May 29, 2017 in Random, VRUnicorns

Sarcoidosis is a bitch. Neurosarcoidosis is even bitchier. I’m slowly phasing off steroids and am currently on 10 mg. Steroids worked quite well on my overall condition when I was on higher dosage than now, but doctors don’t like that I take them much longer (been going 10 months on/off) and I’m still in the middle of tests for Neurosarcoidosis as Danish healthy is messy these days…waiting lists and IT problems…but at least it’s free (although I’m trying to fast track by paying private hospitals on the side). I can live with the lung Sarcoidosis being untreated as I’m only stage 2 and already have scar tissue, so it might have stopped progressing. I want answers and I would like to ‘move on’ with my life and the psychological part of ‘being sick’ is driving me crazy. It doesn’t fit well with my hypermind and my wish to make and ship a bunch of more VRUnicorns games this year. The damn part about Sarcoidosis is that it’s rare and there is very little knowledge about its appearance, progression and remission. So no answers for me on hospitals…just tests and monitoring. So I feel trapped in my own body. At least I don’t have ‘visible’ symptoms, so I look healthy when I look myself in the mirror. Running joke when I visit the hospitals is ‘that I look so well for a Sarcoidosis patient’ and I can fake being well when I sometimes leave my beach exile and venture into the real world…for a short while. Then the symptoms catch up again and I need to escape and recover. My treatment options are narrowed down to various¬†immunosuppressive drugs (and I keep swimming in the ocean every day…cause that’s still the best pain medication and I refuse to take more poison). It’s pretty much all chemo…and all those drugs and potential side effects scare the hell out of me. Hoping to have a diagnosis on the Neurosarcoidosis soon, so I know whether I can avoid them drugs or have to start considering myself as a ‘real’ patient. Most of these drugs have visible side effects and I’m worried that they will make me ‘realize’ that I’m sick and have a huge impact on my mental health. One thing is having low energy, pain and struggling with work and straight thinking because my brain goes foggy, but losing my hair and getting rashes will definitely not help on positive thinking and trying to fight away the depression that usually hits when the Sarcoidosis takes over. Those times when I think to myself: “I used the be fun” and try to laugh. Luckily mood is fairly high right now, but I worry for when I get under 10 mg. My mantra has always been ‘mind over body’ as I’m born hypermobile and have been working out like a horse since that was diagnosed as a teenager to get away having to much trouble from that. Seems like my body is trying to win over my mind this time around. And damn I hate it.