My mum has had Myasthenia Gravis for over 30 years. It's an always there thing that you're never quite sure when it's going to poke it's head up and say "oh, by the way, you aren't going to talk without slurring for a week, and that swallowing solid food thing? yeah, not happening."
I didn't realise until recently just how long ago she was diagnosed, because around the same time I was in and out of hospital being tested for 'unknown illness #1', which after 3 years turned out to be Crohn's disease and my parents did a great job focusing on treating me and hiding that mum was even sick.
Enjoy your time on here. I've given you a follow and upvote :)
Thanks. I'm getting teary-eyed. I'm so sorry to hear about your mom and you. It's a downright shizzy thing to be sick - whatever sickness it is. But to have it stay with your forever, it's just effed up. I can't even think of how hard it must be for everyone in your family. Stay strong. Come talk to me in PAL? We're just there. I've linked the pages.
I'm pretty new here. Joined to help out the war effort and to hopefully provide some kind of outlet for my food writing that could earn me money.
I haven't looked into the related chat stuff yet, but if/when I get onto PAL I'll seek you out there.
32 years with Crohn's, just passed 23 years with a bag and being on the DSP. It used to be easier, but I'm working on making it better for me at least, and hopefully others
Followed you so I can keep an update. And because I love food even before I had to go on prednisone. Sorry to hear it's been that long since your battle started but cheer up. You made it that long. I'm not on any disability aid so I have to do some freelancing. I'm here because of a long story which I linked up in the post. Let's keep on surviving!
When you get there, come hang out with me. Stay strong! Send my regards to your family, too.
prednisalone and cortazone (sp?) are 2 things I'm quite glad to be free from. I took one or the other for about 10 years before they were no longer useful treatments for me. Mum's been taking variable doses for pretty much my entire life and it's possibly part of the cause of problems she's got now. Hopefully you're doing well with your battle and don't have to fight with centrelink to survive. Being able to freelance is certainly useful at helping to prevent that though.
I'm fairly resilient though and my happiness levels are pretty decent considering. I've long been of the opinion of at least keeping on surviving, sometimes to a point that my friends have said I'll outlive them all. So far, so good
Prednisolon and cortisone. I'm on varying doses of prednisone (among other meds for MG and various other conditions). It's harder to be perky when your meds are actually documented to cause depression among other mental health issues. But I'm desperately, desperately trying to claw my way out and still believe in fighting. I hope it goes for you and your mom as well (especially her as I know prednisone itself can be a fucked up shit - sorry for the language but there's nothing else to day).
I very much understand the 'I got nothing else today' thing. Depression is horrible. Keep fighting the good fight, and seek professional help when needed. That's why I'm here still.
Mum's time fighting is in it's final straight, but I know she'll keep fighting till the finish line.
It would be nice if all these things and their treatments didn't lead to more things and more treatments too
I hope she holds on for the long haul. And yeah, I agree with
I have additional meds to treat the side effects of the main meds. Horrible stuff