Re: question about career/lifestyle changes since Samters

[Guest guest]

>-

Hi ,

I have found it difficult to stay employed with this disease. There was one

job where I was often sneezing and would often have a coughing fit during

lunch. They let me go without an explanation and I believe it was due to my

health. I'm pretty sure I was reacting to someone's perfume.

I have decided to remain self employed for now so that I can have control of

the environment I'm in.

I was healthy too, when I got married. That is a tough one. Sometimes I

don't have the energy to be a good wife.

Sometimes I wonder if I will have a shorter life than I expected.

I understand.

Pam

[Guest guest]

, I spend so much time medicating, researching this disease and resting that I don't have time to feel sorry for myself or anyone else. When I'm feeling well, I rejoice and get out and do what I can. Sometimes that is merely lying on the couch and watching a movie and being able to breathe without coughing or blowing my nose for a few hours. I admit, I am not suffering quite as much as you, but yesterday I had to leave work a few hours, early, hit the drug store and give myself two breathing treatments and spend the rest of the evening taking it easy. I would have preferred to stay at work, or hit the gym, or go out with friends. But you know what? It wasn't the end of the world. And I may have missed out on someone who used my health as an excuse for not continuing a relationship. Convenient? True? Do I care? I really can't at this

point, but I'm not married so I don't speak for you on this aspect. I'm 46 next month. For me, Samter's prolonged my post graduate studies(taken up 7 years ago) but I made it through somehow, and now I am looking forward to taking the bar exam in July. I plan to study as much as I can and as my health will allow. I start each day as if it will be better than the last or not as bad as the worst. Who knows, I might wake up one day and be better. I will certainly have eliminated the stress component from allowing it to keep me from my life's goals. It is a big part of my life, but I will not relinquish all control to it. Maybe when I take the exam I'll need a special accommodation so I don't disturb others with coughing, I don't know. Perhaps I'll be too ill to take it on those three days. And if that is the case, so be it and I will try again next time. None of knows what the future

holds. I am thankful for what I have accomplished. I have a wonderful teenage son who knows how to calm me down when I'm having an attack, gets me my inhaler and tells me to focus on something else and flips on the TV for me. It works sometimes, and I am grateful for his ability to cope with mom's distress. I'm delighted that I have the healthy days to take him shopping or take him and his friends to the skate park. Last month, I actually was out on the ice rink with him. I didn't know how it would go. I lasted almost an hour and decided that was enough of tempting fate. We both had a good time. Samter's suffererers are no different from anyone else who grapples daily with a debilitating disease. I take stock in the fact that it will probably not cause an early death, and that I don't have something worse. I'm relieved that I don't have cancer, or

diabetes, or epilepsy. Not to make light of our plight, but there are worse things that can happen to everyone. Maybe you'll enjoy nursing and thrive at it. Maybe your husband will develop some compassion. Maybe one day he too, will be ill and require YOU to make sacrifices. Isn't if "for sickness and in health?" You and he hopefully will have long and healthy lives together and many social events to come. So, just some thoughts on what I have to use to keep my going. I hope I didn't bore everyone. toni susan_ayers27 <sayers@...> wrote: Hi Everyone,First, I apologize if this message posts twice..seems to happen when I post and I'm not sure why. I'm looking for some feedback from

anyone who has had to make major changes in their careers and/or lifestyles to accommodate the "pleasures" of Samters.I'm entering my 10th year with Samters and am in my late 40s. I feel as though I have lost so much because of this disease and needed to hear from others about how to cope.I am a college professor and have resigned my tenured position primarily because I just don't seem to be well enough to do a good job in the classroom. My patience with students has dropped as the intensity and frequency of my sinus headaches has gradually increased. I have to take more sick days when I can't breathe well enough or the pain in my head is too great. Although I am excited about starting a new career...nursing research after getting my RN...I am also fearful that I just won't be able to hold down any kind of full-time job. In addition, I may be kidding myself to think that I can even pass

the wellness criteria required to get into nursing school.On the personal front, my husband is getting tired of having to make excuses for his sick wife opting out of social occasions with friends when symptoms are bad. He thought he was marrying an outdoorsy, athletic person; but now he has a wife who spends entirely too much time in bed and can barely walk a mile on flat terrain at a fairly slow pace.You get the picture...I'm sure many of you have similar concerns/fears, and I'm wondering how you cope with it. I sometimes wonder whether I'll eventually be living on welfare, alone, if things keep going the way they are right now.Sorry to complain...just running out of patience with this mess. I guess I just want to know if anyone else out there has had this downward spiral in their "non-medical" life and, given that we have to live with the limitations that Samters imposes, how do you do it

without throwing in the towel? in CA

Photos Got holiday prints? See all the ways to get quality prints in your hands ASAP.

[Guest guest]

Dear , I understand where you are completely. I am a first grade

teacher. I love the job but feel so lousy most of the time and I have often

wondered if I should do something else, get away from kids with colds and

dirty dusty school buildings. I wonder if I stayed home and didn't work if

the quality of my life would improve. I seem to have just barely enough

energy to get through the work day and nothing left for my family.it is very

frustrating.

question about career/lifestyle changes since Samters

> Hi Everyone,

>

> First, I apologize if this message posts twice..seems to happen when

> I post and I'm not sure why. I'm looking for some feedback from

> anyone who has had to make major changes in their careers and/or

> lifestyles to accommodate the " pleasures " of Samters.

>

> I'm entering my 10th year with Samters and am in my late 40s. I feel

> as though I have lost so much because of this disease and needed to

> hear from others about how to cope.

>

> I am a college professor and have resigned my tenured position

> primarily because I just don't seem to be well enough to do a good

> job in the classroom. My patience with students has dropped as the

> intensity and frequency of my sinus headaches has gradually

> increased. I have to take more sick days when I can't breathe well

> enough or the pain in my head is too great. Although I am excited

> about starting a new career...nursing research after getting my

> RN...I am also fearful that I just won't be able to hold down any

> kind of full-time job. In addition, I may be kidding myself to think

> that I can even pass the wellness criteria required to get into

> nursing school.

>

> On the personal front, my husband is getting tired of having to make

> excuses for his sick wife opting out of social occasions with friends

> when symptoms are bad. He thought he was marrying an outdoorsy,

> athletic person; but now he has a wife who spends entirely too much

> time in bed and can barely walk a mile on flat terrain at a fairly

> slow pace.

>

> You get the picture...I'm sure many of you have similar

> concerns/fears, and I'm wondering how you cope with it. I sometimes

> wonder whether I'll eventually be living on welfare, alone, if things

> keep going the way they are right now.

>

> Sorry to complain...just running out of patience with this mess. I

> guess I just want to know if anyone else out there has had this

> downward spiral in their " non-medical " life and, given that we have

> to live with the limitations that Samters imposes, how do you do it

> without throwing in the towel?

>

> in CA

>

>

>

>

>

>

>

>

>

[Guest guest]

Dear , I understand where you are completely. I am a first grade

teacher. I love the job but feel so lousy most of the time and I have often

wondered if I should do something else, get away from kids with colds and

dirty dusty school buildings. I wonder if I stayed home and didn't work if

the quality of my life would improve. I seem to have just barely enough

energy to get through the work day and nothing left for my family.it is very

frustrating.

question about career/lifestyle changes since Samters

> Hi Everyone,

>

> First, I apologize if this message posts twice..seems to happen when

> I post and I'm not sure why. I'm looking for some feedback from

> anyone who has had to make major changes in their careers and/or

> lifestyles to accommodate the " pleasures " of Samters.

>

> I'm entering my 10th year with Samters and am in my late 40s. I feel

> as though I have lost so much because of this disease and needed to

> hear from others about how to cope.

>

> I am a college professor and have resigned my tenured position

> primarily because I just don't seem to be well enough to do a good

> job in the classroom. My patience with students has dropped as the

> intensity and frequency of my sinus headaches has gradually

> increased. I have to take more sick days when I can't breathe well

> enough or the pain in my head is too great. Although I am excited

> about starting a new career...nursing research after getting my

> RN...I am also fearful that I just won't be able to hold down any

> kind of full-time job. In addition, I may be kidding myself to think

> that I can even pass the wellness criteria required to get into

> nursing school.

>

> On the personal front, my husband is getting tired of having to make

> excuses for his sick wife opting out of social occasions with friends

> when symptoms are bad. He thought he was marrying an outdoorsy,

> athletic person; but now he has a wife who spends entirely too much

> time in bed and can barely walk a mile on flat terrain at a fairly

> slow pace.

>

> You get the picture...I'm sure many of you have similar

> concerns/fears, and I'm wondering how you cope with it. I sometimes

> wonder whether I'll eventually be living on welfare, alone, if things

> keep going the way they are right now.

>

> Sorry to complain...just running out of patience with this mess. I

> guess I just want to know if anyone else out there has had this

> downward spiral in their " non-medical " life and, given that we have

> to live with the limitations that Samters imposes, how do you do it

> without throwing in the towel?

>

> in CA

>

>

>

>

>

>

>

>

>

[Guest guest]

,

I am with you 100%! It sounds weird, but I was so glad when I found this

group and other people having the same problems and issues that I was

facing. It doesn't make it easier but it is reassuring to know that you

just aren't " crazy " ;-)

I was VERY active until this dreaded sickness came along in 1992 @ the age

of 30. I did all kinds of outdoor activiites(camp, hike, hunt, fish, etc.),

worked around the house, worked 60+ hours a week and still had time for my

family. It just " killed " me when I couldn't even mow our lawn and I had to

find someone to do it for me.

Luckily, I own my own business and have a couple employees who understand

that there are times when I just can't do anything. I always warn them when

I am taking prednisone so that can prepared for the mood swings. I don't

really work any less but it helps to be able to have flexible hours.

Neither of my daughters were old enough to know the " real dad " so they are

used to having to help me with things. My wife is also understanding

because she knows that it has to be pretty bad for me to ask for help and

she knows somewhat how I feel because she has Crohn's.

I do have times that really get to me and I get so sick (no pun intended) of

this disease. But as time goes by(14 years), I am learning to deal with it.

For one thing, I have picked up wine making as a hobby. It is not too

strenuous, is extremely interesting and things seem a little better after a

glass or two of homemade wine!

Just wanted to add my 2 cents and let you know that you are not alone.

Rob

question about career/lifestyle changes since Samters

Hi Everyone,

First, I apologize if this message posts twice..seems to happen when I post

and I'm not sure why. I'm looking for some feedback from anyone who has had

to make major changes in their careers and/or lifestyles to accommodate the

" pleasures " of Samters.

I'm entering my 10th year with Samters and am in my late 40s. I feel as

though I have lost so much because of this disease and needed to hear from

others about how to cope.

I am a college professor and have resigned my tenured position primarily

because I just don't seem to be well enough to do a good job in the

classroom. My patience with students has dropped as the intensity and

frequency of my sinus headaches has gradually increased. I have to take

more sick days when I can't breathe well enough or the pain in my head is

too great. Although I am excited about starting a new career...nursing

research after getting my RN...I am also fearful that I just won't be able

to hold down any kind of full-time job. In addition, I may be kidding

myself to think that I can even pass the wellness criteria required to get

into nursing school.

On the personal front, my husband is getting tired of having to make excuses

for his sick wife opting out of social occasions with friends when symptoms

are bad. He thought he was marrying an outdoorsy, athletic person; but now

he has a wife who spends entirely too much time in bed and can barely walk a

mile on flat terrain at a fairly slow pace.

You get the picture...I'm sure many of you have similar concerns/fears, and

I'm wondering how you cope with it. I sometimes wonder whether I'll

eventually be living on welfare, alone, if things keep going the way they

are right now.

Sorry to complain...just running out of patience with this mess. I guess I

just want to know if anyone else out there has had this downward spiral in

their " non-medical " life and, given that we have to live with the

limitations that Samters imposes, how do you do it without throwing in the

towel?

in CA

[Guest guest]

one thing that has helped my energy level. and made me feel a lot

better was simply reading this book

http://www.youtheownersmanual.com/large.htm

it might help you too.

>

> Hi Everyone,

>

> First, I apologize if this message posts twice..seems to happen

when

> I post and I'm not sure why. I'm looking for some feedback from

> anyone who has had to make major changes in their careers and/or

> lifestyles to accommodate the " pleasures " of Samters.

>

> I'm entering my 10th year with Samters and am in my late 40s. I

feel

> as though I have lost so much because of this disease and needed to

> hear from others about how to cope.

>

> I am a college professor and have resigned my tenured position

> primarily because I just don't seem to be well enough to do a good

> job in the classroom. My patience with students has dropped as the

> intensity and frequency of my sinus headaches has gradually

> increased. I have to take more sick days when I can't breathe well

> enough or the pain in my head is too great. Although I am excited

> about starting a new career...nursing research after getting my

> RN...I am also fearful that I just won't be able to hold down any

> kind of full-time job. In addition, I may be kidding myself to

think

> that I can even pass the wellness criteria required to get into

> nursing school.

>

> On the personal front, my husband is getting tired of having to

make

> excuses for his sick wife opting out of social occasions with

friends

> when symptoms are bad. He thought he was marrying an outdoorsy,

> athletic person; but now he has a wife who spends entirely too much

> time in bed and can barely walk a mile on flat terrain at a fairly

> slow pace.

>

> You get the picture...I'm sure many of you have similar

> concerns/fears, and I'm wondering how you cope with it. I

sometimes

> wonder whether I'll eventually be living on welfare, alone, if

things

> keep going the way they are right now.

>

> Sorry to complain...just running out of patience with this mess. I

> guess I just want to know if anyone else out there has had this

> downward spiral in their " non-medical " life and, given that we have

> to live with the limitations that Samters imposes, how do you do it

> without throwing in the towel?

>

> in CA

>

[Guest guest]

I also made a drastic career change. I worked for 3 years with severe symptoms. I then quit my job in accounting and took off a few months. (luckily my mom was able to borrow me money to do this). I then babysat in my home (I was afraid to work away from home since I associated getting so sick with working at a company). I did this for 3 years and realized that the hours were so long and all winter the kids had colds, and I had never ending sinus infections. Well I then started a strawberry farm and have been doing this for 3 years. Although summer is exhausting and sometimes I feel like I just can't do it anymore, I then concentrate on the fact that I have Dec. through March to recouperate. Winter is my absolute worst time of year so it's nice to be able to lay down whenever I need to. I feel for all of you who don't have the opportunity to take time off when you need to. I've been there and it really sucks. I still have so many issues with this disease, from accepting the fact that just because it isn't cancer or ms etc. doesn't mean that it's not as devastating to telling myself it's okay to take some time off for resting. I developed alot of fears from this illness too. I stopped going places, getting together with friends, staying out late etc. I am currently taking my life back and am starting to get together with friends. It's not easy because when I feel like crap I don't want to be around anyone. I often wonder if I should go to pain management classes. Has anyone tried them?

Tami

---- Original Message -----

From: susan_ayers27

samters

Sent: Wednesday, January 11, 2006 10:43 AM

Subject: question about career/lifestyle changes since Samters

Hi Everyone,First, I apologize if this message posts twice..seems to happen when I post and I'm not sure why. I'm looking for some feedback from anyone who has had to make major changes in their careers and/or lifestyles to accommodate the "pleasures" of Samters.I'm entering my 10th year with Samters and am in my late 40s. I feel as though I have lost so much because of this disease and needed to hear from others about how to cope.I am a college professor and have resigned my tenured position primarily because I just don't seem to be well enough to do a good job in the classroom. My patience with students has dropped as the intensity and frequency of my sinus headaches has gradually increased. I have to take more sick days when I can't breathe well enough or the pain in my head is too great. Although I am excited about starting a new career...nursing research after getting my RN...I am also fearful that I just won't be able to hold down any kind of full-time job. In addition, I may be kidding myself to think that I can even pass the wellness criteria required to get into nursing school.On the personal front, my husband is getting tired of having to make excuses for his sick wife opting out of social occasions with friends when symptoms are bad. He thought he was marrying an outdoorsy, athletic person; but now he has a wife who spends entirely too much time in bed and can barely walk a mile on flat terrain at a fairly slow pace.You get the picture...I'm sure many of you have similar concerns/fears, and I'm wondering how you cope with it. I sometimes wonder whether I'll eventually be living on welfare, alone, if things keep going the way they are right now.Sorry to complain...just running out of patience with this mess. I guess I just want to know if anyone else out there has had this downward spiral in their "non-medical" life and, given that we have to live with the limitations that Samters imposes, how do you do it without throwing in the towel? in CA

[Guest guest]

This is to in Ca: : I had to write back. Your email struck such a

cord with me. I have had samters since 1993. I was in my tenth year of

medical practice and going strong when it hit like a ton of bricks. I was

running a busy practice, had two young children, consulted at three

hospitals and had an intensive hospital practice at one. Since I got this

disease my non medical life has spiraled downward. I can no longer do the

things I once did and am no longer active. I mostly opt out of social

engagements. Fortunately my husband is ten years older and he doesn't mind-

he is homebody anyway. About 1996 I got hit with a second autoimmune

disease that also affect sinuses and lungs as well as nerves, brain, and

heart, skin and somtimes GI tract. That put the icing on the cake. I am on

permanant disability now. It does allow me to do a tiny bit of work hours if

I feel up to it. Usually I don;t. At least if I feel horrid I can rest. I

wish I knew the defect or alteration in the immune system that is affected

by Samters that causes such sever fatigue ( and it does) I truly feel for

you. Carol in Ca.

question about career/lifestyle changes since Samters

>

>

>> Hi Everyone,

>>

>> First, I apologize if this message posts twice..seems to happen when

>> I post and I'm not sure why. I'm looking for some feedback from

>> anyone who has had to make major changes in their careers and/or

>> lifestyles to accommodate the " pleasures " of Samters.

>>

>> I'm entering my 10th year with Samters and am in my late 40s. I feel

>> as though I have lost so much because of this disease and needed to

>> hear from others about how to cope.

>>

>> I am a college professor and have resigned my tenured position

>> primarily because I just don't seem to be well enough to do a good

>> job in the classroom. My patience with students has dropped as the

>> intensity and frequency of my sinus headaches has gradually

>> increased. I have to take more sick days when I can't breathe well

>> enough or the pain in my head is too great. Although I am excited

>> about starting a new career...nursing research after getting my

>> RN...I am also fearful that I just won't be able to hold down any

>> kind of full-time job. In addition, I may be kidding myself to think

>> that I can even pass the wellness criteria required to get into

>> nursing school.

>>

>> On the personal front, my husband is getting tired of having to make

>> excuses for his sick wife opting out of social occasions with friends

>> when symptoms are bad. He thought he was marrying an outdoorsy,

>> athletic person; but now he has a wife who spends entirely too much

>> time in bed and can barely walk a mile on flat terrain at a fairly

>> slow pace.

>>

>> You get the picture...I'm sure many of you have similar

>> concerns/fears, and I'm wondering how you cope with it. I sometimes

>> wonder whether I'll eventually be living on welfare, alone, if things

>> keep going the way they are right now.

>>

>> Sorry to complain...just running out of patience with this mess. I

>> guess I just want to know if anyone else out there has had this

>> downward spiral in their " non-medical " life and, given that we have

>> to live with the limitations that Samters imposes, how do you do it

>> without throwing in the towel?

>>

>> in CA

>>

>>

>>

>>

>>

>>

>>

>>

>>

[Guest guest]

Thanks so much to all of you who posted in response to my email. I

always find a way to physically deal with Samters, but

emotionally, ...well, you know.

Somehow just knowing you guys understand means so much.

Again, many thanks!

in CA

[Guest guest]

,

This is a very complex issue and there are no easy answers to it. I

have been struggling with it for so long and found different ways to

cope at different times in my life.

I am not even completely sure how to respond to it, because it is in

some ways a never-ending struggle. But I do think one important

thing is to get the negative images out of your mind, because it is

possible for them to happen, especially if that is what you are

visualizing.

I have made a lot of lifestyle changes. The best ones are the ones

you make intentionally, I have to say! And it has taken me many

years to get to the point where I feel I am making the decisions

rather than the decisions happening because I let things get out of

control. I got Samters while in college and I ended up missing a

lot of classes and one semester had to drop out, but somehow I

managed to graduate on time. It was not easy. I ended up very

depressed and frustrated.

I took a year off and lived at home with my parents, but that was a

disaster and my symptoms certainly weren't any better. I came to

New York for graduate school, which was a tough program to begin

with. I ended up doing a two-year program in four years. But that

was okay, because I finished, and I was starting to realize I have

limitations. At some point during graduate school a great doctor

who was seeing me for free because I had no money and was so sick

(!) told me about the aspirin desensitization, and for me that was

the beginning of a ten-year journey to better health.

I was desensitized twice, in 1995 and 1998. The first time I didn't

have surgery right before hand, so that's why I needed the second

desensitization because I went off the aspirin for another surgery.

I ended up getting breast cancer in 2002 and went off the aspirin

permanently, but seven years on aspirin gave me some time to make

other adjustments in my life without being deathly ill and in the

hospital all the time. My asthma was the main problem with the

Samters for many years, it was so severe at times I could hardly

function and was in the hospital for weeks out of every year.

Anyway, I think the most important thing if you want to lead an

active, healthy life is to maximize your treatment. I believe the

asthma and polyps interact, so even when one is not bothering me I

really try to stay on top of my treatment. I almost never miss a

dose of my Advair, and that's the only asthma medication I take now

except Singulair. I really take the Singulair for the polyps.

Before this group I never knew about nasal irrigation, and I have

just gotten a Water Pik and I'll be getting the adaptor. But I've

been using a hypertonic saline spray. I think everyone will find

some nutritional influences, and I try to eat as well as I can

(sugar is my weakness) and also exercise. And REST. You have to

allow yourself to rest and NOT feel guilty about it. Otherwise it

will not be restful. And we most definitely need more rest than

other people.

There are lots of books about chronic illness that can be helpful.

I don't have any particular ones in mind at the moment. Some day I

think I will write one! I think meditation is helpful, and

meditation and music tapes (Some good ones at

www.healthjourneys.com, although not specific to Samters).

It is hardest for me to cut back on activities, but I have to do it

and I am trying to do it more and more and more. Having a chronic

illness can teach us what is important in life, and I struggle year

to year to weed out and decide what my priorities truly are and do

those things and leave the others behind. Financial security has

been a big one for me, so right now I do work a lot and end up

having less time for many other things I would like to do. But I

realize it makes me feel better to have the financial security

(which is not much security, but I'm on the way!) and so that is

what I do. I try to only do what makes me feel good in the short

and long term. In particular this has involved cutting out a lot of

people in my life who were negative influences. That is SO HARD to

do! But maybe even when you feel good if you can cut back on the

social things that are not the ones you reallly want to do, you will

feel well enough when the other things come up that you really want

to do.

I do spend some time grieving, too. I have moments when I am

feeling so rotten and just need to rest, and there is something I

had planned to attend for months, and I just can't go. And so I end

up staying home and crying about it. But I do try to get the rest

in and not stress, although it is easier said than done.

I hope some of this is helpful to you. Certainly I hope you will

know that you are not alone in what you are going through. There is

a lot more to this, I've only touched the surface in this long, long

post. Oh, I also have a very supportive therapist who I see on

an " as-needed " basis. She suffers from a chronic illness (diabetes)

so she can understand a bit better what I go through.

Lori in NY

[Guest guest]

Hi ,

I printed off peoples responses for my husband to read. It helped him to understand that I'm not just being lazy, I'm tired because of my illness. We'll see if it helps in the future.

Tami

Re: question about career/lifestyle changes since Samters

Thanks so much to all of you who posted in response to my email. I always find a way to physically deal with Samters, but emotionally, ...well, you know.Somehow just knowing you guys understand means so much.Again, many thanks! in CA