DancingLight Posted September 23, 2004 Report Share Posted September 23, 2004 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!emily Quote Link to comment Share on other sites More sharing options...
Guest Julia59 Posted September 23, 2004 Report Share Posted September 23, 2004 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>>>>>>>>>>>>LOLJulie :0) PS--- emily you'll see my other post about my appointment. Quote Link to comment Share on other sites More sharing options...
morgan617 Posted September 23, 2004 Report Share Posted September 23, 2004 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 Quote Link to comment Share on other sites More sharing options...
Guest GayleP Posted September 23, 2004 Report Share Posted September 23, 2004 Julie,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.GayleP Quote Link to comment Share on other sites More sharing options...
DancingLight Posted September 23, 2004 Author Report Share Posted September 23, 2004 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!emily Quote Link to comment Share on other sites More sharing options...
Guest GayleP Posted September 23, 2004 Report Share Posted September 23, 2004 Emily,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.GayleP Quote Link to comment Share on other sites More sharing options...
Guest Julia59 Posted September 25, 2004 Report Share Posted September 25, 2004 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) Quote Link to comment Share on other sites More sharing options...
corina Posted September 25, 2004 Report Share Posted September 25, 2004 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! Corina Quote Link to comment Share on other sites More sharing options...
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