This, I am aware has not been a happy email but I promise to write another when the emotional rollercoaster that is life with P is on a smoother route, if you will still accept my emails... -Rebecca H.
Of course I will continue to accept your email, Rebecca! People will read your email and be thankful because you have shown them they are not alone, crazy, or mentally ill.
The biologic Humira has been kind to me. I have, for many months now, been living with only three lesions, one large one on my right calf and two smaller ones on my left calf. I don't wear shorts, so that hasn't been a problem. And, for awhile, I was chuckling at the occasional itch I could trace to these legacy lesions. I was able, for awhile, to deny them — until the other day when, sitting at this computer, I reached down to scratch the biggest of the three through my sweatpants. I think I was making that initial move subconsciously, but very quickly I became aware that scratching through the fabric wasn't doing the trick, so I tugged the pant leg up and had at the lesion, and though I wasn't staring at the act, that unmistakable feeling of breaking bunches of flakes free came through my fingers — and I stopped, let the pant leg drop back down, then scooted back from the keyboard to take a look at my shoe and at the floor, where the flakes lay, looking back.
That was, as I said, the other day. This past weekend I awoke to find blood on my pillowcase. Before I launched into a mirror search of scalp and face, I noticed blood on some finger tips and under a nail. This I had seen before and it explained the blood on my pillowcase. I looked at the large lesion on my right calf: dried blood all around it — and on the sheets. I thought to myself, “How do I sleep through all this violence?”There is more than just stigma associated with P. Something more physical, neurological, goes on in our heads and I'm disinclined to try to reduce it to some simple cause-and-effect thing (as some derms would do) and then seek a pill to fix it. Whatever is the matter, being alone with it is much scarier than knowing there are others who understand. -Ed