It has been exactly a year since I posted about my NLD. If you haven't read any of my 'necrobiosis story' thus far, you can read about it here. Fast forward to last week, I was faffing around in my bedroom (as per usual). I glanced down towards the floor and as the light bounced off my leg, I noticed a big red blob didn't stare back at me. I did a double-take, eyes focused on my calf. I rotated my leg a little. I jumped to a different stance, thinking my eyes were tricking me. With a crash and a wallop, I swung my leg on to my bed for a closer look... Below are two comparison photos. Left; pictures from July 2016. Right; pictures from about 2 seconds after I swung my leg up on to that bed, last week. My diagnosis of NLD was an absolute faff. From being messed around for two years, swapping from diagnosis to diagnosis... And then finally reaching a conclusion, only for it to be incurable. I didn't see much hope. This time last year, I vowed to look after myself. I said I'd use Cetraben cream alongside Protopic ointment and hopefully prevent the NLD from getting any worse. And here we are, one year later... Apart from using the cream and ointment on my NLD, I found myself not paying it as much attention. I wouldn't panic about it, I wouldn't get 'up close and personal' to see if the lesions had changed or looked a funny colour. I simply got on with life. At first, I thought Protopic was worthless. From reading things online and talking to people with NLD, no-one seemed to have a good experience with it. However, my Dermatologist said 'it's what I'd prescribe my own daughter in this situation', so I kept using it. I'm sure it was gradually making a difference, just nothing I personally noticed. I even asked about light therapy but apparently I have too many moles. (True story). That's when someone suggested using Cetraben. With Cetraben, I did notice a difference. It almost immediately made the lesions less red. After a while, I noticed my leg muscle was 'wasting away' (somewhat). So I stopped using the Protopic for a while as I thought that was to blame, it wasn't. I slowly started using it again and agreed with my Dermatologist to apply it 'one - three' times a week, instead of daily (sometimes twice daily). I now apply Protopic (one - three times a week). I absolutely lather my calves with suncream in nice weather, as the skin is very delicate/thin and needs looking after. And I occasionally use Cetraben (kind of like a moisturiser). Another thing I really think helps? Sun. I mean, look at the colour difference in my legs on those comparison photos. July 2016, I must've been part vampire. Now, at any given (sunny) opportunity, I get that suncream on and stick my ankles out. It's also a great excuse for a holiday. I am by no means a medical expert. Whatever you do, consult your Dermatologist.
Just don't give up. Try new things. I know some NLD patients wrap their legs in banana skins?! What works for one person, might not for another. I am simply sharing my experience with NLD because when I was diagnosed three years ago, I would've killed for someone to say 'don't panic, keep trying' rather than 'you're incurable'.
2 Comments
Luanne
27/7/2019 05:11:01 pm
Sun hmmm...willing to slap in some sun screen and sit in the deck relaxing...not a bad way to spend some time! 😄
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Danielle Cottey
9/7/2020 07:56:09 pm
Thank you so much for this blog post. I currently suffer with necrobiosis and things like this are keeping me positive xx
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