Thanks for the support

[Guest guest]

lesliesa@... wrote:

I know that my husband understands that there is something wrong with

me he just thinks that I shouldn't dwell on it. I know that he is

right but how can I not think about it? It's not like it is going to

go away. A couple of weeks ago I applied for a job to work as flight

attendant. I love to travel more than anything and I really need

this job. My husband is from Portugal and we could use the flight

benefits to visit his family. Having a job that enables me to

travel has always been a dream of mine. The problem is that now I am

beginning to doubt if I will be able to take this job (if I even get

it). It is physically demanding and requires us to re-locate to

Newark, NJ. We are living in Texas now where it is very hot and I am

afraid that if we move to a colder climate my condition will get

worse. Has anyone had problems with the cold? I know that I would

hate myself if I got the job and didn't give it a shot but what

happens if I take it and I get worse?

[Guest guest]

-

Just a thought.. I have to travel for my company, and

I have a hard time as a passenger, even.. the

attendants are usually very understand and will let me

hobble around in their work area during the flight

when I need to stretch, and the airlines have been

fairly accomodating with making adjustments so I can

get a front row seat or an exit row seat on the aisle,

but even with all that, after a couple of hours in the

air, I can no longer get comfortable at all no matter

what I do. Of course, a couple of Flexeril about 2

hours before the flight, and I can usually doze off

halfway there, so that's not always a major problem,

but I can see where it might be a concern for you if

you are working during the flight and getting into

pain.

Just something to think about. oh.. and warmth and

sun are supposed to be very good.. I live in Dallas,

and during the fall, when I was flying to places like

Detroit - I'd feel pretty good when I'd leave DFW, and

after landing in Detroit, I'd invariably in some

amount of pain/stiffness by the time I was at the car

rental shop, and wouldn't feel even halfway normal

again until I was back in Dallas.

Zaber

http://www.zaber.net

--- lesliesa@... wrote:

> I know that my husband understands that there is

> something wrong with

> me he just thinks that I shouldn't dwell on it. I

> know that he is

> right but how can I not think about it? It's not

> like it is going to

> go away. A couple of weeks ago I applied for a job

> to work as flight

> attendant. I love to travel more than anything and

> I really need

> this job. My husband is from Portugal and we could

> use the flight

> benefits to visit his family. Having a job that

> enables me to

> travel has always been a dream of mine. The problem

> is that now I am

> beginning to doubt if I will be able to take this

> job (if I even get

> it). It is physically demanding and requires us to

> re-locate to

> Newark, NJ. We are living in Texas now where it is

> very hot and I am

> afraid that if we move to a colder climate my

> condition will get

> worse. Has anyone had problems with the cold? I

> know that I would

> hate myself if I got the job and didn't give it a

> shot but what

> happens if I take it and I get worse?

>

>

>

>

>

__________________________________________________

[Guest guest]

Hi .

It sounds like you have a tough decision ahead of you. But that's life,

isn't it? Even if you didn't have the PA, I'm sure the relocation alone

would be a big decision. There aren't any guarantees with this disease, but

again, there aren't any guarantees ever. Factor in your disease with

everything else and make the best decision you can with your husband. That's

the only thing you can ask of yourself. You also might want to make sure

there are other industries in the area where you could get a job that would

agree with your PA if it gets worse.

As for dwelling on it, how can you not?! It affects every part of your life.

But it's how you dwell on it that counts. Be positive and proactive in

fighting it and you'll find people won't mind it as much. I know I get the

glazed over look from my partner and friends when I talk about it, but at

least they show an interest now that I've become involved in my wellness. I

actually get them asking me questions about food allergies where they used

to try and change the subject as quickly as possible. I guess my big advice

here is to make getting well your second full time job and not leave it up

to your doctors. Become a part of your own medical team. In doing this, I

have been able to increase my odds of succeeding at a job that I wouldn't be

able to handle if my disease gets worse. Also, include your husband in this.

It's in his own best interest that you get better. It will allow him to

appreciate the fact that you aren't crazy and that the pain and frustrations

you suffer is very real. I know you say he's supportive, but I had to drag

my partner into my healing process. Until I did, he really didn't get

it...supportive or not.

That's my two cents (more like 25), but I wish you the best in getting that

dream job and I hope you'll give me the FULL can of ginger ale when I ask.

hee hee

deano

> From: lesliesa@...

> Reply-

> Date: Sat, 07 Jul 2001 22:19:20 -0000

>

> Subject: [ ] Thanks for the support

>

> I know that my husband understands that there is something wrong with

> me he just thinks that I shouldn't dwell on it. I know that he is

> right but how can I not think about it? It's not like it is going to

> go away. A couple of weeks ago I applied for a job to work as flight

> attendant. I love to travel more than anything and I really need

> this job. My husband is from Portugal and we could use the flight

> benefits to visit his family. Having a job that enables me to

> travel has always been a dream of mine. The problem is that now I am

> beginning to doubt if I will be able to take this job (if I even get

> it). It is physically demanding and requires us to re-locate to

> Newark, NJ. We are living in Texas now where it is very hot and I am

> afraid that if we move to a colder climate my condition will get

> worse. Has anyone had problems with the cold? I know that I would

> hate myself if I got the job and didn't give it a shot but what

> happens if I take it and I get worse?

>

>

>

>

>

>

[Guest guest]

I would think twice before taking that job in Newark.... I live 20 minutes

from there .. And it is one of the worst airports.... The people are all

pushy , impatient, and complaining all the time..... And it always smells

like armpit in the place.... Plus it will be another thing to aggravate

your stress.... And that means PA will most likely get worse... More stress

almost always makes everything else worse....

If your husband is saying you shouldnt dwell on it , Thats terrible... It

sounds like he just doesnt want to believe that you have this disease...

How could you NOT dwell on something that causes you pain everyday?

mike in juyzee....

>Subject: Thanks for the support

>I know that my husband understands that there is something wrong with

>me he just thinks that I shouldn't dwell on it. I know that he is

>right but how can I not think about it? It's not like it is going to

>go away. A couple of weeks ago I applied for a job to work as flight

>attendant. I love to travel more than anything and I really need

>this job. My husband is from Portugal and we could use the flight

>benefits to visit his family. Having a job that enables me to

>travel has always been a dream of mine. The problem is that now I am

>beginning to doubt if I will be able to take this job (if I even get

>it). It is physically demanding and requires us to re-locate to

>Newark, NJ. We are living in Texas now where it is very hot and I am

>afraid that if we move to a colder climate my condition will get

>worse. Has anyone had problems with the cold? I know that I would

>hate myself if I got the job and didn't give it a shot but what

>happens if I take it and I get worse?

>

[Guest guest]

In a message dated 07/09/2001 1:52:07 AM Eastern Daylight Time,

shenry_123@... writes:

<< he just thinks that I shouldn't dwell on it. I know that he is

right but how can I not think about it? >>

Hi - I think there is a big difference between gathering information

to help you cope and sitting around thinking about how miserable PA has made

your life. Spending a lot of time getting good information and medical

advice is a good thing - a proactive way of handling your condition. Sitting

around dwelling on the negative and feeling sorry for yourself is a bad

thing. Now, I don't know which you are doing, but it seems like since you've

joined the group, you are looking for beneficial information and advice.

Maybe you could explain it to your husband that way?

[Guest guest]

Well, I have to go. My husband and I really want to get out of

Texas. I am going to give the flight attendant thing a shot (if I

even get it) and if things get bad I will just have to find something

else to do (on the ground). I have always been one for an adventure

and I am not going to let this stupid disease stop me. It makes me

so mad at myself to question my ability to follow through with my

dreams. I have always been a strong person and followed through full

force. I have just had so many doubts lately...Anyways, I had my

husband read some of the postings. He is opening up a bit. He just

doesn't want to see me give up. I know that it is hard for him to see

me hurting and there is nothing he can do to make it go away.

Anyways, thanks for listening.

[Guest guest]

> Anyways, thanks for listening.

>

>

>

>

That's great to hear ! I'm glad you are following your dreams. I

remember a while back someone posted about how he was young with PA and had

a little Miata. He often had to park in handicapped spaces and use his

placcard which would cause him a lot of hassle from passersby. At the end of

his post he said he knew it wasn't a good idea to drive a Miata because of

the impression it made. I say to heck with that thought process! Why can't

we drive little Miata's and be flight attendants if we want to be? I believe

in my heart that this disease is treatable. Keep those dreams alive and go

for it!

deano

[Guest guest]

I am on disability status, have had PA for 20+ years, recently had spinal

cord tumors removed and just bought a Miata. I decided that it was now or

never. I move real slow, get in an out very carefully and really enjoy

driving the Miata even with an automatic transmission. Can't be sure that

the feet and hands can handle the stick shift, so with that compromise I get

to enjoy the small sport car. I really don't care what others think about

it, it is for me and it gives me some fun. You only go around once.....don't

let PA win!

Bob in VA

[Guest guest]

Bob -

Amen to the Miata! I bought my 2000 last summer, and

while I've had a few regrets on really bad days (it is

not easy getting in and out.. once I'm in it, though,

I am fine).. Of course, I tend to get funny looks and

verbal assaults from older people when I pull into a

handicapped spot with the top down. I don't think

I'd trade it for anything, though.

--- B66F@... wrote:

> I am on disability status, have had PA for 20+

> years, recently had spinal

> cord tumors removed and just bought a Miata. I

> decided that it was now or

> never. I move real slow, get in an out very

> carefully and really enjoy

> driving the Miata even with an automatic

> transmission. Can't be sure that

> the feet and hands can handle the stick shift, so

> with that compromise I get

> to enjoy the small sport car. I really don't care

> what others think about

> it, it is for me and it gives me some fun. You only

> go around once.....don't

> let PA win!

>

> Bob in VA

>

>

> [Non-text portions of this message have been

> removed]

>

>

>

__________________________________________________

[Guest guest]

Bob, I was amazed when you said you recently had spinal cord tumors

removed. Last year I had a spinal cord tumor removed from my low

back. I was told this is really rare - 1 in a million. Now I am

wondering - is it possibly another manifestation of PA? I have had

this disease so long that it is easy to attribute everything to PA.

What did your doctor tell you about your tumor? Mine was a large

Lipoma very deep running parallel with my spine with tenticles

wrapping around the spine. It was not cancer - much to my relief.

My surgeon did not think I would have a recurrence. I also had a

spinal fusion surgery last year. Both of these surgeries caused a

major flare of my PA. Enjoy the Miata!! Lee

-- In @y..., B66F@a... wrote:

> I am on disability status, have had PA for 20+ years, recently had

spinal

> cord tumors removed and just bought a Miata. I decided that it was

now or

> never. I move real slow, get in an out very carefully and really

enjoy

> driving the Miata even with an automatic transmission. Can't be

sure that

> the feet and hands can handle the stick shift, so with that

compromise I get

> to enjoy the small sport car. I really don't care what others

think about

> it, it is for me and it gives me some fun. You only go around

once.....don't

> let PA win!

>

> Bob in VA

>

>

>

[Guest guest]

> Thanks to you all that were so quick with info and inspiration.

Just

> started the MTX. Have been on all kinds of stuff over the past 5

> years, from a very incompitant derm. So far all the side effects

from

> the MTX is a hot mouth,sore tounge, and dull headache. I am

hanging

> in there and am SO glad I found a site with such caring and

> informative info. I will be in here often. Again, thanks so much

for

> this site, I really needed it.

>

>

>

>

> [Moderator's note: You should also be taking at least 1 mg of Folic

acid each day along with the MTX. Ron]

Sorry, I never mentioned it but I am also on 1mg Folic Acid daily. No

NSAIDS have been perscribed as of yet. I have appt for follow up

blood draw on Monday 6/17, and another visit w/ derm on Wed 6/19.

Then he will raise my MTX if all bloodwork comes back OK. Anyone with

any suggestions to minimize the mouth/tongue pain from the MTX and

are there any over the counter NSAIDS safe to take until I see the

doc on Mon?

[Guest guest]

In a message dated 06/13/2002 3:04:21 PM Eastern Daylight Time,

teresah24@... writes:

> Anyone with

> any suggestions to minimize the mouth/tongue pain from the MTX

- B6 helps a little - so does Vit. e. I found an ointment with Lysine

that helped too - but it was expensive - $7 for a tiny tube. Good old campho

phenique helps too if you can get past the initial sting!

Good luck,

[

[Guest guest]

Thaks for the support Eddie..It is a hard thing that I am going through..I stay tired..ittitable..not speaking.verge of crying(that I hate)..HE sure don't undestand..Maybe if his as would go to work then I could deal with this better..At this point I just don't know!!Tubs46@... wrote: Janet It's hell doing the tx when your spouse understands, but when they don't , geez I couldn't imagine. Keep trying to im me i turn this thing on in the mornings and I listen to the music. So if I don't answer it's not cause I'm ignoring you. Hope you get some rest I can remember the long nights sitting in the chair with the dogs looking at me as if to ask "when the

hell you going to bed". Well that's not exactley what they said I'm paraphrasing a little. Take care sweety and keep the chin up! "Life is not a journey to the grave with the intention of arriving safely in a pretty and well-preserved body...but rather to skid in broadside, thoroughly used up, totally worn out, and loudly proclaiming, WOW! What a ride!"... Eddie HinmanJan

Photos – Showcase holiday pictures in hardcover Photo Books. You design it and we’ll bind it!

[Guest guest]

Hello and thank you,

This is exactly what I need. More good references, the voices of

experience, and a number in Zavie's Zero Club (bonus).

I will go to this appointment next Friday armed with info. I will see

the report from the BMB in October. Know that I can tolerate the 400

mg dose of Gleevec...so that's what I'll push for. Because this is a

long-term commitment, I need to be comfortable with it.

While the doctor of record is ph Drabick at Penn State Cancer

Center at MS Hershey Medical Center, I always see a Hematology

Oncology Fellow, Sulfikar Ibrahim. They had asked me to participate in

a clinical trial, as they should. (400 mg Gleevec, 800 mg Gleevec, or

dasatinib with Witold Rybka as Hershey's principal investigator). But

I never got past the initial insurance response of " we don't support

anything experimental " . Sure glad I didn't end up with the 800 mg Gleevec!

Will give an update after the appointment.

Martha B

dx April 2008

#1237 in Zavie's Zero Club