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hello julie!

i just wanted to see how your appt. with dr. grubb went and what you decided to do about the EDS issue.

i haven't seen you on the board as much lately and have been wondering how you are doing...and worrying of course (i do a lot of that!)...

i know you are having a very rough time lately...and just wanted you to know we're here for you!

please let us know how your appt. went.

i hope that you were able to get some useful information...i am sure you are wiped out though, as it has probably been a long day!


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Thanks for all your support Emily! Your a great person who has a lot of compassion......and you have been here supporting me though all of this.

I can't tell you what it means to me-----the support from everyone has gotten me through some pretty depressing moments----I'm blessed to have all of you.

I have a lot going on now---some things that I can't really get into.

I am lucky to have the on going support of my husband----and my family has been more supportive lately too.

I started my first cervical traction tonight---and I have one big nasty headache.

Dr. Grubb said my CSF flow is poor---this was based of the report from Dr. Bolognese. I have anterier flow---but poor posterior flow.

BUT I LOOK GOOD>>>>>>>>>>>>LOL

Julie :0) PS--- emily you'll see my other post about my appointment.

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i have to tell you, my hubby got yesterday off, very rare, so we went on a few errands. by the time we got to the grocery store i was walking through molasses. i told dave i was going to the car. i met my daughter in laws mom, so we chatted for a bit, then i said well bye. she asked me if i was driving and i said no i haven't driven in over a year. i was just too tired to stay in the store. she opened her mouth and i said, do not tell me i look great! she said no, i wasn't going to let you drive because you look like h$#%. whoa, stop the press, someone actually saying you look like you don't feel well. just in response to your last sentence julie.... sorry you are feeling so badly. i think i'm glad i'm not going all the way across the country, because as good as these guys are, they still aren't a lot of help a lot of the time. i hope the other things bogging you down clear up soon and am glad you have a very supportive hubby like me. feel better soon, hugs going your way!!!!!! morgan

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I read your other post. Doesn't sound like there is any easy answer. Sounds like a lot of stuff to deal with right now.

Hang in there.

Lately I've been thinking " you know you don't look so good". I think I'm starting to look how I feel. So I guess if you "look good" you have that going for you, when all else fails. LOL.


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oh julie!!! i will write more later.

but i am just getting a kick now out of the off-topic side of this post...how we look...

gayle! i think i always look terrible! i am sooooo pale and have huge circles under my eyes.

if i don't put make-up on and self-tanner i feel like an absolute ghost and am embarrassed to be seen.

i know it is vain, i'm sorry...but it is hard to look at myself some days! somehow, when i look as bad as i feel, it just makes everything worse.

one day, i felt soooo awful but i really needed a haircut. i used all of my energy to get a haircut, b/c i thought it would make me feel better....

but no, she gave me a bad haircut! and it looked terrible. i was so fragile that day that it just tipped the scale for me and i was so depressed.

i can totally laught at myself about this....but honestly, somehow the bad haircut on top of everything else was so miserable. i thought, how, in the grand scheme of things am i so upset about a haircut? my best friend and i got a lot of laughs out of it.

anyway, my point is...i do look crummy a lot of the time. and sometimes i use my precious energy to do "girly things" like paint my nails and put make-up on just b/c it makes me feel human...and sometimes i think that is important!

but, when people see me i always have make-up on and so they are like, oh you look sooo good, blah-de-blah.

my mom and two best friends are the only folks who really "get it" and can see it no matter how much make-up is on. or i won''t bother with it in front of them...anyway, my mom can see the color go from my face as i fatigue and she can see the eyes glossing over and me zoning out, as can my best friends. (yeah, they're keepers, too bad they live far away!)

gayle...you are super-sun-sensitive right? me too, but not as extreme...so i really need that self-tanner or i am sooooooo white. it is scary.

i wish i didn't care how i looked and was not like this, but i do care...is that a bad thing?

okay, i went way off topic...please forgive me julie! i shouldn't check-in right before nap time huh? but it's my favorite thing to do!

hopefully at least you got a laugh out of me....i'm showing y'all my "dark side..." oooohhhh...the dark side of dancing light! ;)

so, julie....i will write something actually meaningful later, i promise, but i am so glad you touched base here...b/c i had that september 22 date stuck in my head and wanted to know how it went. i know a lot rides on these doctors appts!


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The sunless tanner is a must. Streaks and all. I always look healthier with it on so I feel better.

I had to laugh about your haircut story. I've been there. Although I always remined my self in the greater scheme of things a bad haircut isn't so bad on the other hand it's kind of a nice change to worry about haircuts etc..instead of our health.

Hope the Macrobid is helping you and that you are feeling better.


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I just go for the old fashioned victorian look-------pale---and a little blush on the cheeks. LOL If I went in the sun---I would freckle------besides, I can't handle the heat.

Still---even pale----i'm told I look good............even when the blood feels like it's drained out of my body. Must be the chubby cheeks-------good for keeping the wrinkles away though.

Julie :0) :):angry::(

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When people tell me wow, you look good, I answer them that's the least I can do for myself. It makes them think (and hopefully think before they talk). Nowadays I take it as a compliment (because it could be meant that way). I used to feel embarrased and thought that since I'm in a wheelchair I'm not allowed to look good, that's nonsense ofcourse (I know now).

Wish you luck with making yourselves look good! :)


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