Hey everybody, wanted to make a post but hope it doesn't come across as giving advice with no ability to do so. I have NOT had LL and have no idea how daunting/painful it is (though clearly it seems pretty rough) - but there have been a lot of discussions about wanting to limit pain medication use but balance not having the pain limit ones ability to lengthen, so I wanted just throw my two cents in on something that people might find helpful! Please stop reading if you think this is gonna sound preachy/annoying!!
I'm a doctor in the US and in med school we were taught a lot about mindfulness meditation as a method to prevent longterm burnout in the field. Mindfulness is a meditative practice which is now pretty secularized and used to train one's mind to in a non-judgmental state, accepting and aware of the present moment (I know, sounds kinda funny at first!). The meditation itself is extremely simple and literally starts out with you just becoming aware of your breathing, that's it! It's similar to Cognitive Behavioral Therapy (often used for depression and probably frequently referred to for those of us who have gone to therapy for negative feelings about being short!), except you just accept whatever is in front of you rather than attempting to actively replace it with a positive thought.
Though it hasn't been super widely studied (only really became Westernized/vogue in the 70s), I think it has a LOT of promise when it comes to dealing with pain and anxiety-provoking experiences. Here are several studies for those interested:
-http://www.sciencedirect.com/science/article/pii/S0304395909006502 - link between low mindfulness and 'pain catastrophizing' (HUGELY applicable when you're having a scary invasive surgery and your mind can run wild with what each pang of discomfort might imply).
-http://onlinelibrary.wiley.com/doi/10.1002/cpp.653/abstract - similar study to the above
-Don't have the link, but two others if you're able to get access to scientific journals: The effects of brief mindfulness meditation training on experimentally induced pain. The role of trait mindfulness in the pain experience of adolescents.
IF you're interested in trying it out, there's loads of free meditation resources online, I particularly like some of the guided meditatons from ucsd but you can google whatever:
https://health.ucsd.edu/specialties/mindfulness/programs/mbsr/Pages/audio.aspxAnd if you really are sold by the idea, then I'd rec reading a short book to really get the idea of what you're trying to go for, this is a short one that hits the major high points:
https://www.amazon.com/Mindfulness-Eight-Week-Finding-Peace-Frantic/dp/1609618955
