I'm always so relieved when people come to me and ask about my Necrobiosis. When I was first diagnosed, I didn't know of anyone who had it. I searched for a hashtag on Instagram and found as little as 16 posts. I am no 'NLD' guru, by any means (and I'm definitely not a medical professional!) But if what I've experienced can be of any use to someone, then I'll continue to write about it. In light of what Renza was discussing at #ATTDDSMS, "we need to end the stigma associated with developing complications and the only way we can do that is for those with complications to feel comfortable sharing their stories". This is blog 3 of my Necrobiosis story, to read the others please go here! "okay, so how the heck do I fix this?!"To be honest, I can't tell you exactly what I've done to achieve this result. There is no simple answer, unfortunately. It could be one of these things, it could be a combination or I could just be pretty damn lucky. NLD will never completely go away, I'm left with what are basically very pale scars. However, I started to feel more comfortable with them a long time ago and it only gets better with time. Here are a few main areas I can discuss from my experience.
I started using the Omnipod insulin pump in 2016. My BG control started to get a lot better, especially when introducing the Freestyle Libre/Dexcom later in the year. I can't say whether the better control directly correlated to the improvement of NLD, but it sure as hell didn't make it any worse! So, fast-forward 4 years and my "control" has taken a serious hit. I can no longer afford Dexcom/Libre and after using it for 3 years, the lack of it left me feeling blind. Part of me was panicking that the NLD would "flare up" again. It didn't. So that's good to know.
I went back to my dermatologist and we agreed that I'd use Protopic once a week and use Cetraben as a kind of 'moisturiser' to compliment it.
Light Therapy was discussed as an option for treatment of NLD. However, this wasn't meant to be as I happen to own more moles than Europe combined. True story: My closest friends have let me go the day with chocolate on my face because they didn't realise it was chocolate and thought it was just another mole. Not once but TWICE this has happened. (Should probably be less messy when eating chocolate). Anyway... With light therapy not being an option, I decided to take to the outdoors and I made a conscious effort to at least show my ankles when possible. Protopic and sun are a major no-no, so I'd only ever let my NLD see daylight if it hadn't recently been covered in ointment and had in fact seen half a bottle of SPF50. "Do i have to be uber-careful now?"Yes, kind of. But if you're as clumsy as I am, banging your shins is inevitable. You can't bubble-wrap your legs every morning. (Well, I suppose you could...) A few days after my biopsy and being uber-aware and careful, I bashed my shin off a slab in the garden and made a right mess of my leg. I panicked for weeks as it healed, thinking it would go horrible, ulcerate, get infected, you name it. It didn't. I obviously cleaned it daily and kept it as tidy as possible, which to be honest is the only thing you can do in that situation. Enjoy yourself! Try to be safe, take whatever precautions necessary and if the inevitable happens, keep it clean! mental strainLike with any illness, NLD has an impact on your mental health. My next necrobiosis post will probably focus more on that side of dealing with a diabetes complication. 9 out of 10 messages I receive are sent from young women who are stressed out by their diagnosis, girls who are panicking about what their legs are going to look like, desperately searching for a cure. When your best shot at "curing" this thing is a shot in the wind, it's easy to get upset and stressed. Especially when there aren't many people out there who have this condition. Find the people you can talk to, whether it's friendly diabetics on the internet or your mom, and open your heart to them. You don't have to feel like a burden if you want to talk to me, I'll always have an open inbox for you to rant/cry/spam away. When you can, stay positive! Confidence comes and goes like the wind. Just remember there will be days where you wake up and you're ready to take on the world. But also remember it's okay to have down days. I have had my fair share of crying over my damn legs. I've been moody towards people who are trying to help. I've refused to wear short clothes. I've even day-dreamed about cutting my legs off. As time goes on, you learn to live with these things that get thrown at you. You learn to accept them and focus on other things. As diabetics, we're very good at adapting. conclusion.
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