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Old 11-01-2013, 04:20 PM   #1936
pannm
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THANK YOU SOOOOO MUCH, Tiggspring!!! You have no idea how much your response means to us. Instead of just sitting here not knowing what to do, we have things to think about and try. We, too, are at the point where we'll try almost anything just to see if it works! Of course I will talk to her Dr. about all meds and natural things, just to make 100% sure that we can try them.

I loved your idea about getting her out of the house- trying a few minutes each day (or 4 -5 times a week) to get her out of the house. I think that will definately be something we start A.S.A.P. We'll start small and work up to Disney. Thanks for the RIDEMAX recommendation as well- I was just starting to do some research on finding something like that!

I, myself, have been very nervous about this upcoming trip and I've been doing a lot more different types of research than normal. This trip just feels 'different'. I haven't let her know or see that I am nervous at all. I know it would make her go into a tail spin. She is 'excited, but cautious.' and I think that having her help with planning will definately make her more relaxed.

Her digestive system is extremely sensitive to dairy, which would be a huge help to gain some healthy weight. Everyone tells me to find high in fat ice creams, milk and all that stuff...it's a no go there- but I have been giving her smoothies made with coconut milk, bananas and chocolate. She loves those. It reminds her of a yummy drink we had on vacation a few years back. Coconut, chocolate and banana...YUUUMMMMMYY!
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Old 11-01-2013, 07:24 PM   #1937
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Originally Posted by pannm View Post
THANK YOU SOOOOO MUCH, Tiggspring!!! You have no idea how much your response means to us. Instead of just sitting here not knowing what to do, we have things to think about and try. We, too, are at the point where we'll try almost anything just to see if it works! Of course I will talk to her Dr. about all meds and natural things, just to make 100% sure that we can try them. I loved your idea about getting her out of the house- trying a few minutes each day (or 4 -5 times a week) to get her out of the house. I think that will definately be something we start A.S.A.P. We'll start small and work up to Disney. Thanks for the RIDEMAX recommendation as well- I was just starting to do some research on finding something like that! I, myself, have been very nervous about this upcoming trip and I've been doing a lot more different types of research than normal. This trip just feels 'different'. I haven't let her know or see that I am nervous at all. I know it would make her go into a tail spin. She is 'excited, but cautious.' and I think that having her help with planning will definately make her more relaxed. Her digestive system is extremely sensitive to dairy, which would be a huge help to gain some healthy weight. Everyone tells me to find high in fat ice creams, milk and all that stuff...it's a no go there- but I have been giving her smoothies made with coconut milk, bananas and chocolate. She loves those. It reminds her of a yummy drink we had on vacation a few years back. Coconut, chocolate and banana...YUUUMMMMMYY!

I will try to remember to ask my nurse friend who has a son both dairy and wheat intolerant what she recommends...I dont see her til next week.


BTW where do you plan to stay and how do you plan to transport in/out of parks? Those two things will play a big part in how you plan everything else.
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Old 11-03-2013, 01:24 AM   #1938
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Was only able to skim for now and hope to get a more detailed answer for you soon for your DD but it does seem that tigg was able to get your some wonderful ideas.

I think a medication detox is definitely in order. I have an aunt who's son was diagnosed very young and with all the meds he became bedridden. They recently took him off everything and he took his first steps outside in five years!

For pain I take ibuprofen and vicodin. That's pretty much it.

Does your daughter take a muscle relaxer? Maybe that can help with some of the muscle tightness.

I think chiropractic and massage will be great! I have had great results.

Exercise can help. It's hard to find the motivation when in pain but things like yoga and walking at least get you moving and can make you feel a little better. Just don't overdo it like I tend to do. Lol.
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Old 11-03-2013, 07:49 PM   #1939
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Hi everyone:

Tigg: I am SOOOO happy to see you!!

yoopermom: Welcome! I hope your surgery goes well and that you have a quick recovery.

pannm: I am so sorry for what your DD is going through, and I can't imagine how bad and scary it is for someone so young, or her you her mother. Wish I had some good advice, but what others have posted here will hopefully be of some help to her.

mommasita: How is your cousin? Any word on when you will have your shoulder surgery?

rosanab: How are things with you?



ME: Had to work 8 days in a row; yesterday was my first day off. I've crashed big time; spent most of yesterday in bed and had to call in sick to work today. Slept all afternoon, and got a load of laundry done and put away, that's about it. Hoping I feel ok to go to work in the morning.

Wish I felt better so that I could type out better replies to everyone. Sorry.

Gentle hugs and pixie dust to everyone.
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Old 11-03-2013, 07:55 PM   #1940
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We're staying at at the Port Orleans-French Riv. and we have our own car. In the past, we've done all Disney transportation, because we've had to fly there. This time we are driving. Which makes me nervous in itself, because she gets very restless!!!

We did a complete wipe out of all medications about 6 months ago. We have been slowly adding them on as she needs them. She took 8 medications 6 months ago. They didn't work well together and she wasn't feeling better- so I put my foot down with the Dr. We had to do it slowly and need to add back slowly. Lately, she's had so many 'side effects' and issues that the Dr.s seem to be trying to treat the symptoms.

Dr.s gave her some stretching excersizes to do and we go for a walk on days that I can actually get her to leave the house....we're working on it though.
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Old 11-03-2013, 10:10 PM   #1941
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Originally Posted by pannm View Post
We're staying at at the Port Orleans-French Riv. and we have our own car. In the past, we've done all Disney transportation, because we've had to fly there. This time we are driving. Which makes me nervous in itself, because she gets very restless!!!

We did a complete wipe out of all medications about 6 months ago. We have been slowly adding them on as she needs them. She took 8 medications 6 months ago. They didn't work well together and she wasn't feeling better- so I put my foot down with the Dr. We had to do it slowly and need to add back slowly. Lately, she's had so many 'side effects' and issues that the Dr.s seem to be trying to treat the symptoms.

Dr.s gave her some stretching excersizes to do and we go for a walk on days that I can actually get her to leave the house....we're working on it though.
Sounds like you are taking good steps I know it can be very hard and frusturating.

It's sad to say but a lot of doctors do not have an understanding of many ailments out there so they just perscribe medications to treat each new symptom and before you know it your taking 8+ medications! I put my foot down at 3 and I am no longer on any of them. I do not like taking mediation so I only take it when I need it. I have a muscle relaxer for when my muscles get too tight and I take ibuprofen or vicodin as needed for pain. I was put on all sorts of antidepressants and stuff in the beginning and I swear I was falling asleep EVERYWHERE! Now I can at least treat this caffeine But again I only take it when I absolutely need it. So if I'm at work and feel about ready to fall on my face I will take a 200 mg tab or go buy a cup of coffee from McDonald's :D

I am not a conservative person at all. Haha. Just gonna be honest and put it out there. There are strains of medical marijuana out there that have been proven to help with pain relief. They are high in something called CBD and low in THC so "supposedly" you do not feel the high but you get the pain relief. I have absolutely NO interest in smoking but they do make chocolate bars that I have actually seen used to help children with autism. I know this is a controversial subject and is not for everyone. It's just something that I started looking into and thought I would share for anyone that may be interested My grandma actually uses a topical cream to help with her arthritis made from the oil. Haha.

I really hope you are able to find what works for your DD. I think a healthy dose of Disney definitely helps GOOD LUCK!
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Old 11-03-2013, 10:17 PM   #1942
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Originally Posted by SeaSpray View Post
Hi everyone:

Tigg: I am SOOOO happy to see you!!

yoopermom: Welcome! I hope your surgery goes well and that you have a quick recovery.

pannm: I am so sorry for what your DD is going through, and I can't imagine how bad and scary it is for someone so young, or her you her mother. Wish I had some good advice, but what others have posted here will hopefully be of some help to her.

mommasita: How is your cousin? Any word on when you will have your shoulder surgery?

rosanab: How are things with you?



ME: Had to work 8 days in a row; yesterday was my first day off. I've crashed big time; spent most of yesterday in bed and had to call in sick to work today. Slept all afternoon, and got a load of laundry done and put away, that's about it. Hoping I feel ok to go to work in the morning.

Wish I felt better so that I could type out better replies to everyone. Sorry.

Gentle hugs and pixie dust to everyone.
Things have been pretty good actually. The BF and I went to see a concert on my birthday (Halloween!). It was music from the Tim Burton movies featuring Danny Elfman. He actually came out and sang some of the songs from Nightmare Before Christmas. It was really cool

My wrists have been hurting like CRAZY. The weather is finally leveling out to cold so my joints are definitely starting to feel it. My wrists are especially hurting. I always wake up in a position where I have my hand bent in under my chin so my wrist is in a horrible strain every night. I might have to try wrapping it or something to keep myself from doing it. I also always bring my knees into my chest almost like a fetal position which put tremendous strain on my lower back :/ Stupid body! Why can't it just stay still all night?! lol

Other than that things at work have been slightly better as well as things at home so really can't complain

Hope everyone else is doing well! Much love and many pain free hugs to all!
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Old 11-05-2013, 09:28 AM   #1943
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Originally Posted by rosanab1031 View Post
Was only able to skim for now and hope to get a more detailed answer for you soon for your DD but it does seem that tigg was able to get your some wonderful ideas.

I think a medication detox is definitely in order. I have an aunt who's son was diagnosed very young and with all the meds he became bedridden. They recently took him off everything and he took his first steps outside in five years!

For pain I take ibuprofen and vicodin. That's pretty much it.

Does your daughter take a muscle relaxer? Maybe that can help with some of the muscle tightness.

I think chiropractic and massage will be great! I have had great results.

Exercise can help. It's hard to find the motivation when in pain but things like yoga and walking at least get you moving and can make you feel a little better. Just don't overdo it like I tend to do. Lol.
Totally agree on the detox! So many of us have more issues with meds than disease.

Quote:
Originally Posted by SeaSpray View Post
Hi everyone:

Tigg: I am SOOOO happy to see you!!

yoopermom: Welcome! I hope your surgery goes well and that you have a quick recovery.

pannm: I am so sorry for what your DD is going through, and I can't imagine how bad and scary it is for someone so young, or her you her mother. Wish I had some good advice, but what others have posted here will hopefully be of some help to her.

mommasita: How is your cousin? Any word on when you will have your shoulder surgery?

rosanab: How are things with you?



ME: Had to work 8 days in a row; yesterday was my first day off. I've crashed big time; spent most of yesterday in bed and had to call in sick to work today. Slept all afternoon, and got a load of laundry done and put away, that's about it. Hoping I feel ok to go to work in the morning.

Wish I felt better so that I could type out better replies to everyone. Sorry.

Gentle hugs and pixie dust to everyone.
Sorry about that long work run! I cant imagine how you managed that.

Quote:
Originally Posted by pannm View Post
We're staying at at the Port Orleans-French Riv. and we have our own car. In the past, we've done all Disney transportation, because we've had to fly there. This time we are driving. Which makes me nervous in itself, because she gets very restless!!!

We did a complete wipe out of all medications about 6 months ago. We have been slowly adding them on as she needs them. She took 8 medications 6 months ago. They didn't work well together and she wasn't feeling better- so I put my foot down with the Dr. We had to do it slowly and need to add back slowly. Lately, she's had so many 'side effects' and issues that the Dr.s seem to be trying to treat the symptoms.

Dr.s gave her some stretching excersizes to do and we go for a walk on days that I can actually get her to leave the house....we're working on it though.
I got so lucky this w/e and have something you definitely need to look into. Its a therapy tx that I don't normally think of since it was in the early stages of research but no training available to therapists until 5+yrs ago. I was hanging with a bunch of moms at a scout event. One of their DD has had major issues with anxiety around issues of others being sick on or near her. Really turned into a phobia. She was doing tradition therapy for a few months with minor progress. She switched therapist and got someone who does Cognitive behavioral therapy (CBT) which is what I used most...changing how you look at a situation to take control of thoughts feelings etc. This therapist has added rapid eye movement therapy and tapping therapy to the weekly sessions. After just three weeks of tx this child was on a plane and noticed barf bags and Mom went "oh no" in her head but said nothing. The DD read about them asked mom a few questions then said nothing..no meltdown and got through entire flight with not a word. Mom noticed she was tapping her foot here/there but said nothing. The next day DD said did you know I was nervous on plane? Mom said nope you didn't tell me. That was the extent of the incident that would have caused full on meltdown and days on anxiety just a few weeks before. I have heard good things about these tx but have never talked to a PT who used it. Now I cant say I have. My DH has heard great things too. One of his jobs is quality assurance of an agency with 300+ employees. He has heard good things especially with rapid eye movement therapy with his therapists. Unfortunately he has not had time to get trained himself since he doesn't do direct therapy any more and has been quite busy with his PHD. Here are two quick links http://abclocal.go.com/kabc/story?id=8738726 http://www.webmd.com/mental-health/emdr-what-is-it
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Old 11-05-2013, 10:43 AM   #1944
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We loved POR both 20 yrs ago when we got engaged there and last fall when DD9 danced at the Christmas Parade and our group was assigned there. You will need your car though. You can get a plug in heating pad that may make her more comfortable and I linked a few other items below too.

Below is a post of how I survived our trips some will apply to your DD in the respect that the more things you have planned out the less she will be impacted by the chaos of unpacking etc. We all have only so many "energy dollars" if she uses them searching for her clothes or even watching the family be chaotic while getting out the door it will use up her energy. I know it does mine. I think you will be glad to have the car. Buses just are too much for me. Do you have a handicap plate? You can be 20ft from the gate at Disney studios which for me is the most difficult park. It is hotter and more crowded streets. I always have trouble there. I HATE using my plate. Actually let mine expire much to DH chagrin but it is a must at Disney. Having menus/snack thread to review while in line was a big help then we just ordered with no fuss when we got to restaurant , taking shower morning/night and holding off on pain/muscle meds for couple weeks then taking them religiously on trip really helped. I get tired from vicoden so I take half dose and add 2 Excedrin your DD CANNOT take Excedrin but you can talk to Dr as to what you might add to a lower dose of vicoden so she needs less since you said it makes her tired. I only use relaxers at night but did use Ativan during the day as a relaxer and took 1/2 prescribed dose. I also have to take caffeine specifically cola with my pain meds. They just work better depending on your DD caffeine may/may not be a good idea. I definitely wouldn't later in day since that would probably keep her awake. I tell you this not as directions but to see how I must manipulate my meds to take full advantage. Med management and Energy management are key. I chose not to use a scooter because it makes me feel like I'm not on vacation. Its a constant reminder of my illness so I stay at Poly, no buses, work the parks a section at a time to avoid using scooters. Others here are on meds that cannot be manipulated and LOVE their scooters and couldn't do it without them. You DD might like/need one too. We are all so different. Sit down and think of all the things that might tire her out and all the meds your DD takes. Develop a plan to minimize stress like putting clothes out night before. Having cereal/ juice etc in room so you can eat before you leave or anything else that will lesson stress for your whole family. What meds can you pull her off before trip so that it has maximum their effect one you are there? Can you add something like Benadryl which can act like a sedative/relaxer? Can you half a dose of a prescribed med then add something over the counter to give the prescription a boost? Most people don't think you can mix pain meds you can but you must make a plan with a Dr to make sure you are not getting too much acetaminophen etc. It is very easy to over/under dose a child because of their weight/metabolism. For us excessive planning was key. Then we didn't give it another thought. Once we were on the road it was magic.



Oh a thought about rides. The rough ones like Dinosaur and space mountain you may want to schedule 1/2-1 hr after she takes her pain meds. They can be rough and she is less likely to notice this if she has full pain protection from her meds when she rides..let her enjoy the ride forget the pain

As for the trip down here is a great site for activites
http://www.momsminivan.com/

We use seat belt snoozers. They are L shaped pillows who attach to the seatbelt. We all use them...except for the driver LOL http://www.momsminivan.com/kids_travel_pillow.html

If your DD get hot or you want something cool for migraines bring a neck cooler in a ziplock. add ice water and your DD will be good for awhile http://www.ebay.com/sch/items/neck+c...=neck+coolerre are some example at ebay including some Disney ones







Momma how are you and your cousin?


Someone posted about an upcoming surgery... How did that go??


Sending pain free vibes and pixie dust to all













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Dana

As far as Disney I was determined to not use a scooter last year. I wanted my vacation to be a vacation from everthing including the Fibro ( I know wishful thinking). Looking at a scooter after ever ride would have ruined the magic so I planned to the extreme and it worked for a week and then I crashed for several and it took months to get back on my feet. I know he two week crash was due to the trip. Not sure what casues the next 9 months.

The top two things that helped were staying in May because I'm intollerant of heat/cold and staying in Tahiti at the poly so I could get back to the room quickly to allievate a migraine or crash. Extra driving and/or busses is just too much for me over 7 days. I see you going in May so that a big plus

These things helped me. 1. I packed a month in advance and stayed in bed as much as possible the week before we went. So I was not stressing about bags the week before we went or over exerting myself. Since we went in May I bought all of our summer clothes shoes and just packed them right away. 2. Each kid even my 4 yr old had a fanny pack with a fan mister (hanging outside), drink, snack ,hand wash, autograph book and pen, penny press book, neck cooler and map. This kept everyone independant and stopped mom from searching for everything every time someone needed something small 3. USE RIDEMAX!!! I cant say enough about this program. We waited on average 5 min. It was right on the money and the kids didnt fight all week! each kid gave me their must see rides for the day and they new the list would avoid lines so they didnt fight over who got to pick the next ride and Mom and Dad didnt "play favorites" because it was the list that told us where to go. It basicly keep us moving for 5min standing for 5min then the ride or show. This pattern really kept me from getting too tired and too stiff Priceless on so many levels.4. To avoid exhastion I planed to do one side of the park per day. On the day we went to Adventure land we took the train at opening and since I'm slow we arrived in the same amount of time as it would have taken to walk .5. ( you might not want to do this) I pulled myself off my pain meds the month before I went because they stop working after awhile. by doing this they worked much better on my trip. I also got some stronger meds from my DR in case of an emergency 6. we kept a link to all ears menues and the Dis snack thread on our black berry. while we were in line the kids would decide what they wanted to eat then there was no meltdowns while dinning and we got our meals much faster. You could also print them out. 7. we were a bit fanatical about purell on/off rides and clorox wipes on remotes/doornobs in the room. I knew several people who went last May all got sick but us so it must have worked8.We laid out all the clothes the night before so Mom did'nt have to go looking in the AM. I could take a shower every morning as well as every night to avoid stiffness. Our biggest problem last year was packing back up so this year we are ging to AK our last full day so we have a bit more time in the hotel room. I am also planning to put each days dirty clothes in a large ziplock then having DH put them in an empty suitcase in our van every am before we go out. The Handicap parking is really close to Tahiti so we pass it any time we go on the ttc and we will be mostly packed by Fri!

Really it came down to obsessive planning based on my Fibro and my kids habits.

hope this helps!
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Old 11-07-2013, 12:15 AM   #1945
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Hi all. I read everything, but the lights don't seem to be on.

I really caught 8 days in a row .. I can't possibly imagine..


My cousin is fighting the fight.. Still looking for a miracle

Things are a little rough here. I managed to pinch a nerve in my neck, and muscle spasms all down my shoulder (the supposedly good one)..
Still waiting on an MRI with contrast. I forgot to fax the paper ..

We are in BIGTIME renovations, and our house looks exactly like the money pit... DH is doing it alone, and this week is off, so we are looking at ideas.. Right now the walls are down, the cupboards are down... Living in dust. I have to keep my eye on the prize, and one day it will be done..


Gentle hugs all around

Oh, my SON GOT HIS LICENSE.. MOre grey hair
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Old 11-07-2013, 09:31 AM   #1946
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Hi all. I read everything, but the lights don't seem to be on. I really caught 8 days in a row .. I can't possibly imagine.. My cousin is fighting the fight.. Still looking for a miracle Things are a little rough here. I managed to pinch a nerve in my neck, and muscle spasms all down my shoulder (the supposedly good one).. Still waiting on an MRI with contrast. I forgot to fax the paper .. We are in BIGTIME renovations, and our house looks exactly like the money pit... DH is doing it alone, and this week is off, so we are looking at ideas.. Right now the walls are down, the cupboards are down... Living in dust. I have to keep my eye on the prize, and one day it will be done.. Gentle hugs all around Oh, my SON GOT HIS LICENSE.. MOre grey hair

Momma,

So sorry about your shoulder. I cant even handle my day to day clutter cant imagine a reno!!!



I'm really struggling....more frustrated than anything. My back is great. Down to once a week Chiro and plan to drop a few weeks over Christmas. My kids are out 16days! The problem is fatigue. I just cant get moving in am. Get a bit done in early afternoon but only get about an hour then have to stop or I get hot flashes from perimeno so need to take a shower before going out into the world to chauffeur the kids.. My memory not good either. Now that I'm not in pain I JUST WANT TO GET SOMETHING DONE! Ok rant over.

Things so much better than weeks of being in pain sooo bad I couldn't breath so I really shouldn't complain.


Hope those of you facing surgeries and other difficult times are on the mend.


Can you believe its November???? Im still getting used to writing 2013 on my checks LOL!




Sending pain free vibes and Pixie dust to all!
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Old 11-07-2013, 01:29 PM   #1947
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Can you believe its November???? Im still getting used to writing 2013 on my checks LOL!
I KNOW RIGHT?! Lol!

It's been a hard week. The wind kicked up and just sent me through the ringer. With the vertigo and allergies I just wanted to die on Tuesday.

The last two morning I have been late to work. Yesterday my shoulder hurt so bad everytime I moved so I just kinda hung out in bed until the pain went down at least a bit. This morning my dumb butt forgot to set the alarm The one good thing about my job is they don't really care what time I get in. I just kinda fudge the time on my sign in sheet so I don't get in trouble with my supervisor

I'M GOING TO CLUB 33!!! We have a reservation for December 1st and I am so excited I think I may explode! It's been at the top of my bucket list for years now and I am so excited to see the original before it closes down in January for major renovations

Nothing else going on here! Hope everyone else is doing well!

Much love and many pain free hugs to all
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Old 11-07-2013, 08:41 PM   #1948
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I KNOW RIGHT?! Lol! It's been a hard week. The wind kicked up and just sent me through the ringer. With the vertigo and allergies I just wanted to die on Tuesday. The last two morning I have been late to work. Yesterday my shoulder hurt so bad everytime I moved so I just kinda hung out in bed until the pain went down at least a bit. This morning my dumb butt forgot to set the alarm The one good thing about my job is they don't really care what time I get in. I just kinda fudge the time on my sign in sheet so I don't get in trouble with my supervisor I'M GOING TO CLUB 33!!! We have a reservation for December 1st and I am so excited I think I may explode! It's been at the top of my bucket list for years now and I am so excited to see the original before it closes down in January for major renovations Nothing else going on here! Hope everyone else is doing well! Much love and many pain free hugs to all

Ok I thought I knew everything Disney but had no idea what this was. Of course I an east coaster so never looked too closely at Disneyland.

How on earth did you get that ressie??? Dont you need to be a member and pay like 10,000? Hope you had a good year and can afford that! Something to look forward to when my DH is a rich, well know researcher
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Old 11-07-2013, 08:43 PM   #1949
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Hope my last post didnt pry too much....I'm really excited for you!
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Old 11-07-2013, 10:58 PM   #1950
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Ok I thought I knew everything Disney but had no idea what this was. Of course I an east coaster so never looked too closely at Disneyland.

How on earth did you get that ressie??? Dont you need to be a member and pay like 10,000? Hope you had a good year and can afford that! Something to look forward to when my DH is a rich, well know researcher
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Hope my last post didnt pry too much....I'm really excited for you!
Oh I don't think its prying at all! :D

I volunteer for Camp Ronald McDonald and one of the volunteers is a member or her family is a member... not sure which one! Lol. Anyway, she made the reservation and invited any of the volunteers to come There will be 33 of us going all together including myself and my little sister
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