Of frogelita you are so sweet, saying you would give me your remicade, hopefully I get it soon and so we can both see how it goes for us! It does feel like its been going on forever,…… when I had that big breakdown at work I ran into a meeting room which was empty at 8 am in the morning and called my dad and just said ‘do you think this is going to be my whole life??’ I couldn’t contain myself, I just kept crying and saying “it just feels like its going on forever!” ……. That was when I still had 12 weeks to wait to apply.
I’ve definitely been very down about it all, and the pain meds were making things ten times worse. It’s been a rollercoaster that’s for sure. I’ve spent most of the year in and out of hospital and surgeries and appointments and I live alone so I had to work the whole time too, and my parents live five hours away…... I just try and stay positive and think “well, I might have a bright red seton and a big ugly tube drain poking out my butt, and a ever-expanding fistula hole, but at least its not an abscess anymore!” I have to look on the bright side and believe that it will be up and up from here. I hope it is. I am sick of wearing panty liners!
I think although this disease absolutely ravages us physically and mentally, it can, in some strange way, make us better people, because we have to ‘grow up’ faster than most. I used to get mad when my co-workers would have a week off for a measly cold and I had a gaping surgery wound and constant diahorrea and pain to contend with every day, but I’ve realised, suffering is relative to the individual – for them a cold is bad, because they’ve never had to deal with anything worse. So they’re sooks. Ha!
The iron infusions have made a world of difference to me, having the energy means I feel more positive and able to tackle this thing. today is a good day, so I am feeling positive. Not all days are like this! I still cry a lot. But I’m working on it
You’re seton sounds awesome!! I want them to tee me up one of those babies!! A string, so easy to clean, and so comfy! You could sit right on it and everything! Sounds great!!! I am so sick of this tube poking out my butt, it grew longer as it was pushed out from the gradual healing and I had to trim it with scissors because it was pulling every time I loved – which wasn’t fun! I guess I’m getting used to it now, I’m anxious about how hard it will be to have it out, and anxious about anything being put in or removed from there….. but we will see.
Oh, a fistula-free life, I can barely imagine it right now!!