Vacation

[Guest guest]

Hi Phil,

Have a good safe vacation and thank you for all the help you've given.

Have fun!!!

Steve

> Hi all I am doing a lot better and will be up north in Mi. for a

> week.

> I hope everyone does good and will miss reading the posts here.

> Phil

[Guest guest]

Phil,

Great to hear you are doing better!!!! Enjoy your vacation! Where in

Michigan are you going?

Mark

[Guest guest]

I guess I spoke to soon I got so sick last night. I was having

panic attacks and breaking out in sweats. I have a bad back and the

stress of the attacks did in my back so hear I am at home alone.

They went without me. There is no way I can sit 5 hrs. in a car

with this shit going on. I sure hope this gets better. I am

socking wet and can't stop sweating. It will be 2 weeks Sunday

since I had a Arimidex pill. And my T. levels are good. Just the

luck of the draw.

Phil

> Hi all I am doing a lot better and will be up north in Mi. for a

> week.

> I hope everyone does good and will miss reading the posts here.

> Phil

[Guest guest]

Phil,

Hang in there buddy. I know too well what it feels like to be left

alone and miss out on activities because of your health problems. I

often send my wife out without me to go do things. I figure she

suffers enough so I don't want to make her sit home all the time with

me. But it can still be really hard to be left alone while you know

others are going on with their lives. Just know that you are not

alone. Email me offlist anytime you want to at mdw1000@...

Mark

[Guest guest]

This trip was to encourage each other and share life experiences. Sometimes I

am not so open to talk anout my life with CMT if my hubby is there, he is a real

worry wart. As far as your trip ideas they sound okay for those who have the

money. I hope you get some takers.

Cathleen

[Guest guest]

Take Care Penny - have fun and indulge a bit for all us

Sam

have a nice time pennybleuOn 30 Jun 2005, at 17:15, penny wrote:> Hi all,>> I'm going on vacation for a while. Please keep up the great> discussions, and while you're at it, find a healing breakthrough by> the time I get back, okay?>> best,>> penny

[Guest guest]

Sorry to hear your troubles. I think that everyone is very different. I took

nearly 3 years to feel any improvement at all with meds. I tried all kinds

of combinations. I am on Enbrel currently. It took about 3 months on that

for me to notice any improvement. I have been on it for 2 years now and I

feel that it has helped me tremendously. I am not the same person I was

before this ordeal. But I feel that I have a handle on a much more normal

life than I expected in the beginning. My stamina is much increased on this

compared to what it was like before I was on it. My insurance company

required me to try many other drugs before they would allow Enbrel due to

its cost. Anyway, in my opinion I feel that when you are on the right meds

you can have more good days than bad I guess. That is the best way I can

think of to word it. There are still days where I wonder what happened to

the " old " me. But then there are other days that aren't' so bad.Good luck to

you.

[Guest guest]

Hi ellen,

THanks so much for the reply. It helps to hear other stories and even

better to get votes of encouragement. At times I do feel down about

my plight, but try not to let it get to me too often. I hope that my

insurance will ok my new meds. I can't take prednisone because I have

had previous bone death, and steroidal treatments can cause bone

death, therefore that's not an option. I just hope my doctor will

explain any issues with my insurance company and I'll be able to move

into treatment sooner because of it.

Thanks again, I hope you have a great day.

Les

>

> Sorry to hear your troubles. I think that everyone is very

different. I took

> nearly 3 years to feel any improvement at all with meds. I tried all

kinds

> of combinations. I am on Enbrel currently. It took about 3 months on

that

> for me to notice any improvement. I have been on it for 2 years now

and I

> feel that it has helped me tremendously. I am not the same person I was

> before this ordeal. But I feel that I have a handle on a much more

normal

> life than I expected in the beginning. My stamina is much increased

on this

> compared to what it was like before I was on it. My insurance company

> required me to try many other drugs before they would allow Enbrel

due to

> its cost. Anyway, in my opinion I feel that when you are on the

right meds

> you can have more good days than bad I guess. That is the best way I can

> think of to word it. There are still days where I wonder what

happened to

> the " old " me. But then there are other days that aren't' so bad.Good

luck to

> you.

>

>

>

>

[Guest guest]

I wish I could help, , but Trey's the same way. I do my best though

and go over the " rules " him before we go out... " Don't stare if someone looks

different...Don't point at people...Don't touch people unless you're shaking

hands and I'm with you...etc, " I'm not sure how long he actually remembers

them so I remind him again before we go into the store (or where ever we're

going) I'm also not sure how much it really helps, but I don't know what

else to do and it feels better than doing nothing so maybe I'm really only

doing it for me come to think of it! lol

I probably shouldn't but I just *had* to laugh at " What is wrong with your

butt? " rofl omgsh How did you handle that? I have no idea what I would have

done lol

-Jenn, AEP (ADD, Bi-Polar, Anxiety/Depression)

Proud Momma of Cory Albert (14yrs ADHD), h Dawn (12yrs

Anxiety/Depression)

and Jerry Lee " Trey " (9yrs ADHD, Bi-Polar, Asperger's)

-- ( ) Vacation

So we are back from vacation.... my son was quite the character (as

usual).

Are flight was delayed quite a bit and my son was already anxious. He

felt the need to talk to everyone in the airport. " Why is your bag

blue, are you going to see your grandma, why are you wearing

shorts " .... and the worst yet " what is wrong with your butt "

It is hard not to get embarrassed... sometimes it is hard not to

laugh (when he asked a woman who was 90+ if she was going to her

grandmas house)...but how can he learn what is appropriate?

We were on the plane and he was very nervous about take off... I was

holding his hands and instead he held the man next to him's hand (a

stranger). Thank god the man was very nice and seemed tickled to help

him out. When I talked to my son after and said it isn't appropriate

to hold a stranger's hand... he said " mom... he isn't a stranger, I

asked his name! "

Any suggestions on keeping my little motor mouth from talking to

everyone.. and asking inappropriate questions?

mom to (8) asperger's adhd

[Guest guest]

Oh my gosh, that's so cute. I think my most embarrassing was when my son asked

this old lady if she'd be seeing God soon.

aka_andreaa27 <andreaa27@...> wrote: So we are back from

vacation.... my son was quite the character (as

usual).

Are flight was delayed quite a bit and my son was already anxious. He

felt the need to talk to everyone in the airport. " Why is your bag

blue, are you going to see your grandma, why are you wearing

shorts " .... and the worst yet " what is wrong with your butt "

It is hard not to get embarrassed... sometimes it is hard not to

laugh (when he asked a woman who was 90+ if she was going to her

grandmas house)...but how can he learn what is appropriate?

We were on the plane and he was very nervous about take off... I was

holding his hands and instead he held the man next to him's hand (a

stranger). Thank god the man was very nice and seemed tickled to help

him out. When I talked to my son after and said it isn't appropriate

to hold a stranger's hand... he said " mom... he isn't a stranger, I

asked his name! "

Any suggestions on keeping my little motor mouth from talking to

everyone.. and asking inappropriate questions?

mom to (8) asperger's adhd

[Guest guest]

I am interested as well, It seems a is " coming out of her shell " a bit and

way to much at times...

- C.

Mom to Cassie 16 PCOS, Austin 14 ADHD and a 3.5 HFA/AS & SPD/SID

( ) Vacation

So we are back from vacation.... my son was quite the character (as

usual).

Are flight was delayed quite a bit and my son was already anxious. He

felt the need to talk to everyone in the airport. " Why is your bag

blue, are you going to see your grandma, why are you wearing

shorts " .... and the worst yet " what is wrong with your butt "

It is hard not to get embarrassed... sometimes it is hard not to

laugh (when he asked a woman who was 90+ if she was going to her

grandmas house)...but how can he learn what is appropriate?

We were on the plane and he was very nervous about take off... I was

holding his hands and instead he held the man next to him's hand (a

stranger). Thank god the man was very nice and seemed tickled to help

him out. When I talked to my son after and said it isn't appropriate

to hold a stranger's hand... he said " mom... he isn't a stranger, I

asked his name! "

Any suggestions on keeping my little motor mouth from talking to

everyone.. and asking inappropriate questions?

mom to (8) asperger's adhd

[Guest guest]

Well groupies, it is that time of year again. Every year I take a

train trip to see my mom in California.

This year I am taking , my 10-year-old son. I will be leaving tomorrow

around 5 p.m. (if the train is on time). I will try and check my e-mails from

my sister’s house but can’t guarantee an immediate response to

questions. I will be gone until July 22. Have fun and stay healthy. I will

tell you all about our trip when I return.

Janet

[Guest guest]

Im facing the same thing. We are going to pennsylvania for two days, and im

just worried

about how ill do some things with the kids. I cant really go in cold water

with my crps as well as

the ra, but i am determined to do it.. My parents are going with us so if

need be they can take them

to the amusement park. I plan on bringing my chair with a umbrella and just

sit. I cannot walk well either

i have the crps in my left foot and ankle. I may also bring my walker that

has a seat on it

so that i can at least sit when i need to..

Jolene

In a message dated 6/4/2008 10:26:24 A.M. Eastern Daylight Time,

queenstitcher@... writes:

Hi Bonnie!

I had a really hard time going to the beach last year, but I did it anyway

so my family could have a good time. It was absolute hell for me, and yes, I

did have a very hard time walking in the sand. It's a tough position to be in

because you don't want your RA effecting everyone else's life too. What we

did do is stay right on the beach so I didn't have to walk very far to get to

the water, and we pretty much just stayed there. My children were 4 and 6 last

year and they had a great time. On the upside, you could relax in your

hotel's pool at the end of the day to take some of the stress off of your

joints.

Good luck making your decision. It's not ridiculous to worry about ruining a

vacation for your family.

Lori

_http://home.http://home.http://home.<WB_

(http://home.comcast.net/~queenstitcher/)

_http://stitchingquehttp://stitchtt_ (http://stitchingqueen.multiply.com/)

[Non-text portions of this message have been removed]

**************Get trade secrets for amazing burgers. Watch " Cooking with

Tyler Florence " on AOL Food.

(http://food.aol.com/tyler-florence?video=4? & NCID=aolfod00030000000002)

[Guest guest]

Hi Bonnie!

I had a really hard time going to the beach last year, but I did it anyway so my

family could have a good time. It was absolute hell for me, and yes, I did have

a very hard time walking in the sand. It's a tough position to be in because

you don't want your RA effecting everyone else's life too. What we did do is

stay right on the beach so I didn't have to walk very far to get to the water,

and we pretty much just stayed there. My children were 4 and 6 last year and

they had a great time. On the upside, you could relax in your hotel's pool at

the end of the day to take some of the stress off of your joints. Good luck

making your decision. It's not ridiculous to worry about ruining a vacation for

your family.

Lori

http://home.comcast.net/~queenstitcher/

http://stitchingqueen.multiply.com

[Guest guest]

I know its very frustrating and difficult to travel when having an illness. A

few years ago, before I became bedbound for a couple of years, I had had enough

of putting my life on hold due to my illness. I was 32 years old at the time

and felt as if no matter how much pain I had my illness was controlling me. I

was also battling my anxiety disorder and agoraphobia (although I wasn't

completely homebound due to the agoraphobia at that time, it was still difficult

for me to do many things). I had the opportunity to fly all alone to London,

England to meet my boyfriend at the times family. I spent each day, packing

lightly, and organizing for my vacation. I spent as much time as I could

resting before the trip. My psych doctor thought this was a great idea as did

my other doctors. They said I would feel so much worse about myself if I gave

in to my illness and let it take something away from me once again. They urged

me to go. I did have a flare upon returning home

due to the change in climates, the jet lag, and time differences. To be

honest, I had the time of my life, and I never regret to this day having gone.

I paced myself, I took naps, I took time to rest. I also toured the British

National Museum, Tower of London, and all of the sights. Yet I did so on my own

schedule. It helped to give me some confidence that as much as this illness can

take away, I can give myself back! I figured that I was no better off staying

home and resting in my bed, because I still feel the same here that I would

there. Yet mentally, and emotionally I felt so amazing accomplishing something

like that! It made me remember those like Reeve that achieved

amazing miracles when told he would never walk again. I went away for my

birthday 2 years ago for a weekend in Florida. The airport provided me with a

wheelchair and got me to and from my gates. They also used a golf cart to help

me get around. They let me board first and leave the

plane first. They gave me a seat with extra leg room. I so hope you are able

to go. I've found lately that even small things that help me feel better

emotionally help me to not focus on how miserable I feel every day. How fear

controls my every thought and move. Just having my nephew over for the

afternoon to sit by me and play (he will be one year old next month already)

makes me smile and takes my focus off being miserable and scared. So if its at

all possible, pack those extra comfy shoes, rest lots and lots before your

vacation, if flying, have the airline help you as they have me, and for a few

days, steal your life back from this disease:)

Bonnie <tiredtaz@...> wrote: First let me

start off by saying that it is ridiculous that I'm

stressing and loosing sleep over a potential vacation, but I am. I

play the tough girl most days/nights hiding as much pain as I possibly

can so as not to require special treatment or cause my daughter to

worry about me. I'm not a fool, so I know that it is somewhat

unavoidable and my daughter (almost 12) sees more then what she

acknowledges knowing that I need to feel like I have control over this

BS.

But now my hubby is discussing taking a family vacation this summer

and I don't think I can handle it... Vacations mean walking all day,

going here and there and at least one amusement park... I can't do

it:-( After working all day (I even have a desk job with minimal

walking) I can barely stand to put weight on my feet... I tried

mentioning my walking problems with my husband, but I don't think its

getting through. I would love to have a vacation, but lets face it...

Our types of vacations aren't feesable for me anymore. Just after 1/2

day, I'd never be able to move... Heck just after a 45min at the

grocery store caused torture...

I realize I could purchase or rent a scooter, but sometimes the

headache of trying to maneuver those things are more of a pain then

just walking.

Does anyone have any suggestions?

As of now, he wants to go to Merdle Beach, SC... I can't imagine

trying to walk on a beach!

Thanks

Bonnie R.

[Guest guest]

hi bonnie, how are you besides loosing sleep over a vacation? me & my family

have not been on a vacation for a while cuz my hub started a new job & he cant

get away... i understand your frustration when we took our last one it was hard

cuz my daughter loves amusement parks. i can go but i to get tired, however i do

get a scooter so i wont hold up all the fun for the rest of my family. our

daughters are about the same age, alyssa is 11 oh i mean 11in a half. she is so

persistent on the half! bonnie does your daughter know about yor illness? im

totally open with my alyssa cuz if something were to happen to her mommy, i want

her to know i never gave up & i TRIED MY BEST TILL THE END!!just recently we had

a graduation party for her & we went to the beach, of course its hard for me as

well but i sat on the pier & watched her & her friends have fun walking along

the beach even if i could not. i was there thats what MATTER THE MOST TO ALYSSA,

just me being

there to share in her day.. so why not try a scooter & suck it up & still have

fun with your family.. believe you me i did what i could that day & it was all

day but it was for her & shes the only child i have. like you said we do PAY FOR

IT LATER!! whatever you decide, i wish you the best of luck! leave it in gods

hands he will be there. god bless,melyndagamez 6/4/08 11:30a.m.central

[ ] Vacation

First let me start off by saying that it is ridiculous that I'm

stressing and loosing sleep over a potential vacation, but I am.  I

play the tough girl most days/nights hiding as much pain as I possibly

can so as not to require special treatment or cause my daughter to

worry about me.  I'm not a fool, so I know that it is somewhat

unavoidable and my daughter (almost 12) sees more then what she

acknowledges knowing that I need to feel like I have control over this

BS.

But now my hubby is discussing taking a family vacation this summer

and I don't think I can handle it...  Vacations mean walking all day,

going here and there and at least one amusement park...  I can't do

it:-(  After working all day (I even have a desk job with minimal

walking) I can barely stand to put weight on my feet...  I tried

mentioning my walking problems with my husband, but I don't think its

getting through.  I would love to have a vacation, but lets face it...

Our types of vacations aren't feesable for me anymore.  Just after 1/2

day, I'd never be able to move...  Heck just after a 45min at the

grocery store caused torture...

I realize I could purchase or rent a scooter, but sometimes the

headache of trying to maneuver those things are more of a pain then

just walking.

Does anyone have any suggestions?

As of now, he wants to go to Merdle Beach, SC...  I can't imagine

trying to walk on a beach!

Thanks

Bonnie R.

------------------------------------

[Guest guest]

I agree with everyone. Go, go, go on your vacation, do what you have to do

while you are there. You will feel so much better just being with your family,

and having a good time yourself. As said, the airlines are so

wonderful helping people like us who have disabilites, and make traveling easier

for us. My daughter had a baby girl 2 years ago, after 11 years of infertility,

and many heartbreaks along the way. I went home to take care of her, etc. enjoy

my new granddaughter, etc. It was April in N.E., cold rainy etc. My RA was

outrageous, pain city arrived, got sick with URI etc.. Spent days in bed, but, I

would do it again. My time there was so wonderful, having that baby in my arms

day and night. I did what I could, worked around the RA, etc. It was the best

time of my life, no matter what I had to deal with. Lo and behold, they had

another little girl the next April. Now I have 2 miracle babies. I went home

again, the same time of

year, and got sick again, the same thing. But, again I worked around my URI,

and RA. I wouldn't give up one minute of my time with my family. Not matter how

I hurt, or how tired or sick I am with this RA, I will do what I have to do, to

spend quality time with them. Just rest when you can, sit on your beach chair

w/ your umbrella, and enjoy the wonderful peace and joy of the water. I live in

Florida, and go to the beach when it is not too hot. New total hip, and total

knee replacements, I go very slow, find a spot near the water, and there I sit.

I do swim, but need help from hubby to get in the water, and out again. You

would be surprised at the people who offer to help me get out, and I often use

an extra pair of hands to do so. I am going home to Cape Cod the month of Aug.

I haven't seen my best friend in 3 years, and we have missed being together so

much. I am flying alone, have the seat I need on the plane, wheelchairs if I

need one,

porters to get my bag, and my family will meet me at the terminal. I will rest

and take a nap when needed. I just do what I can. You need to enjoy your family

time, as it will restore your heart and soul, and have wonderful memories to

enjoy forever. You will be so happy you went, no matter what. Just enjoy!!! I

hope I do better this trip..... I have prepared myself for anything!!!!! I will

spend time at my daughters with my 2 granddaughters, who are 1 and 2!!!! Oh

what fun they will be. At 68, I want more time with them, and stuff the RA....

I will crawl if I have to, " what a sight that would be " !!!!!! I hope this helps

you, and have a swim for me!!! I wish you pain free days, and I pray God that

this vacation is the best you and your family have ever had.

Hugs,

Barbara

First let me start off by saying that it

is ridiculous that I'm

stressing and loosing sleep over a potential vacation, but I am. I

play the tough girl most days/nights hiding as much pain as I possibly

can so as not to require special treatment or cause my daughter to

worry about me. I'm not a fool, so I know that it is somewhat

unavoidable and my daughter (almost 12) sees more then what she

acknowledges knowing that I need to feel like I have control over this

BS.

But now my hubby is discussing taking a family vacation this summer

and I don't think I can handle it... Vacations mean walking all day,

going here and there and at least one amusement park... I can't do

it:-( After working all day (I even have a desk job with minimal

walking) I can barely stand to put weight on my feet... I tried

mentioning my walking problems with my husband, but I don't think its

getting through. I would love to have a vacation, but lets face it...

Our types of vacations aren't feesable for me anymore. Just after 1/2

day, I'd never be able to move... Heck just after a 45min at the

grocery store caused torture...

I realize I could purchase or rent a scooter, but sometimes the

headache of trying to maneuver those things are more of a pain then

just walking.

Does anyone have any suggestions?

As of now, he wants to go to Merdle Beach, SC... I can't imagine

trying to walk on a beach!

Thanks

Bonnie R.

[Guest guest]

OK, Bonnie, time for a family conference. You can't hide your

condition from your daughter - now she just has to guess what's going

on, and believe me, kids fear the worst! They notice everything, and

make their own conclusions when you don't talk about something that's

going on. Even my 3-year-old granddaughters notice and understand

that Grandma can't do some things. You will probably be amazed at how

well she handles it, and not having to hide how you feel will lower

your stress. Hers, too. My hubby has had a hard time accepting that

I have limitations, so I drag him along to my rheumy visits. My

daughter had just graduated from high school when this hit me, and she

goes along when hubby can't. My rheumy has been great about educating

my whole family!

So, sit down with them. Let them know you really want to go, but

you're afraid you can't handle it. Make some suggestions about what

you could do - a wheelchair at the airport, a scooter or wheelchair at

amusement parks - a hotel with a jacuzzi so you can soak every

evening! After all, wheelchairs get to go to the front of most lines

in amusement parks. Plan a couple of rest days - hanging around

the hotel pool, reading, a massage, whatever. Maybe they could go off

and do something without you those days if they don't want to just

hang out. There's something to be said for daddy-daughter time, too.

Make it clear to your hubby that the only way you can walk on the

beach is if he helps you. Be patient with them if they don't get it at

first, you've been hiding a lot.

You didn't mention whether or not you're using a cane. I found that

using a cane, or even better, a forearm crutch, lets me walk much,

much long than I can without it. And that third point steadies me,

makes stairs or rough ground sooooo much easier. I guess I made a

decision that I would not give up until I had too, that I would use

whatever it takes to keep going whereever I wanted. Now, it's the

crutch, but believe me I have no hesitations about using a scooter or

a wheelchair if it becomes necessary. My family agrees with me, they

want me to be as active as possible. I can't imagine that your

daughter would feel differently, once she gets used to the idea.

Talk to your rheumy for other ideas and help. My handicapped placard

is a lifesaver when it comes to saving steps! Also, maybe he can give

you pain meds to help you over the worst part for a few days.

You can take vacations, you just need to adjust them to fit your

needs, and to plan carefully. And to rest! before, during, and after.

Good luck to you!

On Wed, Jun 4, 2008 at 4:30 AM, Bonnie <tiredtaz@...> wrote:

> First let me start off by saying that it is ridiculous that I'm

> stressing and loosing sleep over a potential vacation, but I am. I

> play the tough girl most days/nights hiding as much pain as I possibly

> can so as not to require special treatment or cause my daughter to

> worry about me. I'm not a fool, so I know that it is somewhat

> unavoidable and my daughter (almost 12) sees more then what she

> acknowledges knowing that I need to feel like I have control over this

> BS.

> But now my hubby is discussing taking a family vacation this summer

> and I don't think I can handle it... Vacations mean walking all day,

> going here and there and at least one amusement park... I can't do

> it:-( After working all day (I even have a desk job with minimal

> walking) I can barely stand to put weight on my feet... I tried

> mentioning my walking problems with my husband, but I don't think its

> getting through. I would love to have a vacation, but lets face it...

> Our types of vacations aren't feesable for me anymore. Just after 1/2

> day, I'd never be able to move... Heck just after a 45min at the

> grocery store caused torture...

> I realize I could purchase or rent a scooter, but sometimes the

> headache of trying to maneuver those things are more of a pain then

> just walking.

> Does anyone have any suggestions?

> As of now, he wants to go to Merdle Beach, SC... I can't imagine

> trying to walk on a beach!

> Thanks

> Bonnie R.

>

--

South Pasadena, CA / Lilydale, MN

You can see my galleries at http://www.pbase.com/arenared986

M. Schulz - " All you need is love. But a little chocolate now

and then doesn't hurt. "

[Guest guest]

I think that's a really great motto to live by as well! Even when it's very

difficult and challenging. I tend to view my panic disorder that way as well.

I figure I will be just as anxious here as I am visiting a close friend. Yet,

actually visiting a close friend would probably take the edge off my anxiety so

I am trying to apply it to that area in my life as well:) I also look at it as

we tend to beat ourselves up when we cannot do something, we sometimes feel

guilty and bad. I know if I stay home I will only do that to myself, and going

gives me so much confidence and emotional happiness even if there is a slight

flare to pay for afterwards:)

Sue <marysue@...> wrote: That reminds

me so much of what my mother used to say. She didn't have

RA, just osteoarthritis. She said that she could hurt just as well off

somewhere as she could at home, so she didn't let it get in the way.

Sue

On Wednesday, June 4, 2008, at 12:00 PM, stephanie wrote:

> I figured that I was no better off staying home and resting in my bed,

> because I still feel the same here that I would there.

[Guest guest]

That reminds me so much of what my mother used to say. She didn't have

RA, just osteoarthritis. She said that she could hurt just as well off

somewhere as she could at home, so she didn't let it get in the way.

Sue

On Wednesday, June 4, 2008, at 12:00 PM, stephanie wrote:

> I figured that I was no better off staying home and resting in my bed,

> because I still feel the same here that I would there.

[Guest guest]

I understand this dilemma. For the past 4 years I've taken an annual

vacation to attend a specific event. It's one week of camping in a

pretty hostile environment. I realized this year, that no matter how

much I didn't want to give in to RA, that I simply won't be able to go

on my regular vacation. It's just too intense and would probably cause

me more harm than good.

So now I'm trying to figure out a more moderate vacation that I can enjoy.

Good luck with whatever you decide!

>

> First let me start off by saying that it is ridiculous that I'm

> stressing and loosing sleep over a potential vacation, but I am. I

> play the tough girl most days/nights hiding as much pain as I possibly

> can so as not to require special treatment or cause my daughter to

> worry about me. I'm not a fool, so I know that it is somewhat

> unavoidable and my daughter (almost 12) sees more then what she

> acknowledges knowing that I need to feel like I have control over this

> BS.

> But now my hubby is discussing taking a family vacation this summer

> and I don't think I can handle it... Vacations mean walking all day,

> going here and there and at least one amusement park... I can't do

> it:-( After working all day (I even have a desk job with minimal

> walking) I can barely stand to put weight on my feet... I tried

> mentioning my walking problems with my husband, but I don't think its

> getting through. I would love to have a vacation, but lets face it...

> Our types of vacations aren't feesable for me anymore. Just after 1/2

> day, I'd never be able to move... Heck just after a 45min at the

> grocery store caused torture...

> I realize I could purchase or rent a scooter, but sometimes the

> headache of trying to maneuver those things are more of a pain then

> just walking.

> Does anyone have any suggestions?

> As of now, he wants to go to Merdle Beach, SC... I can't imagine

> trying to walk on a beach!

> Thanks

> Bonnie R.

>

[Guest guest]

Thanks ...

We have had family meetings pertaining to my illness/issues, and we've

discussed how I need more help around the house and I can't go to the

mall for hours anymore. I don't know, but I still feel the need to

hide as much as my discomfort as I possibly can... She has even done

some research on the computer for me and has found some interesting

articles... I just don't want to feel as if I'm loosing this battle

and I don't want her to see me giving in too it.... Perhaps I'm only

fooling myself...

Thanks for everything

Bonnie R.

-- In , " Overell "

<patricia.overell@...> wrote:

>

> OK, Bonnie, time for a family conference. You can't hide your

> condition from your daughter - now she just has to guess what's going

> on, and believe me, kids fear the worst! They notice everything, and

> make their own conclusions when you don't talk about something that's

> going on. Even my 3-year-old granddaughters notice and understand

> that Grandma can't do some things. You will probably be amazed at how

> well she handles it, and not having to hide how you feel will lower

> your stress. Hers, too. My hubby has had a hard time accepting that

> I have limitations, so I drag him along to my rheumy visits. My

> daughter had just graduated from high school when this hit me, and she

> goes along when hubby can't. My rheumy has been great about educating

> my whole family!

>

> So, sit down with them. Let them know you really want to go, but

> you're afraid you can't handle it. Make some suggestions about what

> you could do - a wheelchair at the airport, a scooter or wheelchair at

> amusement parks - a hotel with a jacuzzi so you can soak every

> evening! After all, wheelchairs get to go to the front of most lines

> in amusement parks. Plan a couple of rest days - hanging around

> the hotel pool, reading, a massage, whatever. Maybe they could go off

> and do something without you those days if they don't want to just

> hang out. There's something to be said for daddy-daughter time, too.

> Make it clear to your hubby that the only way you can walk on the

> beach is if he helps you. Be patient with them if they don't get it at

> first, you've been hiding a lot.

>

> You didn't mention whether or not you're using a cane. I found that

> using a cane, or even better, a forearm crutch, lets me walk much,

> much long than I can without it. And that third point steadies me,

> makes stairs or rough ground sooooo much easier. I guess I made a

> decision that I would not give up until I had too, that I would use

> whatever it takes to keep going whereever I wanted. Now, it's the

> crutch, but believe me I have no hesitations about using a scooter or

> a wheelchair if it becomes necessary. My family agrees with me, they

> want me to be as active as possible. I can't imagine that your

> daughter would feel differently, once she gets used to the idea.

>

> Talk to your rheumy for other ideas and help. My handicapped placard

> is a lifesaver when it comes to saving steps! Also, maybe he can give

> you pain meds to help you over the worst part for a few days.

>

> You can take vacations, you just need to adjust them to fit your

> needs, and to plan carefully. And to rest! before, during, and after.

> Good luck to you!

>

>

> On Wed, Jun 4, 2008 at 4:30 AM, Bonnie <tiredtaz@...> wrote:

> > First let me start off by saying that it is ridiculous that I'm

> > stressing and loosing sleep over a potential vacation, but I am. I

> > play the tough girl most days/nights hiding as much pain as I possibly

> > can so as not to require special treatment or cause my daughter to

> > worry about me. I'm not a fool, so I know that it is somewhat

> > unavoidable and my daughter (almost 12) sees more then what she

> > acknowledges knowing that I need to feel like I have control over this

> > BS.

> > But now my hubby is discussing taking a family vacation this summer

> > and I don't think I can handle it... Vacations mean walking all day,

> > going here and there and at least one amusement park... I can't do

> > it:-( After working all day (I even have a desk job with minimal

> > walking) I can barely stand to put weight on my feet... I tried

> > mentioning my walking problems with my husband, but I don't think its

> > getting through. I would love to have a vacation, but lets face it...

> > Our types of vacations aren't feesable for me anymore. Just after 1/2

> > day, I'd never be able to move... Heck just after a 45min at the

> > grocery store caused torture...

> > I realize I could purchase or rent a scooter, but sometimes the

> > headache of trying to maneuver those things are more of a pain then

> > just walking.

> > Does anyone have any suggestions?

> > As of now, he wants to go to Merdle Beach, SC... I can't imagine

> > trying to walk on a beach!

> > Thanks

> > Bonnie R.

> >

>

>

>

>

> --

>

> South Pasadena, CA / Lilydale, MN

> You can see my galleries at http://www.pbase.com/arenared986

>

> M. Schulz - " All you need is love. But a little chocolate now

> and then doesn't hurt. "

>

[Guest guest]

I'm still anxious about our vacation discussions, but thanks to

everyones suggestions, I've realized that I have to bite the bullet

and allow for assistance while still living as close to normal as

possible... So as it stands now, I'm off to Mirtle Beach sometime

this summer.

My first OT therapy went well last night, as she gave me some

exercises to help keep up strength and finger braces to help reduce

additional damage caused by hyper extension.. I'll will only be

going once per week, but I am already looking forward to the next week.

Thanks to everyone who replied... I read every single one and found

myself getting pretty emotional during a few... Everyone is right, I

have to find a way to continue with my usual routines and moving on...

You are all awesome!

Bonnie R.

First let me start off by

saying that it is ridiculous that I'm

> stressing and loosing sleep over a potential vacation, but I am. I

> play the tough girl most days/nights hiding as much pain as I possibly

> can so as not to require special treatment or cause my daughter to

> worry about me. I'm not a fool, so I know that it is somewhat

> unavoidable and my daughter (almost 12) sees more then what she

> acknowledges knowing that I need to feel like I have control over this

> BS.

> But now my hubby is discussing taking a family vacation this summer

> and I don't think I can handle it... Vacations mean walking all day,

> going here and there and at least one amusement park... I can't do

> it:-( After working all day (I even have a desk job with minimal

> walking) I can barely stand to put weight on my feet... I tried

> mentioning my walking problems with my husband, but I don't think its

> getting through. I would love to have a vacation, but lets face it...

> Our types of vacations aren't feesable for me anymore. Just after 1/2

> day, I'd never be able to move... Heck just after a 45min at the

> grocery store caused torture...

> I realize I could purchase or rent a scooter, but sometimes the

> headache of trying to maneuver those things are more of a pain then

> just walking.

> Does anyone have any suggestions?

> As of now, he wants to go to Merdle Beach, SC... I can't imagine

> trying to walk on a beach!

> Thanks

> Bonnie R.

>

>

>

>

>

>

[Guest guest]

Bonnie

I am so so so very proud of you! It may seem difficult to see now, but I promise

you, it will be well worth it for you emotionally! It helps show us that we are

still people with a life and that we can thrive through this illness! It does

wonders for the mind! And I truly belief in the mind-body connection! I'm

learning so much (currently with my panic disorder, but we are also working on

my physical illnesses). & nbsp; I am learning how very important my mind is! I am

praying you have a wonderful time and remember, you are a strong, brave person

who deserves this wonderful time away!

From: Bonnie & lt;tiredtaz@... & gt;

Subject: [ ] Re: Vacation

Date: Thursday, June 5, 2008, 7:08 AM

I'm still anxious about our vacation discussions, but thanks to

everyones suggestions, I've realized that I have to bite the bullet

and allow for assistance while still living as close to normal as

possible... So as it stands now, I'm off to Mirtle Beach sometime

this summer.

My first OT therapy went well last night, as she gave me some

exercises to help keep up strength and finger braces to help reduce

additional damage caused by hyper extension.. I'll will only be

going once per week, but I am already looking forward to the next week.

Thanks to everyone who replied... I read every single one and found

myself getting pretty emotional during a few... Everyone is right, I

have to find a way to continue with my usual routines and moving on...

You are all awesome!

Bonnie R.

First let me start off by

saying that it is ridiculous that I'm

& gt; stressing and loosing sleep over a potential vacation, but I am. I

& gt; play the tough girl most days/nights hiding as much pain as I possibly

& gt; can so as not to require special treatment or cause my daughter to

& gt; worry about me. I'm not a fool, so I know that it is somewhat

& gt; unavoidable and my daughter (almost 12) sees more then what she

& gt; acknowledges knowing that I need to feel like I have control over this

& gt; BS.

& gt; But now my hubby is discussing taking a family vacation this summer

& gt; and I don't think I can handle it... Vacations mean walking all day,

& gt; going here and there and at least one amusement park... I can't do

& gt; it:-( After working all day (I even have a desk job with minimal

& gt; walking) I can barely stand to put weight on my feet... I tried

& gt; mentioning my walking problems with my husband, but I don't think its

& gt; getting through. I would love to have a vacation, but lets face it...

& gt; Our types of vacations aren't feesable for me anymore. Just after 1/2

& gt; day, I'd never be able to move... Heck just after a 45min at the

& gt; grocery store caused torture...

& gt; I realize I could purchase or rent a scooter, but sometimes the

& gt; headache of trying to maneuver those things are more of a pain then

& gt; just walking.

& gt; Does anyone have any suggestions?

& gt; As of now, he wants to go to Merdle Beach, SC... I can't imagine

& gt; trying to walk on a beach!

& gt; Thanks

& gt; Bonnie R.

& gt;

& gt;

& gt;

& gt;

& gt;

& gt;

[Guest guest]

WAY TO GO BONNIE. IM SO PROUD OF YOU.HERE'S A SAYING TO LEAVE YOU WITH:

DO ALL THE GOOD YOU CAN

BY ALL THE MEANS YOU CAN

IN ALL THE WAYS YOU CAN

IN ALL THE PLACES YOU CAN

AT ALL THE TIMES YOU CAN

TO ALL THE PEOPLE YOU CAN

AS LONG AS EVER YOU CAN....... DO RIGHT AND LEAVE THE REST TO GOD.... GOD

BLESS,MELYNDAGAMEZ 6/5/08 12:15P.M.CENTRAL TIME

[ ] Re: Vacation

I'm still anxious about our vacation discussions, but thanks to

everyones suggestions, I've realized that I have to bite the bullet

and allow for assistance while still living as close to normal as

possible...  So as it stands now, I'm off to Mirtle Beach sometime

this summer. 

My first OT therapy went well last night, as she gave me some

exercises to help keep up strength and finger braces to help reduce

additional damage caused by  hyper extension..  I'll will only be

going once per week, but I am already looking forward to the next week.

Thanks to everyone who replied...  I read every single one and found

myself getting pretty emotional during a few...  Everyone is right, I

have to find a way to continue with my usual routines and moving on...

You are all awesome!

Bonnie R.

First let me start off by

saying that it is ridiculous that I'm

> stressing and loosing sleep over a potential vacation, but I am. I

> play the tough girl most days/nights hiding as much pain as I possibly

> can so as not to require special treatment or cause my daughter to

> worry about me. I'm not a fool, so I know that it is somewhat

> unavoidable and my daughter (almost 12) sees more then what she

> acknowledges knowing that I need to feel like I have control over this

> BS.

> But now my hubby is discussing taking a family vacation this summer

> and I don't think I can handle it... Vacations mean walking all day,

> going here and there and at least one amusement park... I can't do

> it:-( After working all day (I even have a desk job with minimal

> walking) I can barely stand to put weight on my feet... I tried

> mentioning my walking problems with my husband, but I don't think its

> getting through. I would love to have a vacation, but lets face it...

> Our types of vacations aren't feesable for me anymore. Just after 1/2

> day, I'd never be able to move... Heck just after a 45min at the

> grocery store caused torture...

> I realize I could purchase or rent a scooter, but sometimes the

> headache of trying to maneuver those things are more of a pain then

> just walking.

> Does anyone have any suggestions?

> As of now, he wants to go to Merdle Beach, SC... I can't imagine

> trying to walk on a beach!

> Thanks

> Bonnie R.

>

>

>

>

>

>