conference, update, etc-very long

[Guest guest]

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