Overwhelmed

[Guest guest]

I think its all sinking in for me now, the disease, the

meds, the lifestyle changes, etc. etc. and it’s really starting to overwhelm me

and I’m having crying spells.

It seems every week a new side effect pops up and I don’t

know which med is causing it. I’m on Prednisone, Azathioprine and Acetylcysteine

(NAC). Last week my blood tests revealed

an elevated level of Neutrophils (8.07) and low levels of Lmphocytes (1.17),

just barely above the normal range (1.0). I contacted my doctor’s office and he

is on vacation until the 24th and the nurse said not to worry about it right

now. I guess I’ll just see what this

week’s tests reveal.

I’m experiencing foot, leg, hip and finger cramps.

This week food is not only tasteless, but actually has a bad taste, foods I normally love and then I just can’t eat it.

I’m involved in two big projects with daily deadlines at

work and the stress keeps me wired-up. I’ve always loved the work I do and the

pressure, but now it seems to irritate me.

It feels like people look at me different. Most of my

co-workers know about my disease and some will ask me about it and how I’m

doing and others ignore everything about me.

Because I’ve been so focused on my disease I’ m falling

behind in domestic chores, errands, and other appointments that need to be

done.

Goals and future dreams crushed. My counselor said I need to

make new dreams. But I can’t seem to do

that yet.

I do try to focus on my blessings and am thankful for what I

do have, like my children, friends, this support group, my dog, my home, my

job, my health insurance and many more.

I guess I just needed to vent.

C_53_IPF_5/09Washington-the-Evergreen-state

[Guest guest]

I hear you and I feel your pain. I'll pray for the peace that only He can give.Amen! Overwhelmed

I think its all sinking in for me now, the disease, themeds, the lifestyle changes, etc. etc. and it’s really starting to overwhelm meand I’m having crying spells.

It seems every week a new side effect pops up and I don’tknow which med is causing it. I’m on Prednisone, Azathioprine and Acetylcysteine(NAC). Last week my blood tests revealedan elevated level of Neutrophils (8.07) and low levels of Lmphocytes (1.17),just barely above the normal range (1.0). I contacted my doctor’s office and heis on vacation until the 24th and the nurse said not to worry about it rightnow. I guess I’ll just see what thisweek’s tests reveal.

I’m experiencing foot, leg, hip and finger cramps.

This week food is not only tasteless, but actually has a bad taste, foods I normally love and then I just can’t eat it.

I’m involved in two big projects with daily deadlines atwork and the stress keeps me wired-up. I’ve always loved the work I do and thepressure, but now it seems to irritate me.

It feels like people look at me different. Most of myco-workers know about my disease and some will ask me about it and how I’mdoing and others ignore everything about me.

Because I’ve been so focused on my disease I’ m fallingbehind in domestic chores, errands, and other appointments that need to bedone.

Goals and future dreams crushed. My counselor said I need tomake new dreams. But I can’t seem to dothat yet.

I do try to focus on my blessings and am thankful for what Ido have, like my children, friends, this support group, my dog, my home, myjob, my health insurance and many more.

I guess I just needed to vent.

C_53_IPF_5/09Washington-the-Evergreen-state

[Guest guest]

, I'm sorry that you are feeling so overwhelmed, go ahead and vent, we all do at one time or another, it helps it really does. Obviously stress is rearing its ugly head and hitting you hard. I understand how work that seemed so important only a while ago now means next to nothing when all you can think about is how much longer do I really have. I wish I had answers for you. You know all the regulars, breath deep (I always get a chuckle out of that one-if we could breathe deeply we wouldn't be in this mess!) close your eyes and go to your happy place for 5 minutes, try really hard not to feel bad about asking for some "me" time. And try really hard to stay calm every time a new irritating symptom pops up. Sometimes locking yourself in the bedroom and ranting and raving and crying is really what you need to do. This disease robs us of a lot of our future and we have every right to be mad about it. Then remember how much your family loves you and we love you. Hang in there....Dyane Phoenix IPF 02>> I think its all sinking in for me now, the disease, the> meds, the lifestyle changes, etc. etc. and it’s really starting to overwhelm me> and I’m having crying spells. > > It seems every week a new side effect pops up and I don’t> know which med is causing it. I’m on Prednisone, Azathioprine and Acetylcysteine> (NAC). Last week my blood tests revealed> an elevated level of Neutrophils (8.07) and low levels of Lmphocytes (1.17),> just barely above the normal range (1.0). I contacted my doctor’s office and he> is on vacation until the 24th and the nurse said not to worry about it right> now. I guess I’ll just see what this> week’s tests reveal. > I’m experiencing foot, leg, hip and finger cramps. > This week food is not only tasteless, but actually has a bad taste, foods I normally love and then I just can’t eat it. > I’m involved in two big projects with daily deadlines at> work and the stress keeps me wired-up. I’ve always loved the work I do and the> pressure, but now it seems to irritate me. > It feels like people look at me different. Most of my> co-workers know about my disease and some will ask me about it and how I’m> doing and others ignore everything about me.> Because I’ve been so focused on my disease I’ m falling> behind in domestic chores, errands, and other appointments that need to be> done.> Goals and future dreams crushed. My counselor said I need to> make new dreams. But I can’t seem to do> that yet. > I do try to focus on my blessings and am thankful for what I> do have, like my children, friends, this support group, my dog, my home, my> job, my health insurance and many more.> I guess I just needed to vent.> C_53_IPF_5/09> Washington-the-Evergreen-state>

[Guest guest]

And one more thing...I cut my finger over a week ago and it still hasn't healed or scabbed over, what's with that? C_53_IPF_5/09Washington-the-Evergreen-state

[Guest guest]

, You said that you didn't know what Imuran is. It is Azathioprine. Imuran is it's non generic name. I'm surprised that you are on it already. I'm sorry you've had such a bad day. I plan on doing whatever I can for as long as I can. Oxygen can be confining but there are ways to work out a lot of things with it. I just went out on a sailboat for 5 days and I plan on doing it again the first of September. Only 3 days were out on the water but that is better thasn no days. I used to be able to go out for 2 or 3 weeks. Maybe if I had a generator I still could. I'd have to have a small concentrater though. Just ry to think about what you can do and not what you can't do. Venting is Okay and even good. Beverley Joy,71, UIP,NSIP 1-09,Diabetes,Sjogren's,Fibromyalgia IdahoSubject: OverwhelmedTo: "Breath Support" <Breathe-Support >Date: Monday, August 10, 2009, 8:00 PM

I think its all sinking in for me now, the disease, the

meds, the lifestyle changes, etc. etc. and it’s really starting to overwhelm me

and I’m having crying spells.

It seems every week a new side effect pops up and I don’t

know which med is causing it. I’m on Prednisone, Azathioprine and Acetylcysteine

(NAC). Last week my blood tests revealed

an elevated level of Neutrophils (8.07) and low levels of Lmphocytes (1.17),

just barely above the normal range (1.0). I contacted my doctor’s office and he

is on vacation until the 24th and the nurse said not to worry about it right

now. I guess I’ll just see what this

week’s tests reveal.

I’m experiencing foot, leg, hip and finger cramps.

This week food is not only tasteless, but actually has a bad taste, foods I normally love and then I just can’t eat it.

I’m involved in two big projects with daily deadlines at

work and the stress keeps me wired-up. I’ve always loved the work I do and the

pressure, but now it seems to irritate me.

It feels like people look at me different. Most of my

co-workers know about my disease and some will ask me about it and how I’m

doing and others ignore everything about me.

Because I’ve been so focused on my disease I’ m falling

behind in domestic chores, errands, and other appointments that need to be

done.

Goals and future dreams crushed. My counselor said I need to

make new dreams. But I can’t seem to do

that yet.

I do try to focus on my blessings and am thankful for what I

do have, like my children, friends, this support group, my dog, my home, my

job, my health insurance and many more.

I guess I just needed to vent.

C_53_IPF_5/09Washington-the- Evergreen- state

[Guest guest]

,

This may not be what you want to hear but you would be something other than human if you weren't having crying spells right now. You are grieving everything you thought your life was going to be. There is no way you ever imagined that this kind of illness was in your future and it's going to take time and patience to reach a place where you have more peace about it.

I went through it just about exactly 3 years ago. I was not able to go back to working full time at my old job after my diagnosis. (I did go back to my office for 2 days that summer to attempt it...unmitigated disaster. I could not concentrate at all, bringing oxygen in and out was difficult and everyone else was extremely uncomfortable with me there. Couple that with the sheer exhaustion at the end of each of those days, it just wasn't something I could handle)

Allow yourself to have and express those feelings. They are normal and appropriate. Not to mention that mood swings are a common side effect of prednisone. Be patient with yourself and don't expect too much. If you have to give 110% at work than someone else will have to pick up the slack at home. You can no longer do it all. Someone said that having this disease (or any other serious diagnosis I would think) is a full time job all by itself. I think that is as true as anything I've ever heard.

Please use us as a sounding board. If you need to talk to someone who will understand look up someones phone number in the contact list and pick up the phone. It helps to know that someone else "gets it".

Hugs,

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breath Support <Breathe-Support >Sent: Monday, August 10, 2009 11:00:26 PMSubject: Overwhelmed

I think its all sinking in for me now, the disease, the meds, the lifestyle changes, etc. etc. and it’s really starting to overwhelm me and I’m having crying spells.

It seems every week a new side effect pops up and I don’t know which med is causing it. I’m on Prednisone, Azathioprine and Acetylcysteine (NAC). Last week my blood tests revealed an elevated level of Neutrophils (8.07) and low levels of Lmphocytes (1.17), just barely above the normal range (1.0). I contacted my doctor’s office and he is on vacation until the 24th and the nurse said not to worry about it right now. I guess I’ll just see what this week’s tests reveal.

I’m experiencing foot, leg, hip and finger cramps.

This week food is not only tasteless, but actually has a bad taste, foods I normally love and then I just can’t eat it.

I’m involved in two big projects with daily deadlines at work and the stress keeps me wired-up. I’ve always loved the work I do and the pressure, but now it seems to irritate me.

It feels like people look at me different. Most of my co-workers know about my disease and some will ask me about it and how I’m doing and others ignore everything about me.

Because I’ve been so focused on my disease I’ m falling behind in domestic chores, errands, and other appointments that need to be done.

Goals and future dreams crushed. My counselor said I need to make new dreams. But I can’t seem to do that yet.

I do try to focus on my blessings and am thankful for what I do have, like my children, friends, this support group, my dog, my home, my job, my health insurance and many more.

I guess I just needed to vent.

C_53_IPF_5/09Washington-the- Evergreen- state

[Guest guest]

WOW - We are so much on the same wavelength! Yesterday, driving home from

work, I suddenly got so depressed- I go to a psychiatrist and am on Zoloft and

it really semms to help. But I don't know why this cloud fell over me. I goofed

up with filling my portable O2 and because it was so hot and humid yesterday, I

stayed in for lunch. When I got home, my husband (he works from home) didn't

have the AC on- that's when I really freaked out. My son came home from work and

HE started screaming at him. As soon as the AC cooled the room, I felt better

and having dinner with all 3 kids made me feel " normal " again. But now I'm

wondering if I need to be on O2 24/7. I can't get used to the fact that I have

to pay so much attention to my breathing- and that I spend the day in a

what-was-that mode. Another words I took a deep breath a half hour ago and it's

like the pain from the exertion just keeps resonating in my chest so I'll try

not to do that again! Plus my " lung hiccups " for lack of a better name drive me

crazy. This is the worst nightmare and no one I explain this to seems to know

what I'm talking about. Thank God for this group and rest assured - you are

not alone- vent here anytime!

nne, 55, ILD-6/09

>

> I think its all sinking in for me now, the disease, the

> meds, the lifestyle changes, etc. etc. and it’s really starting to overwhelm

me

> and I’m having crying spells.

>

> It seems every week a new side effect pops up and I don’t

> know which med is causing it. I’m on Prednisone, Azathioprine and

Acetylcysteine

> (NAC). Last week my blood tests revealed

> an elevated level of Neutrophils (8.07) and low levels of Lmphocytes (1.17),

> just barely above the normal range (1.0). I contacted my doctor’s office and

he

> is on vacation until the 24th and the nurse said not to worry about it right

> now. I guess I’ll just see what this

> week’s tests reveal.

> I’m experiencing foot, leg, hip and finger cramps.

> This week food is not only tasteless, but actually has a bad taste, foods I

normally love and then I just can’t eat it.

> I’m involved in two big projects with daily deadlines at

> work and the stress keeps me wired-up. I’ve always loved the work I do and

the

> pressure, but now it seems to irritate me.

> It feels like people look at me different. Most of my

> co-workers know about my disease and some will ask me about it and how I’m

> doing and others ignore everything about me.

> Because I’ve been so focused on my disease I’ m falling

> behind in domestic chores, errands, and other appointments that need to be

> done.

> Goals and future dreams crushed. My counselor said I need to

> make new dreams. But I can’t seem to do

> that yet.

> I do try to focus on my blessings and am thankful for what I

> do have, like my children, friends, this support group, my dog, my home, my

> job, my health insurance and many more.

> I guess I just needed to vent.

> C_53_IPF_5/09

> Washington-the-Evergreen-state

>

[Guest guest]

I understand all to well as I felt the same way.. just vent here and also

remember you are not alone.

Try and not dwell on how you are feeling or the diagnosis sorry spelling isnt my

forte...but just get up each day and thank God you got up and follow your usual

routine. www.flylady.com is a good site to remind oursleves you can do so much

in just 15 mins.

It will get better and you will get used to this new life..dont let it get you

down...

hugs

merry

[Guest guest]

marianne

i can't believe your husband didn't have the a/c on yesterday -- it was deadly out there

today is bad too

my a/c works all of the time, we just change the temperature setting

i like it cool for sleeping, so in the middle of the night i turn it down to 74

otherwise i keep it at 75 or 76

used to keep it higher, but with this breathing stuff, i feel better when it is cooler

plus i have ceiling fans to keep the air moving

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: OverwhelmedTo: Breathe-Support Date: Tuesday, August 11, 2009, 1:39 PM

WOW - We are so much on the same wavelength! Yesterday, driving home from work, I suddenly got so depressed- I go to a psychiatrist and am on Zoloft and it really semms to help. But I don't know why this cloud fell over me. I goofed up with filling my portable O2 and because it was so hot and humid yesterday, I stayed in for lunch. When I got home, my husband (he works from home) didn't have the AC on- that's when I really freaked out. My son came home from work and HE started screaming at him. As soon as the AC cooled the room, I felt better and having dinner with all 3 kids made me feel "normal" again. But now I'm wondering if I need to be on O2 24/7. I can't get used to the fact that I have to pay so much attention to my breathing- and that I spend the day in a what-was-that mode. Another words I took a deep breath a half hour ago and it's like the pain from the exertion just keeps resonating in my chest so I'll try not to do that again! Plus

my "lung hiccups" for lack of a better name drive me crazy. This is the worst nightmare and no one I explain this to seems to know what I'm talking about. Thank God for this group and rest assured - you are not alone- vent here anytime!nne, 55, ILD-6/09>> I think its all sinking in for me now, the disease, the> meds, the lifestyle changes, etc. etc. and it’s really starting to overwhelm me> and I’m having crying spells. > > It seems every week a new side effect pops up and I don’t> know which med is causing it. I’m on Prednisone, Azathioprine and Acetylcysteine> (NAC). Last week my blood tests

revealed> an elevated level of Neutrophils (8.07) and low levels of Lmphocytes (1.17),> just barely above the normal range (1.0). I contacted my doctor’s office and he> is on vacation until the 24th and the nurse said not to worry about it right> now. I guess I’ll just see what this> week’s tests reveal. > I’m experiencing foot, leg, hip and finger cramps. > This week food is not only tasteless, but actually has a bad taste, foods I normally love and then I just can’t eat it. > I’m involved in two big projects with daily deadlines at> work and the stress keeps me wired-up. I’ve always loved the work I do and the> pressure, but now it seems to irritate me. > It feels like people look at me different. Most of my> co-workers know about my disease and some will ask me about it and how I’m> doing and others ignore

everything about me.> Because I’ve been so focused on my disease I’ m falling> behind in domestic chores, errands, and other appointments that need to be> done.> Goals and future dreams crushed. My counselor said I need to> make new dreams. But I can’t seem to do> that yet. > I do try to focus on my blessings and am thankful for what I> do have, like my children, friends, this support group, my dog, my home, my> job, my health insurance and many more.> I guess I just needed to vent.> C_53_IPF_ 5/09> Washington-the- Evergreen- state>

[Guest guest]

Joyce, Thats funny I would freeze at 74 here in Arizona!  My a/c is set to 85 when I am gone 80 when I get home and 77 at night.  Course if I used your temps my electric bill would $400 instead of $200....but I don't have to buy fuel oil or even run my heater in the winter..got ya there

Dyane Phoenix IPF 02

 

marianne

i can't believe your husband didn't have the a/c on yesterday -- it was deadly out there

today is bad too

 

my a/c works all of the time, we just change the temperature setting

 

i like it cool for sleeping, so in the middle of the night i turn it down to 74

 

otherwise i keep it at 75 or 76

used to keep it higher, but with this breathing stuff, i feel better when it is cooler

plus i have ceiling fans to keep the air moving

Pink Joyce R (IPF 3/06)  IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: Overwhelmed

To: Breathe-Support Date: Tuesday, August 11, 2009, 1:39 PM

 

WOW - We are so much on the same wavelength! Yesterday, driving home from work, I suddenly got so depressed- I go to a psychiatrist and am on Zoloft and it really semms to help. But I don't know why this cloud fell over me. I goofed up with filling my portable O2 and because it was so hot and humid yesterday, I stayed in for lunch. When I got home, my husband (he works from home) didn't have the AC on- that's when I really freaked out. My son came home from work and HE started screaming at him. As soon as the AC cooled the room, I felt better and having dinner with all 3 kids made me feel " normal " again. But now I'm wondering if I need to be on O2 24/7. I can't get used to the fact that I have to pay so much attention to my breathing- and that I spend the day in a what-was-that mode. Another words I took a deep breath a half hour ago and it's like the pain from the exertion just keeps resonating in my chest so I'll try not to do that again! Plus

my " lung hiccups " for lack of a better name drive me crazy. This is the worst nightmare and no one I explain this to seems to know what I'm talking about. Thank God for this group and rest assured - you are not alone- vent here anytime!

nne, 55, ILD-6/09

>> I think its all sinking in for me now, the disease, the> meds, the lifestyle changes, etc. etc. and it’s really starting to overwhelm me> and I’m having crying spells. > > It seems every week a new side effect pops up and I don’t

> know which med is causing it. I’m on Prednisone, Azathioprine and Acetylcysteine> (NAC). Last week my blood tests

revealed> an elevated level of Neutrophils (8.07) and low levels of Lmphocytes (1.17),> just barely above the normal range (1.0). I contacted my doctor’s office and he> is on vacation until the 24th and the nurse said not to worry about it right

> now. I guess I’ll just see what this> week’s tests reveal. > I’m experiencing foot, leg, hip and finger cramps. > This week food is not only tasteless, but actually has a bad taste, foods I normally love and then I just can’t eat it.

> I’m involved in two big projects with daily deadlines at> work and the stress keeps me wired-up. I’ve always loved the work I do and the> pressure, but now it seems to irritate me. > It feels like people look at me different. Most of my

> co-workers know about my disease and some will ask me about it and how I’m> doing and others ignore

everything about me.> Because I’ve been so focused on my disease I’ m falling> behind in domestic chores, errands, and other appointments that need to be> done.> Goals and future dreams crushed. My counselor said I need to

> make new dreams. But I can’t seem to do> that yet. > I do try to focus on my blessings and am thankful for what I> do have, like my children, friends, this support group, my dog, my home, my

> job, my health insurance and many more.> I guess I just needed to vent.> C_53_IPF_ 5/09> Washington-the- Evergreen- state>

[Guest guest]

sure the electric bill will be high

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: Re: OverwhelmedTo: Breathe-Support Date: Tuesday, August 11, 2009, 5:13 PM

Joyce, Thats funny I would freeze at 74 here in Arizona! My a/c is set to 85 when I am gone 80 when I get home and 77 at night. Course if I used your temps my electric bill would $400 instead of $200....but I don't have to buy fuel oil or even run my heater in the winter..got ya thereDyane Phoenix IPF 02

On Tue, Aug 11, 2009 at 2:05 PM, Joyce T Rosenberg <pinkrockybeach@ yahoo.com> wrote:

marianne

i can't believe your husband didn't have the a/c on yesterday -- it was deadly out there

today is bad too

my a/c works all of the time, we just change the temperature setting

i like it cool for sleeping, so in the middle of the night i turn it down to 74

otherwise i keep it at 75 or 76

used to keep it higher, but with this breathing stuff, i feel better when it is cooler

plus i have ceiling fans to keep the air moving

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund. org

From: teddyspenguins <teddyspenguins@ yahoo.com>Subject: Re: OverwhelmedTo: Breathe-Support@ yahoogroups. comDate: Tuesday, August 11, 2009, 1:39 PM

WOW - We are so much on the same wavelength! Yesterday, driving home from work, I suddenly got so depressed- I go to a psychiatrist and am on Zoloft and it really semms to help. But I don't know why this cloud fell over me. I goofed up with filling my portable O2 and because it was so hot and humid yesterday, I stayed in for lunch. When I got home, my husband (he works from home) didn't have the AC on- that's when I really freaked out. My son came home from work and HE started screaming at him. As soon as the AC cooled the room, I felt better and having dinner with all 3 kids made me feel "normal" again. But now I'm wondering if I need to be on O2 24/7. I can't get used to the fact that I have to pay so much attention to my breathing- and that I spend the day in a what-was-that mode. Another words I took a deep breath a half hour ago and it's like the pain from the exertion just keeps resonating in my chest so I'll try not to do that again! Plus

my "lung hiccups" for lack of a better name drive me crazy. This is the worst nightmare and no one I explain this to seems to know what I'm talking about. Thank God for this group and rest assured - you are not alone- vent here anytime!nne, 55, ILD-6/09>> I think its all sinking in for me now, the disease, the> meds, the lifestyle changes, etc. etc. and it’s really starting to overwhelm me> and I’m having crying spells. > > It seems every week a new side effect pops up and I don’t> know which med is causing it. I’m on Prednisone, Azathioprine and Acetylcysteine> (NAC). Last week my blood tests revealed> an elevated level of Neutrophils

(8.07) and low levels of Lmphocytes (1.17),> just barely above the normal range (1.0). I contacted my doctor’s office and he> is on vacation until the 24th and the nurse said not to worry about it right> now. I guess I’ll just see what this> week’s tests reveal. > I’m experiencing foot, leg, hip and finger cramps. > This week food is not only tasteless, but actually has a bad taste, foods I normally love and then I just can’t eat it. > I’m involved in two big projects with daily deadlines at> work and the stress keeps me wired-up. I’ve always loved the work I do and the> pressure, but now it seems to irritate me. > It feels like people look at me different. Most of my> co-workers know about my disease and some will ask me about it and how I’m> doing and others ignore everything about me.> Because I’ve

been so focused on my disease I’ m falling> behind in domestic chores, errands, and other appointments that need to be> done.> Goals and future dreams crushed. My counselor said I need to> make new dreams. But I can’t seem to do> that yet. > I do try to focus on my blessings and am thankful for what I> do have, like my children, friends, this support group, my dog, my home, my> job, my health insurance and many more.> I guess I just needed to vent.> C_53_IPF_ 5/09> Washington-the- Evergreen- state>

[Guest guest]

Joyce/Dyane

Our air conditioner is always set at 72 degrees. Now, on 105 degree days

it won't quite keep it there with the temperature rising to about 74

degrees. I do require it exceptionally cool and have for some period of

time.

> > >

> > > I think its all sinking in for me now, the disease, the

> > > meds, the lifestyle changes, etc. etc. and it’s really

starting to

> > overwhelm me

> > > and I’m having crying spells.

> > >

> > > It seems every week a new side effect pops up and I don’t

> > > know which med is causing it. I’m on Prednisone,

Azathioprine and

> > Acetylcysteine

> > > (NAC). Last week my blood tests revealed

> > > an elevated level of Neutrophils (8.07) and low levels of

Lmphocytes

> > (1.17),

> > > just barely above the normal range (1.0). I contacted my

doctor’s

> > office and he

> > > is on vacation until the 24th and the nurse said not to worry

about it

> > right

> > > now. I guess I’ll just see what this

> > > week’s tests reveal.

> > > I’m experiencing foot, leg, hip and finger cramps.

> > > This week food is not only tasteless, but actually has a bad

taste, foods

> > I normally love and then I just can’t eat it.

> > > I’m involved in two big projects with daily deadlines at

> > > work and the stress keeps me wired-up. I’ve always loved

the work I do

> > and the

> > > pressure, but now it seems to irritate me.

> > > It feels like people look at me different. Most of my

> > > co-workers know about my disease and some will ask me about it and

how

> > I’m

> > > doing and others ignore everything about me.

> > > Because I’ve been so focused on my disease I’ m

falling

> > > behind in domestic chores, errands, and other appointments that

need to

> > be

> > > done.

> > > Goals and future dreams crushed. My counselor said I need to

> > > make new dreams. But I can’t seem to do

> > > that yet.

> > > I do try to focus on my blessings and am thankful for what I

> > > do have, like my children, friends, this support group, my dog, my

home,

> > my

> > > job, my health insurance and many more.

> > > I guess I just needed to vent.

> > > C_53_IPF_ 5/09

> > > Washington-the- Evergreen- state

> > >

> >

> >

> >

> >

>

[Guest guest]

Bruce, LOL At 72 we have a tendency to start looking for sweaters:)...not really but just goes to show how different places your body gets used to the "norms" I have had family visitors from Wisconsin sun bathing and I had to go put more clothes on. To us 60 is cold in December!Dyane Phoenix IPF 02> > > >> > > > I think its all sinking in for me now, the disease, the> > > > meds, the lifestyle changes, etc. etc. and it’s really> starting to> > > overwhelm me> > > > and I’m having crying spells.> > > >> > > > It seems every week a new side effect pops up and I don’t> > > > know which med is causing it. I’m on Prednisone,> Azathioprine and> > > Acetylcysteine> > > > (NAC). Last week my blood tests revealed> > > > an elevated level of Neutrophils (8.07) and low levels of> Lmphocytes> > > (1.17),> > > > just barely above the normal range (1.0). I contacted my> doctor’s> > > office and he> > > > is on vacation until the 24th and the nurse said not to worry> about it> > > right> > > > now. I guess I’ll just see what this> > > > week’s tests reveal.> > > > I’m experiencing foot, leg, hip and finger cramps.> > > > This week food is not only tasteless, but actually has a bad> taste, foods> > > I normally love and then I just can’t eat it.> > > > I’m involved in two big projects with daily deadlines at> > > > work and the stress keeps me wired-up. I’ve always loved> the work I do> > > and the> > > > pressure, but now it seems to irritate me.> > > > It feels like people look at me different. Most of my> > > > co-workers know about my disease and some will ask me about it and> how> > > I’m> > > > doing and others ignore everything about me.> > > > Because I’ve been so focused on my disease I’ m> falling> > > > behind in domestic chores, errands, and other appointments that> need to> > > be> > > > done.> > > > Goals and future dreams crushed. My counselor said I need to> > > > make new dreams. But I can’t seem to do> > > > that yet.> > > > I do try to focus on my blessings and am thankful for what I> > > > do have, like my children, friends, this support group, my dog, my> home,> > > my> > > > job, my health insurance and many more.> > > > I guess I just needed to vent.> > > > C_53_IPF_ 5/09> > > > Washington-the- Evergreen- state> > > >> > >> > >> > >> > >> >>

[Guest guest]

dyane

60 is perfect weather

the other problem in the east is the humidity

i remember living in El paso texas, we had water coolers or something like that (1971) to put

moisture into the air to cool it off

instead of air conditionors

herre we want to get rid of the humidity

still getting used to keyboard and hit wrong keys frequently

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: OverwhelmedTo: Breathe-Support Date: Tuesday, August 11, 2009, 5:52 PM

Bruce, LOL At 72 we have a tendency to start looking for sweaters:).. .not really but just goes to show how different places your body gets used to the "norms" I have had family visitors from Wisconsin sun bathing and I had to go put more clothes on. To us 60 is cold in December!Dyane Phoenix IPF 02> > > >> > > > I think its all sinking in for me now, the disease, the>

> > > meds, the lifestyle changes, etc. etc. and it’s really> starting to> > > overwhelm me> > > > and I’m having crying spells.> > > >> > > > It seems every week a new side effect pops up and I don’t> > > > know which med is causing it. I’m on Prednisone,> Azathioprine and> > > Acetylcysteine> > > > (NAC). Last week my blood tests revealed> > > > an elevated level of Neutrophils (8.07) and low levels of> Lmphocytes> > > (1.17),> > > > just barely above the normal range (1.0). I contacted my> doctor’s> > > office and he> > > > is on vacation until the 24th and the nurse said not to worry> about it> > > right> > > > now. I guess I’ll just see what this> >

> > week’s tests reveal.> > > > I’m experiencing foot, leg, hip and finger cramps.> > > > This week food is not only tasteless, but actually has a bad> taste, foods> > > I normally love and then I just can’t eat it.> > > > I’m involved in two big projects with daily deadlines at> > > > work and the stress keeps me wired-up. I’ve always loved> the work I do> > > and the> > > > pressure, but now it seems to irritate me.> > > > It feels like people look at me different. Most of my> > > > co-workers know about my disease and some will ask me about it and> how> > > I’m> > > > doing and others ignore everything about me.> > > > Because I’ve been so focused on my disease I’ m> falling>

> > > behind in domestic chores, errands, and other appointments that> need to> > > be> > > > done.> > > > Goals and future dreams crushed. My counselor said I need to> > > > make new dreams. But I can’t seem to do> > > > that yet.> > > > I do try to focus on my blessings and am thankful for what I> > > > do have, like my children, friends, this support group, my dog, my> home,> > > my> > > > job, my health insurance and many more.> > > > I guess I just needed to vent.> > > > C_53_IPF_ 5/09> > > > Washington-the- Evergreen- state> > > >> > >> > >> > >> > >> >>

[Guest guest]

You have that right, we don't need no stinking humidity! They are

called Swamp Coolers and many still use them in Phoenix when its dry..

much cheaper than a/c.

Dyane Phoenix IPF 02

> > > > >

> > > > > I think its all sinking in for me now, the disease, the

> > > > > meds, the lifestyle changes, etc. etc. and it’s

really

> > starting to

> > > > overwhelm me

> > > > > and I’m having crying spells.

> > > > >

> > > > > It seems every week a new side effect pops up and I

don’t

> > > > > know which med is causing it. I’m on Prednisone,

> > Azathioprine and

> > > > Acetylcysteine

> > > > > (NAC). Last week my blood tests revealed

> > > > > an elevated level of Neutrophils (8.07) and low levels of

> > Lmphocytes

> > > > (1.17),

> > > > > just barely above the normal range (1.0). I contacted my

> > doctor’s

> > > > office and he

> > > > > is on vacation until the 24th and the nurse said not to worry

> > about it

> > > > right

> > > > > now. I guess I’ll just see what this

> > > > > week’s tests reveal.

> > > > > I’m experiencing foot, leg, hip and finger cramps.

> > > > > This week food is not only tasteless, but actually has a bad

> > taste, foods

> > > > I normally love and then I just can’t eat it.

> > > > > I’m involved in two big projects with daily

deadlines at

> > > > > work and the stress keeps me wired-up. I’ve always

loved

> > the work I do

> > > > and the

> > > > > pressure, but now it seems to irritate me.

> > > > > It feels like people look at me different. Most of my

> > > > > co-workers know about my disease and some will ask me about it

and

> > how

> > > > I’m

> > > > > doing and others ignore everything about me.

> > > > > Because I’ve been so focused on my disease

I’ m

> > falling

> > > > > behind in domestic chores, errands, and other appointments

that

> > need to

> > > > be

> > > > > done.

> > > > > Goals and future dreams crushed. My counselor said I need to

> > > > > make new dreams. But I can’t seem to do

> > > > > that yet.

> > > > > I do try to focus on my blessings and am thankful for what I

> > > > > do have, like my children, friends, this support group, my

dog, my

> > home,

> > > > my

> > > > > job, my health insurance and many more.

> > > > > I guess I just needed to vent.

> > > > > C_53_IPF_ 5/09

> > > > > Washington-the- Evergreen- state

> > > > >

> > > >

> > > >

> > > >

> > > >

> > >

> >

>

[Guest guest]

Dyane

I was worse sometimes when living alone and I'd keep it so cold I had

friends who would wear sweat jackets when they'd visit. As soon as they

got there I'd turn it up so they could take off a few layers after a

while.

> > > > >

> > > > > I think its all sinking in for me now, the disease, the

> > > > > meds, the lifestyle changes, etc. etc. and it’s really

> > starting to

> > > > overwhelm me

> > > > > and I’m having crying spells.

> > > > >

> > > > > It seems every week a new side effect pops up and I

don’t

> > > > > know which med is causing it. I’m on Prednisone,

> > Azathioprine and

> > > > Acetylcysteine

> > > > > (NAC). Last week my blood tests revealed

> > > > > an elevated level of Neutrophils (8.07) and low levels of

> > Lmphocytes

> > > > (1.17),

> > > > > just barely above the normal range (1.0). I contacted my

> > doctor’s

> > > > office and he

> > > > > is on vacation until the 24th and the nurse said not to worry

> > about it

> > > > right

> > > > > now. I guess I’ll just see what this

> > > > > week’s tests reveal.

> > > > > I’m experiencing foot, leg, hip and finger cramps.

> > > > > This week food is not only tasteless, but actually has a bad

> > taste, foods

> > > > I normally love and then I just can’t eat it.

> > > > > I’m involved in two big projects with daily deadlines

at

> > > > > work and the stress keeps me wired-up. I’ve always

loved

> > the work I do

> > > > and the

> > > > > pressure, but now it seems to irritate me.

> > > > > It feels like people look at me different. Most of my

> > > > > co-workers know about my disease and some will ask me about it

> and

> > how

> > > > I’m

> > > > > doing and others ignore everything about me.

> > > > > Because I’ve been so focused on my disease I’ m

> > falling

> > > > > behind in domestic chores, errands, and other appointments

that

> > need to

> > > > be

> > > > > done.

> > > > > Goals and future dreams crushed. My counselor said I need to

> > > > > make new dreams. But I can’t seem to do

> > > > > that yet.

> > > > > I do try to focus on my blessings and am thankful for what I

> > > > > do have, like my children, friends, this support group, my

dog,

> my

> > home,

> > > > my

> > > > > job, my health insurance and many more.

> > > > > I guess I just needed to vent.

> > > > > C_53_IPF_ 5/09

> > > > > Washington-the- Evergreen- state

> > > > >

> > > >

> > > >

> > > >

> > > >

> > >

> >

>

[Guest guest]

Joyce,

and I also loved in El Paso in 1971. The technical name for the air

conditioners, as I recall, was “swamp coolers”

Bob

Dopher IPF 04/07

[Guest guest]

swamp coolers don't work in the monsoon season...like we will have one this year? !

Re: Overwhelmed

You have that right, we don't need no stinking humidity! They arecalled Swamp Coolers and many still use them in Phoenix when its dry..much cheaper than a/c.Dyane Phoenix IPF 02> > > > >> > > > > I think its all sinking in for me now, the disease, the> > > > > meds, the lifestyle changes, etc. etc. and itââ,¬â"¢sreally> > starting to> > > > overwhelm me> > > > > and Iââ,¬â"¢m having crying spells.> > > > >> > > > > It seems every week a new side effect pops up and Idonââ,¬â"¢t> > > > > know which med is causing it. Iââ,¬â"¢m on Prednisone,> > Azathioprine and> > > > Acetylcysteine> > > > > (NAC). Last week my blood tests revealed> > > > > an elevated level of Neutrophils (8.07) and low levels of> > Lmphocytes> > > > (1.17),> > > > > just barely above the normal range (1.0). I contacted my> > doctorââ,¬â"¢s> > > > office and he> > > > > is on vacation until the 24th and the nurse said not to worry> > about it> > > > right> > > > > now. I guess Iââ,¬â"¢ll just see what this> > > > > weekââ,¬â"¢s tests reveal.> > > > > Iââ,¬â"¢m experiencing foot, leg, hip and finger cramps.> > > > > This week food is not only tasteless, but actually has a bad> > taste, foods> > > > I normally love and then I just canââ,¬â"¢t eat it.> > > > > Iââ,¬â"¢m involved in two big projects with dailydeadlines at> > > > > work and the stress keeps me wired-up. Iââ,¬â"¢ve alwaysloved> > the work I do> > > > and the> > > > > pressure, but now it seems to irritate me.> > > > > It feels like people look at me different. Most of my> > > > > co-workers know about my disease and some will ask me about itand> > how> > > > Iââ,¬â"¢m> > > > > doing and others ignore everything about me.> > > > > Because Iââ,¬â"¢ve been so focused on my diseaseIââ,¬â"¢ m> > falling> > > > > behind in domestic chores, errands, and other appointmentsthat> > need to> > > > be> > > > > done.> > > > > Goals and future dreams crushed. My counselor said I need to> > > > > make new dreams. But I canââ,¬â"¢t seem to do> > > > > that yet.> > > > > I do try to focus on my blessings and am thankful for what I> > > > > do have, like my children, friends, this support group, mydog, my> > home,> > > > my> > > > > job, my health insurance and many more.> > > > > I guess I just needed to vent.> > > > > C_53_IPF_ 5/09> > > > > Washington-the- Evergreen- state> > > > >> > > >> > > >> > > >> > > >> > >> >>

[Guest guest]

Pardon me for my interpretation of your " wish " . But I don't think

meant he wished he had breast cancer or any other type of cancer.

What I think he he wished and we all most likely wish, is that we had the

medical and national support that breast cancer has. We wish our doctor's had a

definitive treatment plan. We wish for more knowledge. We wish for support and

understanding from our friends, family, community, and media. We wish the

doctors knew something and showed more compassion and support. We wish we

weren't guinea pigs! We wish for a PF project campaign with massive outreach! We

wish for a pink, yellow or some color ribbon. We wish for the financial research

support that cancer gets! We wish for a cure! With early detection, breast

cancer is 95% curable!

Most of all, I wish to be treated with the same dignity and respect as a person

with breast cancer. Lung Disease seems to carry a self-inflicted stigma. At my

initial diagnosis, while looking at the chest x-ray, my primary care doctor said

to me, while I was sitting there crying, " those are the ugliest lungs I've ever

seen. " That was it, he said you have a referral to a pulmonary specialist,

ordered a cat scan and I left in tears.

You know what? It's okay to feel outrage at times too, its what motivates us

into action!

C_53_IPF 5/09

Washington state

>

> Just now catching up on lots of emails from this group---Just wanted to

> respond to " I wish I had cancer & not this " Be careful what you wish for.

> Any terminal disease is just that---terminal.

> After losing my 44 year old husband to colon cancer on 2/12/05, I would not

> wish that on anyone. By the way----this is one of my missions----make sure

> if you are 50 or over that you have had a screening colonoscopy. AND if you

> have any symptoms---black, tarry stools; abdominal pain; tiredness; pencil

> thin stools; unexplained diarrhea or constipation; any change in bowel

> habits---then GET A COLONOSCOPY!!! Several of my friends are referring to me

> as a 'pain in the ass' because I keep hounding them about getting their

> scopes scheduled. I just tell them that I would rather be a pain in the ass

> than to have to take care of them if they get colon cancer. The kicker here

> is that my hubby HAD NO SYMPTOMS and upon diagnosis was stage IV with mets

> to liver and lungs and lasted only 20 months after diagnosis. So---if this

> scares you a bit ------ then get your scope scheduled! A polyp left in your

> body will turn to cancer within 10 years---and the only way to find polyps

> is to have a colonoscopy.

> I'll quit preaching for now--just had to say my piece.

>

> Sheila Strong

>

>

> Reply-To: Breathe-Support

> To: <Breathe-Support >

> Subject: Re: Overwhelmed

> Date: Tue, 2 May 2006 07:32:06 -0400

>

> I felt the same way for months after I was diagnosed. But just told my self

> (with the help of statements of my primary Dr. (not lung). That I was not

> going to let this control my life at least what is left of it and while I'm

> not confined to bed. I am doing what I want to do, be it a lot slower, but

> it is getting done. I also have volunteered to work on committees who are

> trying to get our little island released from Portland Me and become it's

> own town. Boy what a lot of mind and paper work that I can get buried in.

>

> What I still need to vent on is the lack of media interest in our little

> problem that is killing almost as many as breast cancer. Yet look at the

> attention they get. I guess I feel that I wish I had cancer and not this.

>

>

> Dave

>

> Overwhelmed

>

>

> I know there is no cure for this feeling butI just need to vent. I

> feel that there are so many things to do right now and I am having a

> hard time deciding what should come first. I see the surgeon tomorrow

> to discuss Open Lung biopsy, I want to schedule a consultation with

> UCLA, my doctor recommended I get my life insurance and disability in

> order, AND I need to educate myself as much as possible. All of a

> sudden every decision I make seems to carry so much weight and I want

> to stop for awhile. UGHHHH!!! Does it ever calm down or does it

> stay crazy like this?

>

>

>

>

>

>

>

[Guest guest]

thanks bob, i couldn[t remember

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: OverwhelmedTo: Breathe-Support Date: Tuesday, August 11, 2009, 8:09 PM

Joyce, and I also loved in El Paso in 1971. The technical name for the air conditioners, as I recall, was “swamp coolersâ€

Bob Dopher IPF 04/07

[Guest guest]

Don't think so, getting pretty late to start raining but ya never know...As weird as this year has been it will probably rain all October LOLDyane Phoenix IPF 02> > > > > >> > > > > > I think its all sinking in for me now, the disease, the> > > > > > meds, the lifestyle changes, etc. etc. and itââ,¬â"¢s> really> > > starting to> > > > > overwhelm me> > > > > > and Iââ,¬â"¢m having crying spells.> > > > > >> > > > > > It seems every week a new side effect pops up and I> donââ,¬â"¢t> > > > > > know which med is causing it. Iââ,¬â"¢m on Prednisone,> > > Azathioprine and> > > > > Acetylcysteine> > > > > > (NAC). Last week my blood tests revealed> > > > > > an elevated level of Neutrophils (8.07) and low levels of> > > Lmphocytes> > > > > (1.17),> > > > > > just barely above the normal range (1.0). I contacted my> > > doctorââ,¬â"¢s> > > > > office and he> > > > > > is on vacation until the 24th and the nurse said not to worry> > > about it> > > > > right> > > > > > now. I guess Iââ,¬â"¢ll just see what this> > > > > > weekââ,¬â"¢s tests reveal.> > > > > > Iââ,¬â"¢m experiencing foot, leg, hip and finger cramps.> > > > > > This week food is not only tasteless, but actually has a bad> > > taste, foods> > > > > I normally love and then I just canââ,¬â"¢t eat it.> > > > > > Iââ,¬â"¢m involved in two big projects with daily> deadlines at> > > > > > work and the stress keeps me wired-up. Iââ,¬â"¢ve always> loved> > > the work I do> > > > > and the> > > > > > pressure, but now it seems to irritate me.> > > > > > It feels like people look at me different. Most of my> > > > > > co-workers know about my disease and some will ask me about it> and> > > how> > > > > Iââ,¬â"¢m> > > > > > doing and others ignore everything about me.> > > > > > Because Iââ,¬â"¢ve been so focused on my disease> Iââ,¬â"¢ m> > > falling> > > > > > behind in domestic chores, errands, and other appointments> that> > > need to> > > > > be> > > > > > done.> > > > > > Goals and future dreams crushed. My counselor said I need to> > > > > > make new dreams. But I canââ,¬â"¢t seem to do> > > > > > that yet.> > > > > > I do try to focus on my blessings and am thankful for what I> > > > > > do have, like my children, friends, this support group, my> dog, my> > > home,> > > > > my> > > > > > job, my health insurance and many more.> > > > > > I guess I just needed to vent.> > > > > > C_53_IPF_ 5/09> > > > > > Washington-the- Evergreen- state> > > > > >> > > > >> > > > >> > > > >> > > > >> > > >> > >> >>

[Guest guest]

, I wish that I could express myself like you do. You said it all very well.Beverley Joy,71, UIP,NSIP 1-09,Diabetes,Sjogren's,Fibromyalgia IdahoSubject: Re: OverwhelmedTo: Breathe-Support Date: Tuesday, August 11, 2009, 6:28 PM

Pardon me for my interpretation of your "wish". But I don't think meant he wished he had breast cancer or any other type of cancer.

What I think he he wished and we all most likely wish, is that we had the medical and national support that breast cancer has. We wish our doctor's had a definitive treatment plan. We wish for more knowledge. We wish for support and understanding from our friends, family, community, and media. We wish the doctors knew something and showed more compassion and support. We wish we weren't guinea pigs! We wish for a PF project campaign with massive outreach! We wish for a pink, yellow or some color ribbon. We wish for the financial research support that cancer gets! We wish for a cure! With early detection, breast cancer is 95% curable!

Most of all, I wish to be treated with the same dignity and respect as a person with breast cancer. Lung Disease seems to carry a self-inflicted stigma. At my initial diagnosis, while looking at the chest x-ray, my primary care doctor said to me, while I was sitting there crying, "those are the ugliest lungs I've ever seen." That was it, he said you have a referral to a pulmonary specialist, ordered a cat scan and I left in tears.

You know what? It's okay to feel outrage at times too, its what motivates us into action!

C_53_IPF 5/09

Washington state

>

> Just now catching up on lots of emails from this group---Just wanted to

> respond to "I wish I had cancer & not this" Be careful what you wish for.

> Any terminal disease is just that---terminal.

> After losing my 44 year old husband to colon cancer on 2/12/05, I would not

> wish that on anyone. By the way----this is one of my missions---- make sure

> if you are 50 or over that you have had a screening colonoscopy. AND if you

> have any symptoms---black, tarry stools; abdominal pain; tiredness; pencil

> thin stools; unexplained diarrhea or constipation; any change in bowel

> habits---then GET A COLONOSCOPY! !! Several of my friends are referring to me

> as a 'pain in the ass' because I keep hounding them about getting their

> scopes scheduled. I just tell them that I would rather be a pain in the ass

> than to have to take care of them if they get colon cancer. The kicker here

> is that my hubby HAD NO SYMPTOMS and upon diagnosis was stage IV with mets

> to liver and lungs and lasted only 20 months after diagnosis. So---if this

> scares you a bit ------ then get your scope scheduled! A polyp left in your

> body will turn to cancer within 10 years---and the only way to find polyps

> is to have a colonoscopy.

> I'll quit preaching for now--just had to say my piece.

>

> Sheila Strong

>

> From: "DAVID ADAMS" <dladams_4@. ..>

> Reply-To: Breathe-Support@ yahoogroups. com

> To: <Breathe-Support@ yahoogroups. com>

> Subject: Re: Overwhelmed

> Date: Tue, 2 May 2006 07:32:06 -0400

>

> I felt the same way for months after I was diagnosed. But just told my self

> (with the help of statements of my primary Dr. (not lung). That I was not

> going to let this control my life at least what is left of it and while I'm

> not confined to bed. I am doing what I want to do, be it a lot slower, but

> it is getting done. I also have volunteered to work on committees who are

> trying to get our little island released from Portland Me and become it's

> own town. Boy what a lot of mind and paper work that I can get buried in.

>

> What I still need to vent on is the lack of media interest in our little

> problem that is killing almost as many as breast cancer. Yet look at the

> attention they get. I guess I feel that I wish I had cancer and not this.

>

>

> Dave

>

> Overwhelmed

>

>

> I know there is no cure for this feeling butI just need to vent. I

> feel that there are so many things to do right now and I am having a

> hard time deciding what should come first. I see the surgeon tomorrow

> to discuss Open Lung biopsy, I want to schedule a consultation with

> UCLA, my doctor recommended I get my life insurance and disability in

> order, AND I need to educate myself as much as possible. All of a

> sudden every decision I make seems to carry so much weight and I want

> to stop for awhile. UGHHHH!!! Does it ever calm down or does it

> stay crazy like this?

>

>

>

>

>

>

>

[Guest guest]

Gosh, C., you are not alone!! I am about a year ahead of you on diagnosis and I am also 53. I remember when I first started taking Prednisone (60 mgs.) last year, I was all-out crazy. I cried, I grieved, I ranted, I poured sweat, and I had hand and foot cramps. I also had palpatations so badly I thought I was going to have a heart attack. I bought a book on Prednisone, because my doctor (rheumatologist) never said word one about what all I was to expect. When I started work last fall for my 25th year, I was pasty white and swollen, people were afraid of me because I had told them too much in the spring, and my hair was very sparse on one side where it had fallen out. I wasn't coughing anymore, but was worried about everything imaginable, including flu season, snotty-nosed kids, salt intake, new curriculum, dying, managing my

diseases, etc. etc., etc.!! I was not pleasant to be around because I obsessed continually. For whatever reason, I ended up having a fairly healthy year with only three days missed for illness. I had my flu and pneumonia shots, saw my doctors regularly. In Nov. my CT scan showed improvement in my lungs, as the inflammation had stopped from the Imuran and Prednisone. By February I was tapering on the steroid, and by March I was coughing again, I had hopes of getting off the drug, but that was not to be. Recently, I found that I have progressed, with more scarring. My sats are still high and I can still work. I still face many issues daily concerning my two autoimmune diseases and this lung disease. My family is not hugely supportive and still seem to expect superwoman. In six days I will start a new school year. I am elgible to retire with full benefits mid-year, but really want to work the full year and

beyond. The higher meds have kicked in and I am not coughing. I am a fighter and I will not give up, no matter what!

I love everything you said in your letter about breast cancer. I do very much feel like an experiment as far as my healthcare from supposedly very highly educated doctors. Thank you for expressing the passion of "being heard:. You speak for all of us!

Elisa C.

Subject: Re: OverwhelmedTo: Breathe-Support Date: Tuesday, August 11, 2009, 12:39 PM

WOW - We are so much on the same wavelength! Yesterday, driving home from work, I suddenly got so depressed- I go to a psychiatrist and am on Zoloft and it really semms to help. But I don't know why this cloud fell over me. I goofed up with filling my portable O2 and because it was so hot and humid yesterday, I stayed in for lunch. When I got home, my husband (he works from home) didn't have the AC on- that's when I really freaked out. My son came home from work and HE started screaming at him. As soon as the AC cooled the room, I felt better and having dinner with all 3 kids made me feel "normal" again. But now I'm wondering if I need to be on O2 24/7. I can't get used to the fact that I have to pay so much attention to my breathing- and that I spend the day in a what-was-that mode. Another words I took a deep breath a half hour ago and it's like the pain from the exertion just keeps resonating in my chest so I'll try not to do that again! Plus

my "lung hiccups" for lack of a better name drive me crazy. This is the worst nightmare and no one I explain this to seems to know what I'm talking about. Thank God for this group and rest assured - you are not alone- vent here anytime!nne, 55, ILD-6/09>> I think its all sinking in for me now, the disease, the> meds, the lifestyle changes, etc. etc. and it’s really starting to overwhelm me> and I’m having crying spells. > > It seems every week a new side effect pops up and I don’t> know which med is causing it. I’m on Prednisone, Azathioprine and Acetylcysteine> (NAC). Last week my blood tests revealed> an elevated level of Neutrophils

(8.07) and low levels of Lmphocytes (1.17),> just barely above the normal range (1.0). I contacted my doctor’s office and he> is on vacation until the 24th and the nurse said not to worry about it right> now. I guess I’ll just see what this> week’s tests reveal. > I’m experiencing foot, leg, hip and finger cramps. > This week food is not only tasteless, but actually has a bad taste, foods I normally love and then I just can’t eat it. > I’m involved in two big projects with daily deadlines at> work and the stress keeps me wired-up. I’ve always loved the work I do and the> pressure, but now it seems to irritate me. > It feels like people look at me different. Most of my> co-workers know about my disease and some will ask me about it and how I’m> doing and others ignore everything about me.> Because I’ve

been so focused on my disease I’ m falling> behind in domestic chores, errands, and other appointments that need to be> done.> Goals and future dreams crushed. My counselor said I need to> make new dreams. But I can’t seem to do> that yet. > I do try to focus on my blessings and am thankful for what I> do have, like my children, friends, this support group, my dog, my home, my> job, my health insurance and many more.> I guess I just needed to vent.> C_53_IPF_ 5/09> Washington-the- Evergreen- state>

[Guest guest]

Hi ,Well I was diagnosed with IPF in March '09. I had been feeling SOB for awhile, at least a year. And when I think back, maybe even longer. But I always made the excuse that I was out of shape or it was too humid, etc. This last February while going for walks in FLA I became extremely SOB to the point of almost passing out and I decided that when I got home to Ohio that I was going in for a physical with a new doctor.Well the doctor suggested a stress test. During this test my pulse ox reading dropped into the mid 80's. I compensated quickly each time this would happen. My heart is fine. He had also ordered a CXR which showed fibrosis. He followed up with PFT's and HRCT. The PFT came back with poor results and the HRCT showed honeycombing. He prescribed singulair and Advair after the stress test. My doctor sent me to a local pulmodude. He did the full workup and then promptly made an appointment to see Dr. Chapman at CCF in Cleveland. He upped my Advair to 500/50 twice daily and added Flovent 220mg two puffs, twice daily. He said no biopsy at that time and to follow up in 3 months. He said people with this disease can live for decades. He also said he noted that my esophagus was open during the HRCT and he said it should have been closed. I've been dealing with GERDS for a few years and on Nexium for about three. He thought that could possibly be the cause of my IPF, or the Sjogren's. He ordered a gastric emptying test. It showed an abnormal delay in emptying. So I started Reglan 5mg twice a day. It seems to have helped. He also wanted to do an esophageal manometry test to check motility, but I asked if we could hold off on that. Imagine my surprise when he called me on my cell phone. I expected he would email me back. While updating him with my progress he was thinking out loud and mentioned that possibly I might have sarcoidosis. But, he agreed that for the time being that I could hold off on the esophageal test. I don't want another diagnosis, but to get better I quess I'd better be more accepting.So that's the story for the time being.Hope all goes well for you.PJ in OH, 54, IPF '09, Sjogren's '95 Overwhelmed

I think its all sinking in for me now, the disease, themeds, the lifestyle changes, etc. etc. and it’s really starting to overwhelm meand I’m having crying spells.

It seems every week a new side effect pops up and I don’tknow which med is causing it. I’m on Prednisone, Azathioprine and Acetylcysteine(NAC). Last week my blood tests revealedan elevated level of Neutrophils (8.07) and low levels of Lmphocytes (1.17),just barely above the normal range (1.0). I contacted my doctor’s office and heis on vacation until the 24th and the nurse said not to worry about it rightnow. I guess I’ll just see what thisweek’s tests reveal.

I’m experiencing foot, leg, hip and finger cramps.

This week food is not only tasteless, but actually has a bad taste, foods I normally love and then I just can’t eat it.

I’m involved in two big projects with daily deadlines atwork and the stress keeps me wired-up. I’ve always loved the work I do and thepressure, but now it seems to irritate me.

It feels like people look at me different. Most of myco-workers know about my disease and some will ask me about it and how I’mdoing and others ignore everything about me.

Because I’ve been so focused on my disease I’ m fallingbehind in domestic chores, errands, and other appointments that need to bedone.

Goals and future dreams crushed. My counselor said I need tomake new dreams. But I can’t seem to dothat yet.

I do try to focus on my blessings and am thankful for what Ido have, like my children, friends, this support group, my dog, my home, myjob, my health insurance and many more.

I guess I just needed to vent.

C_53_IPF_5/09Washington-the- Evergreen- state

[Guest guest]

>Hi,

I was given the gastric emptying study as part of my Tx evaluation......i have

aready been on 2 reglan a day for yearss.........and the test showed that I have

gastroparesis.....severe dalay in emptying........I empty at ne half the speed

of other people........even though I am already on the Reglan. after my TX< they

are going to deal with this because it w9il cause a problem with the balancing

of the TX drugs. I did not have any symptoms.

Kathy

> Hi ,

> Well I was diagnosed with IPF in March '09. I had been feeling SOB for awhile,

at least a year. And when I think back, maybe even longer. But I always made the

excuse that I was out of shape or it was too humid, etc.

>

> This last February while going for walks in FLA I became extremely SOB to the

point of almost passing out and I decided that when I got home to Ohio that I

was going in for a physical with a new doctor.

>

> Well the doctor suggested a stress test. During this test my pulse ox reading

dropped into the mid 80's. I compensated quickly each time this would happen. My

heart is fine. He had also ordered a CXR which showed fibrosis. He followed up

with PFT's and HRCT. The PFT came back with poor results and the HRCT showed

honeycombing. He prescribed singulair and Advair after the stress test.

>

> My doctor sent me to a local pulmodude. He did the full workup and then

promptly made an appointment to see Dr. Chapman at CCF in Cleveland. He upped my

Advair to 500/50 twice daily and added Flovent 220mg two puffs, twice daily. He

said no biopsy at that time and to follow up in 3 months. He said people with

this disease can live for decades. He also said he noted that my esophagus was

open during the HRCT and he said it should have been closed. I've been dealing

with GERDS for a few years and on Nexium for about three. He thought that could

possibly be the cause of my IPF, or the Sjogren's. He ordered a gastric emptying

test. It showed an abnormal delay in emptying. So I started Reglan 5mg twice a

day. It seems to have helped. He also wanted to do an esophageal manometry test

to check motility, but I asked if we could hold off on that. Imagine my surprise

when he called me on my cell phone. I expected he would email me back. While

updating him with my progress he was thinking out loud and mentioned that

possibly I might have sarcoidosis. But, he agreed that for the time being that I

could hold off on the esophageal test. I don't want another diagnosis, but to

get better I quess I'd better be more accepting.

>

> So that's the story for the time being.

> Hope all goes well for you.

>

> PJ in OH, 54, IPF '09, Sjogren's '95

> Overwhelmed

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>

>

>

> I think its all sinking in for me now, the disease, the

>

> meds, the lifestyle changes, etc. etc. and it’s really starting to overwhelm

me

>

> and I’m having crying spells.

>

>

>

>

>

>

>

> It seems every week a new side effect pops up and I don’t

>

> know which med is causing it. I’m on Prednisone, Azathioprine and

Acetylcysteine

>

> (NAC). Last week my blood tests revealed

>

> an elevated level of Neutrophils (8.07) and low levels of Lmphocytes (1.17),

>

> just barely above the normal range (1.0). I contacted my doctor’s office and

he

>

> is on vacation until the 24th and the nurse said not to worry about it right

>

> now. I guess I’ll just see what this

>

> week’s tests reveal.

>

>

>

>

>

>

> I’m experiencing foot, leg, hip and finger cramps.

>

>

>

>

>

>

> This week food is not only tasteless, but actually has a bad taste, foods I

normally love and then I just can’t eat it.

>

>

>

>

>

>

> I’m involved in two big projects with daily deadlines at

>

> work and the stress keeps me wired-up. I’ve always loved the work I do and

the

>

> pressure, but now it seems to irritate me.

>

>

>

>

>

>

> It feels like people look at me different. Most of my

>

> co-workers know about my disease and some will ask me about it and how I’m

>

> doing and others ignore everything about me.

>

>

>

>

>

>

> Because I’ve been so focused on my disease I’ m falling

>

> behind in domestic chores, errands, and other appointments that need to be

>

> done.

>

>

>

>

>

>

> Goals and future dreams crushed. My counselor said I need to

>

> make new dreams. But I can’t seem to do

>

> that yet.

>

>

>

>

>

>

> I do try to focus on my blessings and am thankful for what I

>

> do have, like my children, friends, this support group, my dog, my home, my

>

> job, my health insurance and many more.

>

>

>

>

>

>

> I guess I just needed to vent.

>

>

>

>

>

>

> C_53_IPF_5/09

> Washington-the- Evergreen- state

>