Gillian, I'm sorry, but I had to laugh with your expression  of seeing
beyond the "crap" that is hitting me.  One reason I started the blog was to
tell the stories and events that our children missed out on, either by it
being before their time, or so early in their childhood, they do not
remember them, for you see, we've had our unusual share of "crap" in our
lives.  There are not many kids in high school who get told in their junior
year by one of their teachers that they needed to will their body to medical
science.  What?  A 16, 17 year old girl at the time?  I laugh at what all I
had already been through at that time.  My mom was told I shouldn't have
children because I would not be strong enough to take care of them.  She
didn't tell me that until I had already had three, and her twin sister was
getting worried, and finally stuck her nose into our business and said
something to us..... I'd had three children in five years, and I think she
thought maybe I didn't know what caused it.  LOL  I loved being pregnant, I
loved having babies, and all my babies at that time were still very
manageable, or at least I knew how to manage them.  On top of having the
babies, we were moving from one base to another between each one, a new baby
being born at each one.  hahaha  What a way to keep up with where all you
have lived, huh?  We put a stop to that, though because the RA did cut into
my caring for them.  The birth of the first baby in Izmir, Turkey, began the
RA.  I'm not a good one to counsel young adults on letting current events,
situations stop them from doing, pursuing their dreams of the moment.  Poor
Jim.  And I mean that with all sincerity.  He has always been one who has
needed the security of "things not changing."  Me. "Oh, give me land, lots
of land, Don't fence me in."  This is some of my personality I intend to put
into my blog for my children.  All they know is the "straight and narrow"
mom who cowered to society's expectation of a Southern woman, and *I*
believe suffered physically because of it.  That is a full subject for
another time.  I would not change my heritage for anything in the world, for
I am who I am today because of who I was back then.

That has to be the longest run-on paragraph, so I hope you can decipher
it..... LOL  My ninth grade English teacher who died last week taught me
better than that.

Dreams?  Some in my family would say that is my weak point.  Some would say
I am never satisfied with what is today, what I have today.  I don't know.
However, if I were not made of this stuff of change, of looking at the
future for whatever new it held, of feeling the excitement of virgin
territory, I'd never have made it with three babies in tow, following my
husband half-way around the world to a country that the first time we went,
was not much further developed than America was at the turn of the century.
A bit of exaggeration, but not very much.  Where it came from that I was
never afraid to try something new, I will never know.  My sister is much the
same way, though without a bunch of kids thrown in the pot.  LOL  In fact,
it was seeing me with all I went through with the three of mine, and moving
as we did, that convinced her she never wanted to have children of her own.
In deed, when they were younger, she did join me in many ways of helping me
out with them.

Gillian, someone HAS to have a dream for a better world without MG.  There
are only two ways to cope with MG.  Succumb to it, and let it get the best
of you, or take control and you get the best of it.  I cannot say I have the
best of it........ YET.  That is what these treatments are for.  We are
looking for whatever  works for me.  It is much like our diabetes control,
except that we do not have as many choices as we do with our diabetes.  When
I told my pcp about a new drug that is coming down the pike, in testing now,
his comment was, "Now if we can just keep you alive until it gets here."  He
was half joking, half serious.  Without control, my disease is more
dangerous for me.  But, Gillian, I also look at it this way.  I have no
other way to contribute to ridding our world of MG, so putting my life out
there for the world to learn from (hey, I'm not saying *what* they'll
learn!) is really a small thing.  Yep, it is hard, but with support from
people like my asd family, it is getting easier each day.  Just the fact I
was able to put those pictures up for all to see today said a lot of how far
I have come.  I've always been so fastidious, slim, neat and proper you
know.  I've never looked anything like these pictures until the last few
years, and I have had a hard time emotionally with my body change.  hehehe
I think my psychologist would be proud of me.  I think maybe I am proud of
me.  Not in a boastful way, but in a ...... oh, what is the word I'm looking
for..... I've thrown off some of the old ways that bound me, and have been
set free to be.

Yes, dreams for a better world, and we all can contribute to one in our own
ways if we would just stop and take the time to find out what and where that
is.
Thanks for those vibes, my dear friend.

http://www.caringbridge.org/cb/viewHome.do

Ragdoll Billie on the Road to Remission
http://andlifegoesononedayonestepatatime.blogspot.com/
http://www.caringbridge.org/cb/viewHome.do

Striving for a world without Myasthenia Gravis
http://d21c.com/CrossStitcher/MyastheniaGravis.html
http://www.myasthenia.org/amg_whatismg.cfm

Oh, NIcky, thank you very much.  That is a picture Jim took with his cell
phone one day as I had made a trip through Dillard's, one of my favorite
department stores, located in our newest mall in Memphis.  They have benches
just outside the entrance to the mall, and he had allowed me time alone
since we both had phones and I could call him if I needed him.  Even short
time of being by myself helps on the independence bit.  I had just rolled up
to him, and we were talking when he snapped his phone.   In our family,
we've gotten used to being shot by the cell phones!

I don't know, I think I was saying that to say that that was not long ago,
after the affects of the treatments helping my eyes.  See, I didn't even
realize it was already in effect.  Thank you for your validation.  This is
how my doctors evaluate me in the hospital, is by my eyes.  How *I* do it in
conjunction with my eyes, is how well, how clearly I can see.  I was missing
the boat all along!  And I thought they were just going by how much I could
lift my eyelids.  I am amazed.  Amazed at what other people see.  This is
what bothered me whenever I found out I had been going around looking like a
grouch for those years.  Sometimes I just squint my eyes simply because I
can do it, and now they actually do respond.  Funny way to encourage myself
to keep going....... hahaha

Here is a picture of Matthew you can share with the kids.  Was it just last
year they were interested in him at the birthday party?  I lost all
correspondence like that when I gave that computer a drink of Crystal
Light.... *s*
Just follow this link to see the photo:
http://www.flickr.com/photos/14631798@N08/2184011206/

(If the link doesn't work, try copying and pasting it from this email into
your browser's address bar.)

Ragdoll Billie on the Road to Remission
http://andlifegoesononedayonestepatatime.blogspot.com/
http://www.caringbridge.org/cb/viewHome.do

Striving for a world without Myasthenia Gravis
http://d21c.com/CrossStitcher/MyastheniaGravis.html
http://www.myasthenia.org/amg_whatismg.cfm