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-   Myasthenia Gravis (https://www.neurotalk.org/myasthenia-gravis/)
-   -   Did it! Off topic (https://www.neurotalk.org/myasthenia-gravis/86926-topic.html)

maryec 05-14-2009 12:39 PM
Annmarie , When I am in crisis & I can't breath, I am totally limp & am not stong enough to pull air in period. Through out the day, doing my daily stuff, when I weaken, I get the out of breath, gasping , you mentioned, I don't believe with MG we are able to breath deep enough with our weakened lung muscles, so we tend to shallow breath to get the air we need, when we do things.
Mary

erinhermes 05-14-2009 11:50 PM
Hey Annemarie!
 
Hey there! Yes, I was literally GASPING for air - couldn't get any and started to black out - decided it was time to call my dr.........

Never want to go through that again!

:hug:Erin:hug:




Quote:
Originally Posted by annemarie (Post 509855)
How thoughtful of you! I finally had my hair cut to a shorter style last summer when I realized that the only "do" I could handle was a ponytail, not so cool on a 42 year old. I took in a picture of Jenny McCarthy and told my hairdresser I wanted to look like her. Well, she can't work miracles, but my hair is short in back and longer in front and I feel sexier than ever. Still a challenge to blowdry and straighten, but only worry about it when I leave the house! Sometimes not even then.

I wanted to ask you about mg crisis. What exactly do you feel like when you can't breathe? Do you gasp for breath? What do they have to do to stop the crisis or can it stop on it's own? Thanks for any info.

redtail 05-15-2009 02:04 AM
Hi Erin,

You have inspired me, as its comming on winter here I will let my hair grow for winter and spring, and get it cut off about December. all I have to do now is find where to donate it here in Australia.

ConnieS 05-15-2009 02:18 AM
Hi Erin,

You're an inspiration! Here's a hug for you for all the children out there!

I've just chopped off my hair recently due to huge amounts of hair loss, will wait for them to grow again (sure hope it grows quickly) and then find a place to donate it!

Quote:
Originally Posted by redtail (Post 510410)
Hi Erin,

You have inspired me, as its comming on winter here I will let my hair grow for winter and spring, and get it cut off about December. all I have to do now is find where to donate it here in Australia.

erinhermes 05-16-2009 02:00 PM
Hi Connie!
 
I bet it will grow back really quick! It has been quite a shock getting used to my new do, but it will grow back! LOL!

People tell me that it looks really cute, but I have a really hard time with any kind of change so I don't love it - yet!

On the positive side, it is much easier to do now!

Big hugs!
Erin:D


Quote:
Originally Posted by ConnieS (Post 510412)
Hi Erin,

You're an inspiration! Here's a hug for you for all the children out there!

I've just chopped off my hair recently due to huge amounts of hair loss, will wait for them to grow again (sure hope it grows quickly) and then find a place to donate it!

erinhermes 05-16-2009 02:03 PM
Hey Redtail!
 
I bet with your curly beautiful hair you will make someone an AMAZING wig!:D

Just to let you know, though, they will braid your hair and need @ least -8-10 inches to make a wig - almost flippied out when I saw how much they needed! It does help out with the Texas heat! In a BIG way!:D

I still freak whenever I go to wash it - used to soooo much more! LOL!

Take care!
Erin:D


Quote:
Originally Posted by redtail (Post 510410)
Hi Erin,

You have inspired me, as its comming on winter here I will let my hair grow for winter and spring, and get it cut off about December. all I have to do now is find where to donate it here in Australia.

erinhermes 05-16-2009 02:08 PM
HEy Annemarie!
 
Girl, you are so pretty that ANY hairstyle would look GREAT on you!

I don't feel sexy - not yet! Still have those pesky 40 lbs to lose........but as long as I feel well enough to do some things for myself I am grateful!:D

When I had my crisis it stopped on it's own - thank GOD for that one! I was blacking out before I was able to catch my breath.....whew!

Usually when someone gets that weak they need to be intubated - something that scares the heck out of me, but I'll take that over the other any day! LOL!

Hope you are having a great day!
Erin:D


Quote:
Originally Posted by annemarie (Post 509855)
How thoughtful of you! I finally had my hair cut to a shorter style last summer when I realized that the only "do" I could handle was a ponytail, not so cool on a 42 year old. I took in a picture of Jenny McCarthy and told my hairdresser I wanted to look like her. Well, she can't work miracles, but my hair is short in back and longer in front and I feel sexier than ever. Still a challenge to blowdry and straighten, but only worry about it when I leave the house! Sometimes not even then.

I wanted to ask you about mg crisis. What exactly do you feel like when you can't breathe? Do you gasp for breath? What do they have to do to stop the crisis or can it stop on it's own? Thanks for any info.

Curious 05-16-2009 02:08 PM
Go to my profile Erin, it has a new picture of my and my granddaughter. Yep..curly hair.

I have a good 8 inches I can cut off. :D

erinhermes 05-16-2009 02:12 PM
HI Steph!
 
You are sooooooo flippin funny! I remember that 90's "do" - cuz' I had one! LOL!

I remember when just blow drying my hair was too much for me......so I went days without washing my hair - not attractive but oh well!

How are you doing today? Are you feeling ok?

Big hugs!
Erin:D





Quote:
Originally Posted by cricket001 (Post 509863)
Erin,

Wow! That is a wonderful gift....When I have to cut mine short..I will seriously consider this. I love my hair...It is all one length and is below my shoulders. It took me forever to grow out my bangs...it was pure torture at times.....but I am so glad that I did....never get those bangs to look right...I kept wanting to "poof" them...and I always ended up looking like a poster child for the "90's hair look:Bang-Head:

I have been just french braiding it here lately...but now....that is getting rough...holding my arms up and braiding all that hair...


Stephanie

erinhermes 05-16-2009 02:14 PM
Hi Curious!
 
The shortest amnt thay can use is 8 inches.......beware though b/c they braid it and that takes a lot off!

It is sooooo much cooler here now that my hair is gone!

Big hugs!
Erin:D
Quote:
Originally Posted by Curious (Post 510096)
YAY! :yahoo:

Now we want pictures!!

Erin, did they tell you how many inches you have to have to donate?

This picture taken Mother's Day kinda shows the length of my hair. Honestly..the color isn't that orange. lol.

http://c1.ac-images.myspacecdn.com/i...d190226a68.jpg


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