Quote:
Originally Posted by Scots Kat
Hi Erin,
Yep, I've got all the sexy side-effects you've mentioned - major moon face, swollen belly, facial hair, and massive stretch marks all over, luckily I've not had the emotional symptoms - no craziness yet (maybe I should warn my husband though). It's frustrating because I'm so grateful for being able to move around without help, but mad about how I look. I know it shouldn't matter, but as a 29 year old woman why do I have to choose between functioning normally and looking human!?! I feel guilty too all the time because I know there are people so much worse off than me, not just with MG but cancer etc etc, but why can't I be healthy too?!? My husband has only been to the doctor once in all the time I've known him and that was when he broke his hand playing football!
I know what you mean about not being recognised - my husband and I live in Scotland and we just came back to Canada for a visit this week, when I got off the plane my mother in law barely knew me - she burst into tears. My parents were more prepared because they've seen the swelling gradually get worse on our webcam. Now that I'm back in Canada I find myself not wanting to leave the house because I'm embarrassed at how I look and I don't want to run into old friends who don't know I've been not well this year. I've never been a superficial person, but I certainly sound it now!! Sorry for complaining!!
On to your questions - I was diagnosed about 6 years ago. Looking back at photos I've had droopy lids since about 16 and I have another eye condition which causes double vision so I didn't pay any attention to that symptom. When I was diagnosed I didn't show any signs of an abnormal thymous so I've not had a thymectomy - although I really want it re-checked. I LIVE on mestinon!! I take 60 mg every three hours and on my non-steriod day I find I am counting the minutes until I can take my next dose. I can really feel the difference on the alternate days. I'm also taking Azathioprine (150 mg daily) and it seems to be kicking in now - it took about 7 months to start working. I've had one dose of Ivig, but it didn't do too much for me - in fact I was pretty well knocked out for a week.
It's nice to share stories and experiences here - I figure if I can laugh about some of this stuff then I won't cry!! All the best!
~Kathy
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You know - if you can't complain about the side effects of steroids here, where can you?
I think it's important that we recognize that we are no saints. As women of course we want to look attractive (and I guess guys want that too). When we were healthy, I bet we didn't pay more attention to our looks than others, but with moonface and facial hairs on top of not being able to walk etc. etc. - it's just not fun.
I've often tried to tell myself that I'm lucky for being more healthy than others, but that doesn't mean I feel good. Should we make some kind of graded list so only people on top of the list are allowed to complaint? "You only have 2 broken legs and a broken hip - it will mend so you are not allowed to complain or feel sorry for yourself".
Honestly, I think we will do better if we allow ourselves to get angry / sad / etc. once in a while. The trick is not to be so all the time. But letting some steam out now and then is better than building it all up inside because we
ought not to feel like that (says who anyway? - if anyone actually says so, they are probably amongst the ones who never had anything but a cold in their whole life).
It's hard with inlaws, I think. I got ill only ½ year after I met my husband, and since then it has only gotten worse. My mother in law once admitted that ofc. she would rather have had that her son had fallen in love with a healthy woman, and now - as a mother of a son - I must admit I feel the same. I
would be sad to see him love someone ill, because it does put a stress on the relationship, so it's not her being mean, she is just a very honest person. She also said that she likes me, because she knows I love her son like no one else, and I support him in my own way as no one else can. And that last part I try to remember when I feel embarrassed or sad about being ill. So maybe your face is big now - inside you are still that gorgeous woman your husband fell in love with! And no one else can love and help him through love like you can!
And btw the facial hair can be removed with laser - I've had that done and it works so good. And never was I more happy than when I could stop looking for those big, black spiderleg-hair in my face in the morning, so I could get rid of them before anyone saw me.
