Quote Originally Posted by marta View Post

I so totally get that feeling of being completely spent and hearing the 'outside world' give advice on exercise and how to treat your disease. It use to drive me nuts at the beginning, but now I just let them say their thing, knowing full well that it's completely well intentioned, and smile and then ignore them. They're just trying to do whatever they think they can to help. I always say that it's easier being the Weggie than the loving bystander. At least we know we're doing something even if we're on the couch surviving.

I also get that feeling of looking in the mirror while on pred, not recognizing yourself, hating what you see, and then hating yourself for that reaction. I think we're so hard on ourselves. "Don't be so vain Marta", and then your family catches you being disgusted at that moment you catch a mirror glimpse, and you hear "Don't be so vain Marta. Nobody cares." Then you go downtown and see people you've known for decades who can't recognize you from two feet away until you open your mouth and they hear your voice. It sucks. It so totally sucks. I feel like crying just thinking about how much it sucks, but you can't react to it because instantly there is a label of 'pride and vanity' attached to this reaction. Then you hear people say.... "Yeah, well I'm fat naturally, so don't complain." What I want to say is (and I will here because this is a safe space for Weggies) "Yeah, but you didn't go from your normal look, that you've had for decades, to THIS in 3 weeks. You got to get used to how you look over a long period of time. It's not a shock that a stranger is looking back at you every time you go by a mirror." But you can't say that because then it becomes twisted into a vanity thing again. I'm not a vain person. At least I don't think I am. I don't own make-up. I don't spend a bunch of time in front of the mirror. I don't spend a bunch of money on wrinkle cream. I probably should. But I don't. So it really really gets my goat when people tell me not to be so vain when I'm hating my pred equivalent of bad plastic surgery. There. I have vented. Sorry. But anyone who hasn't been on pred and have had their entire body, face, look drastically altered because of it, can't be giving advice on this one. That's why I wanted to post those pics though. Because when you're in the thick of it (ha ha - pun not intended) it's hard to see the other side, and it feels like you're stuck here for ever.

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P.s. 1. I took today for the first time in years only 4mg pred. Going to try first only one day a week with 4mg for a while. Then 2 days etc. Only if I will not get the crazy headaches. I dread them. Thanks for the guidance and inspiration marta ❤

P.s. 2. I am also on budezon for my colitis. It is a much more friendly steroid with less side effects.