Vacation

[Guest guest]

Maine is a lovely place.   I have only visited there twice--never stayed there,

but we did stay in New Hampshire.  Maybe one day we will get to Maine for a

vacation.  Have a great time!

From: Currier <redsoxkitten@...>

Subject: [ ] vacation

" Currier " <redsoxkitten@...>

Date: Friday, July 4, 2008, 9:21 PM

Hello everyone!

Just wanted to send a quick note to let you know I'm on the mend and will be

headed to Maine with and the kids for a week of relaxation. I plan to

be in full swing when I return.

To all of my group friends, I will be on no-mail during this time, as

I will have my computer turned off.

I'll miss everyone, and will catch up with you all when we return next week!

Love and hugs to all,

Jenn

[Guest guest]

Hi Bobby: Have a safe trip, and enjoy yourself. You certainly deserve it. I

used to spend my summer vacations at my Aunt's house in Long Island when I was

YOUNG. I do not remember what part of Long Island she even lived in, but I had

lots of fun.

[Guest guest]

Have a blast, girlfriend! I'd say you're due a rip-roaring vacation.

From: rcd1929@...

Date: Tue, 7 Jul 2009 15:13:16 -0700

Subject: [ ] vacation

Hi All, I'm off tomorrow morning for a nice drive to Long Island, NY, to

visit with my sister, my oldest friend, and an annual alumni high school

luncheon. Do it every year, if the meds permit and this is a good year.

I'm going with my youngest daughter Colleen, I do the driving, she keeps me

awake! It's about 500 miles. We go on Wed. visit 3 days, and return Sun.

You all behave while I'm gone, you too Bob in Indiana, no shenanigans,

you hear? Bobby

a (Bobby) Doyle Brecksville, Ohio, USA DX 05/1995 02/2000 - Gleevec

Trial/OHSU 06/2002 - Gleevec/Trisenox Trial/OHSU 06/2003 - Gleevec/Zarnestra

Trial/OHSU 04/2004 - Sprycel Trial/MDACC, CCR in 10 months #840 - Zavie's

Zero Club 09/2006 - out of CCR 04/29/08 - XL228 Trial/ U.of Michigan

06/02/08 - CCR ( in 4 weeks)

02/13/09 - XL trial ended due to side effects

04/13/09 - New Trial, Ariad / U. of Mich./ Dr. Talpaz

[Guest guest]

i would say that wishing a cml patient to have a blast is rather scary....

but have lots of fun and good time

giora

[ ] vacation

Hi All, I'm off tomorrow morning for a nice drive to Long Island, NY,

to visit with my sister, my oldest friend, and an annual alumni high school

luncheon. Do it every year, if the meds permit and this is a good year.

I'm going with my youngest daughter Colleen, I do the driving, she keeps me

awake! It's about 500 miles. We go on Wed. visit 3 days, and return Sun.

You all behave while I'm gone, you too Bob in Indiana, no

shenanigans, you hear? Bobby

a (Bobby) Doyle Brecksville, Ohio, USA DX 05/1995 02/2000 - Gleevec

Trial/OHSU 06/2002 - Gleevec/Trisenox Trial/OHSU 06/2003 -

Gleevec/Zarnestra Trial/OHSU 04/2004 - Sprycel Trial/MDACC, CCR in 10

months #840 - Zavie's Zero Club 09/2006 - out of CCR 04/29/08 - XL228

Trial/ U.of Michigan 06/02/08 - CCR ( in 4 weeks)

02/13/09 - XL trial ended due to side effects

04/13/09 - New Trial, Ariad / U. of Mich./ Dr. Talpaz

[Guest guest]

That made me laught out loud- yep blast is not a word we want to hear but it may

be like " break a leg  " that is said to actors-

From: giora <giora1@...>

Subject: Re: [ ] vacation

Date: Wednesday, July 8, 2009, 12:14 AM

i would say that wishing a cml patient to have a blast is rather scary....

but have lots of fun and good time

giora

[ ] vacation

      Hi All, I'm off tomorrow morning for a nice drive to Long Island, NY,

to visit with my sister, my oldest friend, and an annual alumni high school

luncheon.  Do it every  year, if the meds permit and this is a good year.

I'm going with my youngest daughter Colleen, I do the driving, she keeps me

awake!  It's about 500 miles.  We go on Wed. visit 3 days, and return Sun.

You all behave while I'm gone, you too Bob in Indiana, no

shenanigans, you hear? Bobby

a (Bobby) Doyle  Brecksville, Ohio, USA  DX 05/1995  02/2000 - Gleevec

Trial/OHSU  06/2002 - Gleevec/Trisenox Trial/OHSU  06/2003 -

Gleevec/Zarnestra Trial/OHSU  04/2004 - Sprycel Trial/MDACC, CCR in 10

months  #840  -   Zavie's Zero Club  09/2006 -  out of CCR  04/29/08 -

XL228

Trial/ U.of Michigan  06/02/08 - CCR ( in 4 weeks)

02/13/09 - XL trial ended due to side effects

04/13/09 - New Trial, Ariad / U. of Mich./ Dr. Talpaz

[Guest guest]

Yow! What a terrible faux pas. My apologies!

A red-faced

From: chimera46@...

Date: Wed, 8 Jul 2009 13:04:00 -0700

Subject: Re: [ ] vacation

That made me laught out loud- yep blast is not a word we want to hear but

it may be like " break a leg " that is said to actors-

From: giora <giora1@...>

Subject: Re: [ ] vacation

Date: Wednesday, July 8, 2009, 12:14 AM

i would say that wishing a cml patient to have a blast is rather scary....

but have lots of fun and good time

giora

[ ] vacation

Hi All, I'm off tomorrow morning for a nice drive to Long Island, NY,

to visit with my sister, my oldest friend, and an annual alumni high school

luncheon. Do it every year, if the meds permit and this is a good year.

I'm going with my youngest daughter Colleen, I do the driving, she keeps me

awake! It's about 500 miles. We go on Wed. visit 3 days, and return Sun.

You all behave while I'm gone, you too Bob in Indiana, no

shenanigans, you hear? Bobby

a (Bobby) Doyle Brecksville, Ohio, USA DX 05/1995 02/2000 - Gleevec

Trial/OHSU 06/2002 - Gleevec/Trisenox Trial/OHSU 06/2003 -

Gleevec/Zarnestra Trial/OHSU 04/2004 - Sprycel Trial/MDACC, CCR in 10

months #840 - Zavie's Zero Club 09/2006 - out of CCR 04/29/08 - XL228

Trial/ U.of Michigan 06/02/08 - CCR ( in 4 weeks)

02/13/09 - XL trial ended due to side effects

04/13/09 - New Trial, Ariad / U. of Mich./ Dr. Talpaz

[Guest guest]

Dear

i am sorry if you took my remark as a critisem. it had no such intention.

i only ment to look at the humor side of the double meaning of words.

please dont feel any uncomfort. u only ment good

shalom

giora

[ ] vacation

Hi All, I'm off tomorrow morning for a nice drive to Long Island, NY,

to visit with my sister, my oldest friend, and an annual alumni high school

luncheon. Do it every year, if the meds permit and this is a good year.

I'm going with my youngest daughter Colleen, I do the driving, she keeps me

awake! It's about 500 miles. We go on Wed. visit 3 days, and return Sun.

You all behave while I'm gone, you too Bob in Indiana, no

shenanigans, you hear? Bobby

a (Bobby) Doyle Brecksville, Ohio, USA DX 05/1995 02/2000 - Gleevec

Trial/OHSU 06/2002 - Gleevec/Trisenox Trial/OHSU 06/2003 -

Gleevec/Zarnestra Trial/OHSU 04/2004 - Sprycel Trial/MDACC, CCR in 10

months #840 - Zavie's Zero Club 09/2006 - out of CCR 04/29/08 - XL228

Trial/ U.of Michigan 06/02/08 - CCR ( in 4 weeks)

02/13/09 - XL trial ended due to side effects

04/13/09 - New Trial, Ariad / U. of Mich./ Dr. Talpaz

[Guest guest]

None taken! Sure had to laugh at myself though. Thanks and Shalom to you too.

>

> From: giora1@...

> Date: Wed, 8 Jul 2009 22:33:01 +0200

> Subject: Re: [ ] vacation

>

> Dear

> i am sorry if you took my remark as a critisem. it had no such intention.

> i only ment to look at the humor side of the double meaning of words.

> please dont feel any uncomfort. u only ment good

> shalom

> giora

> [ ] vacation

>

>

>

> Hi All, I'm off tomorrow morning for a nice drive to Long Island, NY,

>

> to visit with my sister, my oldest friend, and an annual alumni high school

>

> luncheon. Do it every year, if the meds permit and this is a good year.

>

>

>

> I'm going with my youngest daughter Colleen, I do the driving, she keeps me

>

> awake! It's about 500 miles. We go on Wed. visit 3 days, and return Sun.

>

>

>

> You all behave while I'm gone, you too Bob in Indiana, no

>

> shenanigans, you hear? Bobby

>

>

>

> a (Bobby) Doyle Brecksville, Ohio, USA DX 05/1995 02/2000 - Gleevec

>

> Trial/OHSU 06/2002 - Gleevec/Trisenox Trial/OHSU 06/2003 -

>

> Gleevec/Zarnestra Trial/OHSU 04/2004 - Sprycel Trial/MDACC, CCR in 10

>

> months #840 - Zavie's Zero Club 09/2006 - out of CCR 04/29/08 - XL228

>

> Trial/ U.of Michigan 06/02/08 - CCR ( in 4 weeks)

>

>

>

> 02/13/09 - XL trial ended due to side effects

>

>

>

> 04/13/09 - New Trial, Ariad / U. of Mich./ Dr. Talpaz

>

>

>

>

[Guest guest]

Hi Family,

I am going to be on vacation for 3 weeks so I am going to change my email setting to Internet only. Will miss you all. See you all when I get back. Going to Maine and RI for 10 days each to reconnect with relatives that I haven't seen in many years.

Love, Light, Peace and Joy,CherylVisit me at: http://www.myspace.com/senegaladyBe safe - use the Bcc method for multiple emails and deleteother people's addresses before forwarding emails

[Guest guest]

Hi Misty.

When my PsA introduced itself to me it was just a week or so before a planned

trip to Disneyland. It was in the toes of my right foot and I wasn't able to

walk using that part of my foot, nor stand up for more than a few minutes

without severe pain pain. I took along some instant ice packs (the kind you

typically find in a first aid kit) and pain medication and it got me through but

I still really suffered throughout the whole vacation.

Within four months of that the joints in my lower back and fingers got going and

I had a problem with psoriasis for a number of years that now had worsened.

That's when I got a final diagnosis of PsA.  I was put on MTX another four

months later (by injection because there was no way my stomach would tolerate

it) but I had a lot of fatigue and nausea just the same. It does get better as

you go forward (most people, I think) and you've only been on it for a couple of

weeks so don't let this discourage you.

My son wanted to go back to Disneyland the following year - Lord, have mercy...,

and we decided to go and since I knew the problem I was better prepared.

Hopefully you might benefit from what follows here.

I'll start with the MTX (I'm assuming you are taking it once a week): take your

last dose three days beforehand, adding folic acid for all the days that follow

(not on the same day). This will give you a few days to get through the worst of

it before you travel and the folic acid will ease the fatigue and nausea. If

needed, take some Gravol with you. Do not take your next dose of MTX until the

day you arrive home unless, of course, you are planning to be away for a long

time. Most people plan Disney vacations for a week to ten days and I'm assuming

you are planning a similar timeframe.

Make sure you bring a hat that will shade your neck and shoulders, and use lots

of sunscreen. This should minimize or eliminate the hypersensitivity to the sun

brought on by the MTX and antidepressants. Take a second pair of comfortable

shoes and use the diabetic-type socks as they stimulate good circulation. Bring

footcare lotion and soaking type things and give yourself a mini-treatment at

the end of the day and when you change your shoes and sox. My hubby wore a

backpack that included these things. Also, drinking lots of fluids is especially

important because dehydration will only contribute to fatigue and nausea.

A scooter is a good idea if your PsA is very painful, and you can also rent

wheelchairs onsite. Fortunately, I didn't need one as I was doing much better

the second time, but lots of people do - and it could even get you and your

family fast access to the attractions so it could be a bonus for the kids! There

are plenty of things to see and do, and places to sit and rest, while kids wait

in long line ups. If you decide you're well enough to be on your feet, you can

buy a little contraption in a camping/sporting goods store that looks like an

umbrella/cane which opens up to be a small triangular cloth seat. Because it

doesn't take up any room you won't get any complaints from other people. I love

this. When the line ups move you just simply get up move to the next spot and

sit down again.

I have just one child who is now almost eighteen. The onset of my PsA was almost

ten years ago so he had to learn at a young age that I wasn't capable to doing a

lot of the things he wanted to do. I just answered his questions truthfully.

Kids are kids and they can be pretty selfish at any age, but in my experience he

was better able to understand that I can't do this or that because of pain

rather than just knowing I was tired. Kids are full of energy so they don't

always understand fatigue unless they are unwell themselves. But tell them you

are sore and where it hurts and they can relate much more easily.

Hope this helps,

Chiara

[Guest guest]

Hi Misty,

Welcome.

1st off TELL your family, children, spouse, siblings and anyone else that will

listen about your disease!!! Then tell them what it means for you, ie:

difficulty walking or getting tired, etc.. Be honest and answer truthfully as

you can. PA is not nearly as scary as many other diseases. They CAN handle

this. FYI, I'm sure they already know that you aren't yourself. If you keep them

in the dark, they will jump to their own conclusions that are likely much more

terrifying than PA.

You don't say how old your kids are, but as tweens most likely they can go off

on their own when you tire and meet you or call you at pre-arranged times and

places. They probably will even enjoy this freedom and learn some responsibility

too. AND use a scooter if you need it and make use of those much shorter

" disabled " lines!!

Stay Well,

[Guest guest]

Misty,

Welcome. I am glad to hear you switched the MTX to the shots. That should help

the nausea. I can't remember how long it took to really kick in, but I was where

you are. I used to hurt all over. Every movement caused pain. I am almost pain

free now. The fatigue is real. My kids know there are days when mom has to nap

and rest much of the day. I think a scooter may be a good idea even if you are

feeling better. I tend to flare after over exerting myself and walking around

Disney for days would do that.

Also, the depression and brain fog is real. I am on an antidepressant also but

usually the depression improves as the flare fades. As far as your kids, I would

lay it all out. They know something is wrong anyway and their imaginations about

your condition may be scarier that the truth. God bless, Patty

[Guest guest]

Hi Misty --

Have you tried taking the MTX at night before bed? I find that if I take it

after a meal and before I go to bed, I sleep through any feelings of nausea.

Any residual nausea in the morning is pretty minor.

I've been on it for a few years. But if I recall, after the first few

weeks, the nausea improved dramatically. Also be sure you're taking folic

acid along with it (prescription). I take it daily and it reduces some side

effects. If that doesn't work, you might want to ask the doctor if you can

reduce the pills and work up to the recommended dose. I believe that's what

my doctor did -- and it worked well.

In terms of Disney, you should plan on going! First of all, I've found that

the warmth of the sun actually helps my PA. I'm not sure where you are

located, but if it's anywhere that is rainy and/or cold, that could be

making your symptoms worse. You should find the sunshine to be a great

help. You might want to consider getting a lamp that simulates sunlight as

well. I have one on my desk and it works well. Just don't overdo the sun.

I discovered that a sunburn made things worse.

If you feel like you need a scooter, don't rent from Disney. You can only

get them for the day and it is first come, first served. So if you don't

reach a specific park early enough, you might not get one.

I would recommend calling Disney in advance and seeing if they have a list

of local scooter providers. You can rent them for longer periods offsite --

and you can keep it with you as long as you are there. We made this mistake

the last time I went to Disney -- and it wasn't fun if someone had to push

me in a wheelchair. Of course, if you're only there for a few days, just

get to the park early enough to get a scooter for the day and you should be

fine. On the plus side, you and your family might get some shortened access

to some of the rides!!

By the way, I'm only 46 -- and had to rent a scooter. Don't be embarrassed.

You'll see plenty of people of all ages on scooters at Disney. Just relax

and have a good time. And if you get too tired, send the family off to the

parks with the kids and enjoy a relaxing book by the pool. The water and

sun will probably make you feel much better!

In regard to kids, they adapt pretty quickly. I just explained to my

daughter that sometimes Mom will be pretty tired and in pain from her PA.

As long as she understood it was just something I had to deal with and that

it wasn't something she could catch and that I wouldn't die from it, she

handled it well. Over the years, she's learned to help out more -- and it

has given her a better sense of compassion for people in pain. Of course,

we do have our moments. But those are few and far between.

You might also want to figure out if your fatigue has a pattern. For

example, my joints are much worse in the morning. I can barely move my

fingers and every joint hurts. However, by evening, my joints have loosened

up, so I have more energy. So I have a daily plan that makes the fatigue

and pain easier to cope with. I get up (slowly) and make breakfast for my

daughter and take her to school. Then I come home and rest (and sometimes

go back to sleep). That seems to help. Later in the morning, I feel better

and can handle the rest of the day much easier. Sometimes I'll take a spa

or a swim if possible (that really helps). Or a hot shower. Particularly

if I have to get up and stay up in the morning. With kids, you may want to

figure out a schedule for your " rest time " that coordinates with your

children's naps or times they are at school. If everyone gets used to your

" down " times, things will be easier. The key is resting when you need to --

and trying not to overdo. When I overdo, I feel it. I also know that

weather changes (i.e. rain or cold) can make things worse. So on those

days, I ask for extra help in advance. Communicating with other family

members does help. But I try not to complain all the time. If I do,

everyone gets tired of hearing it. So I make sure that I only stress how

much I hurt when I'm in serious pain. Then they know I'm serious!

Just hang in there. We all understand what you're going through! You are

not alone!

And have a wonderful time at Disney!!!

Patty

California

[Guest guest]

Hi Misty!

I use those motorized scooters whenever I can. There is no shame in it at all. I

had a hard time at first because I felt like I was giving into the disease, but

really it empowers up to not stop living our lives. Once I changed the way I saw

it, it was easier to use them. Also... call the airlines and they will have a

wheelchair for you. I always say the one and only benefit of this disease is not

having to wait in the security lines at the airport! You and your family can go

right through.

Good luck to you!

chellie

[Guest guest]

Hello,

One of the few bonuses of our situation is theme parks. Most if not all

including Disney let you ride the ride twice if in a chair of scooter!! You go

in on the exit ramps and if your on a roller coaster or something you just stay

in your seat and go again! Your kids will think that's kinda cool! Disney has

chairs and scooters available on site, you may want to call ahead and reserve

one. Check there site for other possible benefits. I was 30 when we took our

kids to Disney and rode a scooter the whole time, there was no other way for me.

Pace yourself and you will have a great time I bet.

Good Luck, Eileen

[Guest guest]

Misty,

I can address a couple of your concerns.

First, the injectable methotrexate has far fewer side effects than the oral.

But, there is still a lot of weakness and fatigue.

Also ­ I see a pain management doctor who helps me a lot, including giving

me something for energy, so that helps too.

If your family truly is not educated, then I would get them some accurate

information about your illness. Sometimes, I think the term arthritis, is a

tricky one, because, people think- well

Everyone has that.... When inflammatory arthritis is a whole different bag!

Good luck to you --- K

[Guest guest]

Hi Misty, I have taken MTX by the injection and its works very well on both the

P and the Pain with almost no side effects..You doctor must monitor the liver

enzymes mine when up so I did have to discontinue, they went down after .. there

is also a website called The Road Back which treats PA buy the use of Minocin

and it has helped me..I hope you feel better , best wishes michael