you don't look sick

[Michael Bell]

glad it seems ok for you Dale, and yes I am always told I look well when I feel terrible all the time.
Mike

[windchime]

Glad it's nothing serious Dale, although it may feel major to you.

Since I was originally diagnosed before my boys were born they grew up knowing I had "a lung disease." Since it wasn't active I didn't pursue it with them. Last year when it reared it's ugly little head I gave them both hand outs (can you tell I used to be an instructor) on Thanksgiving Day when we were all together. I figured if they want more information they can Google it. I can't force feed them. The youngest lives with me so he can see what has happened just in the last 4 months. I think they worry, but know there isn't much they can do.

I have not shared with many people at work why I'm out. Most of them wouldn't care anyway and I prefer to keep my life private from work. The groups that I'm a member of are on my FB page however, and if they choose to check it out so be it.

[Alysia]

Don't look sick and guess I'm not. Doc said probably muscle spasms. Lungs sounded fine,scheduled PFT for next week so he wants me to exercise more. Thanks for thinking of me.
Dale

Don't look sick plus not being sick is the best option
good luck at the PFT.

[Christina32]

I recently enjoyed the spoon theory....I think someone posted it here already... Butyoudontlooksick.com. Excellent explanation of ' a day in the life...'

[Alysia]

I recently enjoyed the spoon theory....I think someone posted it here already... Butyoudontlooksick.com. Excellent explanation of ' a day in the life...'

Thanks your link does not work for me, so I add here another one... great theory.
here is the link: The Spoon Theory written by Christine Miserandino | But You Dont Look Sick? support for those with invisible illness or chronic illness

[Alysia]

a little vent, please ?
I came back from my wg-doc. he said that he beilieve that I will not get anything from the gov because of the wg. (I sent papers to get disablity) "looks how you look like, they will not give you anything"....
what can I say ? grrr.....
and then he continued with writing that I am still smoldering....

[renidrag]

Sorry to hear this Alysia. Is there any recourse or perhaps a more stubborn Doctor? In the States here we can request a hearing to try again. Hope you have something like that.
Dale

[annekat]

a little vent, please ?
I came back from my wg-doc. he said that he beilieve that I will not get anything from the gov because of the wg. (I sent papers to get disablity) "looks how you look like, they will not give you anything"....
what can I say ? grrr.....
and then he continued with writing that I am still smoldering....

That is very disappointing, Alysia. I'm sorry. Doctors can be wrong about these things, so maybe you should still try. But it doesn't sound like this doctor will back you up if they ask him for his opinion. Maybe if you get a lot sicker someday.....? But we don't want that to happen, and that's why you need some help now, to make that less likely. It is ironic. I don't blame you for being angry.

[pberggren1]

I would still try sweetie. It took me 3 tries to get it.

[jakekell]

Alysia,

Been off oh here a few days this is a thread near to my heart after 8 years of this crappy weggies. I also have gained so much weight from meds so now people give me the impression that if I lost the weight I put on all would be better. People don't get it at all and given that they will as nobody knows about this disease. I try to limit the information as those who really want to hear it will look it out on the internet. My husband of 48 years and a sweetheart even forgets that I am not wanting to walk when my legs/feet are swelling up. I think we do look pretty normal, which is the good/the bad of it.

I hope your feeling better by now as it is just tough someday's. VDub's sister-in-law saying "this disease isn't really a big deal" is also happened in my family as my brother-in-law gruffly said to me "so are you over this disease now?" gotta just love them don't you.

Mary