Originally Posted by rumpled (Post 432279)

*clap clap clap*
We have the appearance of being ok, no one can look at anyone and see blood tests (even though I do try to point out that my tan and dark knuckles are from my high ACTH) and yeah, I have been told well, you look fine, did great today etc. when I know tomorrow or even later I will pay for trying to look normal and enjoying myself.

Who wants to be sick? I am not quite sure what they expect to see but I have been in SSDI (disability) for a couple of years and got it first try. That would not happen if I was just fine. Yeah, so I do push myself in the rare instances when they come around as I want to pretend for a while too - I know I am going to hurt later. I guess unless there is an obvious physcial manifestation - we need a sick-o-meter on our foreheads (which, by the way, would be most helpful for most docs who are oddly blind too!) so it is patently in front of their eyes.

I still get *well, maybe you will feel better tomorrow* and I roll my eyes - dude, do you not understand the meaning of CHRONIC? Hey, if the health fairy came along and waved her wand, I would dance naked in the streets (no one would like that), but I do not see that happening. I usually say fine when people ask me how I am and some take that, instead of being polite - as I am on my way to health! So if I tell them how I really am, they cannot understand it and if I am polite, they think I am great. No win.

End of rant...ooops.

Originally Posted by littlekitten (Post 431528)

Wow - I just need to put in my 2 cents here...

I like to dwell on the positive. I think of my MG as a 'condition'. My maligant thymoma cancer that came with it (radiation and twice through chemotherapy for it), it too is a 'condition'.

Erin - I think they don't understand how you are well enough to decorate the house for the holidays, host a party for your husband, and go on a cruise, yet not be able to do everything else that isn't as much fun. Please do not take this as an attack. I am merely on the outside looking into your life through the postings here. I have MG too...and I know about ups and downs and crisis situations. But I believe that they see one thing (you having a good time) and hear another (about how you have an 'incurable disease').

I try not to think of MG as an 'incurable disease'. What IS an incurable disease is ALS. From diagnosis to death is an average of 3-5 years. There is no cure and no medication to allow a satisfactory life. Those with ALS end up needing 24 hour care because they are confined to a wheelchair. THAT would be far harder to handle than my MG which can be controlled with medication and other medical advances. I know that I have more than 5 years to live with my disease. (My apologizes to those with ALS who may read this post and any mis-information I may have made).

And yes, you're right on the head when we say we didn't appreciate how good things were before we got sick. But you have to remember how bad it was when you were in crisis, and then think about life now. I guess what I'm trying to say is that it could always be worse, and just take the good when you have it. We never know when luck will come our way and things will turn around.

MissyGirl - You hit it on the head with book about Boundaries. A great read - a MUST own for those of us with the Type 'A' personalities that feel compelled to have to do everything for everybody and never say no. No matter how much I highlight relevant issues to myself, I still manage not to be able to stay true to myself and my own personal boundaries. (I still think it stems from the fact that as girls were were raised to be 'obedient'.)

Rumpled - HAHAHAHA with the Easy Button. I sure understand the inside joke of that. How great you can keep the humor.

Miachris2 - I absolutely LOVED your quote - ..."I really wish this disease was transmittable because I would then somehow find a way to give it to you and then you could then show me how to deal with it because you make it seem so easy". So many times I too wish I could have said something to that effect.

Redtail - Your family sounds great... "C'mon RUN". That sure made me smile. Great way to keep spirits up.

As for me, I too have had my share of 'rudeness' and other adjectives and verbs that aren't fit for print. A few christmas' ago I was so sick with what I thought was the flu. It was over a week of being so weak all I could do was lay on the couch. I couldn't even muster enough strength to go drive a half hour for Christmas family dinner. (Not that I would have eaten, but it was Christmas). So I spent Christmas alone on my couch with my cat.

Now one of my brothers is the type that know everything. Well he stopped by on his way home. 2 hours later I finally put some clothes on and called a cab to take me to the hopsital. I ended up getting admitted for 6 days. Turns out that I was quite anemic from the Imuran. (67 on the hemoglobin scale). So to this day when my brother starts spouting off on me about medical this and that and I should have known better, then I remind him that he saw me 2 hours before I got admitted, and I ask him again ... "Did I look sick enough to you to be admitted to the hospital for 6 days Doctor?" He says no - therefore - enough said. So just because you don't look sick doesn't mean that you're not. Sometimes you need to remind your family of instances where they were rude and un-informed. It brings them back down to earth.

Oh - and I had my share of humorous moments with the MG too. Never having ever been really sick before the MG symptoms started, and then learning that I would be having a 'Cat' scan. Not knowing what it entailed, I was quite nervous. My husband picked up our cat - waved it back it forth in front of me - and said "now you've had a cat scan".

Hey - we take the humor where we can right?

Lydia

Originally Posted by mgmom2 (Post 437043)

I have no support at all except my grandmother who just recently started doing it......but stlil doest understand the disease......my husband I dont' know what his problem is......he has spoken with my doctor, read some literature........but the other day I was having a bad flare up .....weakness in upper ext. and double vision for about 3 weeks.....but siince I was albe to go get my neice a christmas present 2 days before that in the am.....he refused to drive me to the hospital.....and this is jus a mere example...........

Originally Posted by cricket001 (Post 437373)

I haven't really told my family all the problems that I have been having...also, I haven't told work much either....My husband is very supportive and helps out so much. He cooks when I am really tired..He even hired a service to come and clean our house once a week..with 4 kids..it is really tough to do it all....He has been awesome...but I am soooso afraid if I continue to be "sick"..it will get old and he might resent all the stuff he is having to do....I try my best to hide my symptoms...but it is so hard to hide the bruises from falling.......and...the slurred speech has really raised some eyebrows lately....I am going to have to tell them eventually...:grouphug:

Originally Posted by redtail (Post 438626)

I'm heading to the big smoke to visit my brother and his family for a week. We are planning on going to the zoo, which will be no mean feat, considering its summer here, and the temps have been around 37C in Perth. I've decided to hire a wheelchair for the day, and big brother rekons its a great idea. My darling nephew said if Dad gets tired he will push me.....Wow, I think I am blessed having a caring understanding family