Re: conference, update, etc-very long

[Guest guest]

Adrienne

Thanks for taking this on. I really, really appreciate it.

We might be able to use the networking room on Thur. evening. You could

probably call or e-mail the umdf and ask.

Since finding something that everyone can eat could be a problem, I wonder

about people just bringing their own if they want to eat. That way the

number wouldn't be an issue.

Just some thoughts I have.

I look forward to meeting you at the conference and would like to join in a

get together. and her daughter would like to as well.

laurie

> From: moonchild62579@...

> Reply-To:

> Date: Sun, 01 Aug 2004 19:15:15 -0400

> To:

> Subject: conference, update, etc-very long

>

> Hi guys,

> Wow, I can't believe the conference is this week now! I'm looking forward to

> it and meeting those of you going. My mom and I will be coming in on Thursday-

> we probably will be there mid-afternoon I'm guessing. (its anywhere from 4-5

> hrs from here I think and we plan on leaving around 9 or 10 am and I know once

> we get there both my mom and I will want a short nap!) I think we would be

> ready though around 6pm give or take an hour. I know also that they have

> registration also on Thursday for the Conference- its available both Thursday

> from 4-6pm I think and Friday all day. I know we were planning on registering

> Thursday evening so that we can get alittle extra sleep in Friday. I saw on

> Westin's site that some of the meeting/conference rooms that some of them

> arent available in advance but I'm assuming that means that some of them you

> can get when needed without asking in advance, but I dont know for sure. I

> thought that I would give them a call tomorrow once I figured out a rough

> estimate of who all would be coming and find out if anything is available and

> how much it would be. I was thinking everyone that was meeting for this

> Thursday evening dinner or whatever it will be- that we could all donate

> alittle depending on its cost- I know my mom is willing to put some in for it.

> I also know that on Thursday they are having the UMDF meeting for anyone at

> that children's center, so not sure all who is going- know that Shelby said

> she was but not sure if anyone else is signed up for it. Also- since alot of

> us have special diet needs- I'm not so sure about pizza. I know that I usually

> can't eat it and it seems that alot of others might not be able to either. I'm

> bringing some of my ensures/boosts and babyfood/mushy stuff but I was thinking

> we should look into something that those of us who cant eat pizza, if there is

> anything nearby that we could eat. I do have free long distance- so I am able

> to call of these places- hotel, restaurants, anyone on this list, etc. If you

> want to personally email me bout any of this or with a phone number if you

> feel that you can give me any additional info, suggestions, help, etc. would

> be much appreciated. I just don't know how to go about this other than trying

> to find out a rough estimate of people coming, calling the Westin about a

> meeting room and prices and foods available or other places for possible

> meeting. I dont want to do something someone else is already doing also. I'm

> happy to be doing this any everything- but I do have plans for tomorrow

> afternoon and Tuesday afternoon (appts, etc) and Wednesday going to be getting

> ready for the trip but I'm happy to try and help set this up in the next 2

> mornings. I just want this to work out for us all so that we have the best of

> time.

> Geez, I just realized that was one long paragraph! sorry bout that! anyways- I

> hate I havent been able to keep up with the group as much as I used to (I know

> I've said this before but I mean it so much!) I wanted to thank Alice and

> others who gave me info on scooters- I bookmarked those websites and gonna

> show my PT info on them. I know the manual WC isnt gonna work out for long- my

> mom is mainly who pushes me around on it and she seems to get so tired herself

> pushing it around- I feel bad about it. The only other person to really push

> me around other than people at the hospital, etc was a guy I had been dating.

> I dated him for about a month and it was going well the first 2 wks- went on 3

> dates a restaurant and movies 2 times and then we also went on a day trip down

> to his families mountain home (none of these things took much energy) and it

> seemed like everything was fine. He really seemed to care about me and wanted

> to know about mito and even researched it some. I thought he was great how he

> treated me and everything. Well, after 2 wks of dating- it seemed he all of a

> sudden started working more hours. We didnt see each other for 2 wks- one of

> the times he tried seeing me I wasnt feeling well. Well, we made plans to go

> to a cocert a wk after we started dating. This concert was last weekend. I of

> course knew I wouldnt be able to do the walking so we took my wheelchair. He

> was pretty nice- pushing it around everywhere- hills and all, though he kept

> teasing me that I would have to make up for it. Well, the drive home seemed a

> bit quiet but he dropped me off and gave me a kiss goodbye and said he'd call

> me later. This was a week ago- I haven't heard from him since. I called him

> twice mid-week, but he hasnt returned my message. I'm assuming its over, I

> just wish he could let me know instead of taking the cowards way out.

> Another bad thing that happened few days ago- my best friend- one of the only

> ones I got left in this town, decided to turn against me and say she felt that

> I let my disease rule my life and take away my youth. She basically told me

> she thinks its not as bad as I make it out to be and that I shouldnt have to

> use a wheelchair ever and just learn to deal with the pain because there are

> other people out there that use walkers and they are old and weaker, etc. She

> went on about it and I tried to explain it all (she's never really asked about

> mito much). I just couldnt believe how she treated me after I've done so much

> for her over the past 10 yrs, she was calling me selfish because I went to the

> concert I went to with that guy and not her after asking her if we could maybe

> go together- it was beyond my control, I thought that I could of gone with her

> as a birthday present for me but instead that guy bought me a ticket for my

> birthday. So she had to turn the whole thing around and make mito a part of it

> because she knew it was something that affected my life alot. I dont think

> she's gonna be a friend anymore.

> I'm sorry, this is becoming long, I'm about to end it. Its just so many things

> going on and then of course I'm still in a crash. I've started having seizures

> again (after several wks w/o) and more migraines and mild SLEs. Also it seems

> I'm having alot of issues with abdominal pain and swallowing probs bringing on

> breathing problems. I'm just so fatigued all the time now and I think its

> primarily because I'm getting less sleep due to all the pain (neuropathy and

> muscle pain is increased), but I've also noticed my weakness/exercize

> intolerance seems to of increased more rapidly than usual. I'm hoping its just

> the crash and it will get better soon. Thats another thing my friends dont

> understand- how my symptoms have quickly increased and how they can wax and

> wan so much. I'm just so glad to know you all- dont know what I'd do w/o you

> guys and my mom. Without you all- I think I'd feel very much alone. Thanks for

> reading this everyone that did- I know it was long! I just needed to vent

> majorly. Oh, also I do have a new email address- its moonchild62579@...

> But I also have this one until mid-august, so I'll just change over sometime

> before then.

> So, if there is anything I can do to help with a get together for Thursday-

> let me know- I'm gonna go ahead and call the westin about possible meeting

> rooms and prices and what other foods might be avaiable- probably will do that

> sometime tomorrow and will let yall know bout that too. Ok, I'm exausted

> typing this all anyways- so I'll end- I know this is extremely long! Hope you

> all are doing well. Everyone is always in my prayers and thoughts. Welcome to

> the newbies that have come!

> take care,

> Adrienne

>

>

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