Re: the blues

[Guest guest]

Dear Z. Just remember You are here for a purpose. You might not know what that prupose is but somewhere there is someone that needs you. Thank God each morning as you get up that He has given you another day to praise him. Stop to see the wonders of this world even the small ones outside of your window. As long as we draw breath, we can be an inspiration to our fellow men. Remember, you are loved and needed by more people than you can even imagine.I find this time of year more depressing because I fail to see the sun shining a lot of the time. So we must make our own sunshine. I will keep you in my prayers that this too will pass and your shining light will glow for all of us. HP 6/06TNlinda zion wrote: Hello to all...I could use some advice from anyone on this great group.I have been in a total "blue funk" all day!!!!I went to maintenance rehab ( that follows Pulmonary rehab) did every thing I was supposed to do including the stuff needed to keep my knee strong ( lateral miniscus tear of right knee) and even had a 30 minute massage later in the day as a New Year treat for myself...still I have felt really down inspite of all of that positive stuff. I found myself very teary and listless most of the day and snapped at my very patient husband a lot. I have no appetite. Nothing in the meds has changed, the weather in the Philadelphia area

was nice ( 45 degrees in December is great), nothing really hurt, I wasn't having more SOB than usual. I usually can talk myself out of these down days..but not today!!! I've had the feeling of just wanting to wave the white flag and give up...but I won't do that because I need to be here for when ( not if) my daughter gets pregnant ( she's been having so much trouble with fertility issues)...I just want to see her become the Mom she is meant to be. Honestly I haven't been so down since I first was diagnosed with NSIP in July 05 2005. I have recently figured out that where I am physically today is probably the best I'm going to be and that is not great. To be o2 dependent, on enough medications to kill an elephant, not working, having little or no energy most of the time is really a miserable way to live. I had taught for the last 18 years in a community college, been active in volunteer work for literacy in our library,

did loads of needle work and spent many fulfilling hours in the pottery studio at school. I can't do most of that anymore.I cannot follow directions on needlework because of the horrid prenisone making me ADD. Talking is the most difficult thing for me to do...and I admit that I was quite a talker...so teaching is out and phone calls are short. I still get tp the studio but need a big respirater mask and the portable Helios for o2 and have difficulty with the activity needed to throw clay on the wheel and just do hand work now. Basically this is not ME!!!Finding another ME is quite difficult after 63 ( in January) years . I'm rambling, I'm sorry for that..the prednisone has caused this too. I do go for counseling and it's not getting me anywhere right now.. The psychologist wants me to write down all the things I can do...all that does is highlight what I can no longer do. I don't get the purpose of this at all. She says

that after a while I should be able to refocus on what I can do instead of what I can't. I told her that the energy needed to do this is counterproductive...I use up what positive energy I have on the negatives. I don't have enough energy to be wasting like that or this really negative email for that matter!!! So, I'm going to try to end this on a positive note...I wish everyone a Happy 2007 with Better Health for all. Z./05 __________________________________________________

[Guest guest]

,

Any one of us could have written your letter. This road is long and gets so hard to travel at times. Some days are filled with joy, because we let ourselves forget. But, reality is always there. There is no way out. The tears come when we are least expecting them. The fear always creeps back in. I try always to remember that my God is always taking care of me and to reach out to him for comfort and peace.

I appreciate so much your sharing your thoughts and feelings with us. For me, it reassures me that I am not alone. I see myself in you. As I pray for courage and strength for you, I am praying the same for myself.

Many prayers and hugs,

Joyce 1997 Pulmonary Fibrosis secondary to Lupus, Bronchiectasis 2004

Indiana >> Hello to all...I could use some advice from anyone on this great group.I > have been in a total "blue funk" all day!!!!I went to maintenance rehab > ( that follows Pulmonary rehab) did every thing I was supposed to do > including the stuff needed to keep my knee strong ( lateral miniscus > tear of right knee) and even had a 30 minute massage later in the day > as a New Year treat for myself...still I have felt really down inspite > of all of that positive stuff. I found myself very teary and listless > most of the day and snapped at my very patient husband a lot. I have no > appetite. Nothing in the meds has changed, the weather in the > Philadelphia area was nice ( 45 degrees in December is great), nothing > really hurt, I wasn't having more SOB than usual. I usually can talk > myself out of these down days..but not today!!! I've had the feeling of > just wanting to wave the white flag and give up...but I won't do that > because I need to be here for when ( not if) my daughter gets pregnant ( > she's been having so much trouble with fertility issues)...I just want > to see her become the Mom she is meant to be. Honestly I haven't been so > down since I first was diagnosed with NSIP in July 05 2005. I have > recently figured out that where I am physically today is probably the > best I'm going to be and that is not great. To be o2 dependent, on > enough medications to kill an elephant, not working, having little or no > energy most of the time is really a miserable way to live. I had taught > for the last 18 years in a community college, been active in volunteer > work for literacy in our library, did loads of needle work and spent > many fulfilling hours in the pottery studio at school. I can't do most > of that anymore.I cannot follow directions on needlework because of the > horrid prenisone making me ADD. Talking is the most difficult thing for > me to do...and I admit that I was quite a talker...so teaching is out > and phone calls are short. I still get tp the studio but need a big > respirater mask and the portable Helios for o2 and have difficulty with > the activity needed to throw clay on the wheel and just do hand work > now. Basically this is not ME!!!Finding another ME is quite difficult > after 63 ( in January) years . I'm rambling, I'm sorry for that..the > prednisone has caused this too. I do go for counseling and it's not > getting me anywhere right now.. The psychologist wants me to write down > all the things I can do...all that does is highlight what I can no > longer do. I don't get the purpose of this at all. She says that after a > while I should be able to refocus on what I can do instead of what I > can't. I told her that the energy needed to do this is > counterproductive...I use up what positive energy I have on the > negatives. I don't have enough energy to be wasting like that or this > really negative email for that matter!!! So, I'm going to try to end > this on a positive note...I wish everyone a Happy 2007 with Better > Health for all. Z./05>

[Guest guest]

Arnold,

Don't you ever take your sweet heart and leave our board. You have such a wise spirit and know just the words to say.

This is golden: I find this time of year more depressing because I fail to see the sun shining a lot of the time. So we must make our own sunshine

Hugs, Joyce PF Secondary to Lupus, Bronchiectasis 2004 Indiana

> Hello to all...I could use some advice from anyone on this great group.I > have been in a total "blue funk" all day!!!!I went to maintenance rehab > ( that follows Pulmonary rehab) did every thing I was supposed to do > including the stuff needed to keep my knee strong ( lateral miniscus > tear of right knee) and even had a 30 minute massage later in the day > as a New Year treat for myself...still I have felt really down inspite > of all of that positive stuff. I found myself very teary and listless > most of the day and snapped at my very patient husband a lot. I have no > appetite. Nothing in the meds has changed, the weather in the > Philadelphia area was nice ( 45 degrees in December is great), nothing > really hurt, I wasn't having more SOB than usual. I usually can talk > myself out of these down days..but not today!!! I've had the feeling of > just wanting to wave the white flag and give up...but I won't do that > because I need to be here for when ( not if) my daughter gets pregnant ( > she's been having so much trouble with fertility issues)...I just want > to see her become the Mom she is meant to be. Honestly I haven't been so > down since I first was diagnosed with NSIP in July 05 2005. I have > recently figured out that where I am physically today is probably the > best I'm going to be and that is not great. To be o2 dependent, on > enough medications to kill an elephant, not working, having little or no > energy most of the time is really a miserable way to live. I had taught > for the last 18 years in a community college, been active in volunteer > work for literacy in our library, did loads of needle work and spent > many fulfilling hours in the pottery studio at school. I can't do most > of that anymore.I cannot follow directions on needlework because of the > horrid prenisone making me ADD. Talking is the most difficult thing for > me to do...and I admit that I was quite a talker...so teaching is out > and phone calls are short. I still get tp the studio but need a big > respirater mask and the portable Helios for o2 and have difficulty with > the activity needed to throw clay on the wheel and just do hand work > now. Basically this is not ME!!!Finding another ME is quite difficult > after 63 ( in January) years . I'm rambling, I'm sorry for that..the > prednisone has caused this too. I do go for counseling and it's not > getting me anywhere right now.. The psychologist wants me to write down > all the things I can do...all that does is highlight what I can no > longer do. I don't get the purpose of this at all. She says that after a > while I should be able to refocus on what I can do instead of what I > can't. I told her that the energy needed to do this is > counterproductive...I use up what positive energy I have on the > negatives. I don't have enough energy to be wasting like that or this > really negative email for that matter!!! So, I'm going to try to end > this on a positive note...I wish everyone a Happy 2007 with Better > Health for all. Z./05> > > > > __________________________________________________>

[Guest guest]

Z, your post beautifully expresses the grieving you, me and so many of us go through when losing the person we once were to this disease. From no longer being able to focus on reading, to snapping at loved ones, the daily inventory of "whats changed today?" . Negotiating on what to look forward to in the future, the reasons to hang in there. Thank you for putting those feelings into words so well. I wish I had the words to share that would lessen your load. A's response has touched my heart. Your words though A, thank you for reminding us of our purpose here and how that purpose changes from day to day. That we are all couragious and can make contributions. HAve the potential - still - to light up the world.

Hugs, appreciation, love & respect to you both. lynnA

>> Hello to all...I could use some advice from anyone on this great group.I > have been in a total "blue funk" all day!!!!I went to maintenance rehab > ( that follows Pulmonary rehab) did every thing I was supposed to do > including the stuff needed to keep my knee strong ( lateral miniscus > tear of right knee) and even had a 30 minute massage later in the day > as a New Year treat for myself...still I have felt really down inspite > of all of that positive stuff. I found myself very teary and listless > most of the day and snapped at my very patient husband a lot. I have no > appetite. Nothing in the meds has changed, the weather in the > Philadelphia area was nice ( 45 degrees in December is great), nothing > really hurt, I wasn't having more SOB than usual. I usually can talk > myself out of these down days..but not today!!! I've had the feeling of > just wanting to wave the white flag and give up...but I won't do that > because I need to be here for when ( not if) my daughter gets pregnant ( > she's been having so much trouble with fertility issues)...I just want > to see her become the Mom she is meant to be. Honestly I haven't been so > down since I first was diagnosed with NSIP in July 05 2005. I have > recently figured out that where I am physically today is probably the > best I'm going to be and that is not great. To be o2 dependent, on > enough medications to kill an elephant, not working, having little or no > energy most of the time is really a miserable way to live. I had taught > for the last 18 years in a community college, been active in volunteer > work for literacy in our library, did loads of needle work and spent > many fulfilling hours in the pottery studio at school. I can't do most > of that anymore.I cannot follow directions on needlework because of the > horrid prenisone making me ADD. Talking is the most difficult thing for > me to do...and I admit that I was quite a talker...so teaching is out > and phone calls are short. I still get tp the studio but need a big > respirater mask and the portable Helios for o2 and have difficulty with > the activity needed to throw clay on the wheel and just do hand work > now. Basically this is not ME!!!Finding another ME is quite difficult > after 63 ( in January) years . I'm rambling, I'm sorry for that..the > prednisone has caused this too. I do go for counseling and it's not > getting me anywhere right now.. The psychologist wants me to write down > all the things I can do...all that does is highlight what I can no > longer do. I don't get the purpose of this at all. She says that after a > while I should be able to refocus on what I can do instead of what I > can't. I told her that the energy needed to do this is > counterproductive...I use up what positive energy I have on the > negatives. I don't have enough energy to be wasting like that or this > really negative email for that matter!!! So, I'm going to try to end > this on a positive note...I wish everyone a Happy 2007 with Better > Health for all. Z./05>

[Guest guest]

Dear :

It is normal to feel the way you do and the fact that it is only "at times" you feel that way is a miracle in itself. How can anyone be given a "death sentence" and not feel down? Of course the Prednisone adds greatly to the mood changes as well. Are you on an anti-depressant? If not, maybe you should be and if you are maybe it should be adjusted upwards while you are on the Prednisone. I know my husband has the view to not dwell on the negative until you have to face it, well that is easy to say if you are not the one facing the declining ability to do things.

I just got out of the hospital after having knee surgery and some have asked why I bothered to have it done when I am terminal? Well, I don't know how much time I have but I want to go forward as if I have 20 years or more, for who knows, maybe I will have that much time. I want to get myself in as good of condition so that I can enjoy what time I have. Setting this as a goal has really helped my mood to change for the better as before I was just planning on dying, in that everything I did, focused on the end of my life instead of living my life. Not an uplifting way to live, hey? Perhaps if you set some goals to work for, even if they seem that you wont be able to reach them, then your mood will improve as well. No one, not even doctors can predict accurately how much time each of us has, so though it is always a good idea to get our affairs in order(even if not terminally ill), we need to plan our lives as though we will live as long as anyone else our age will. Wouldn't it be awful to plan only as if we were going to die within the next two years and then 10 years or more passes and we wasted all that time, waiting to die? I, for one, want to go out, dancing and laughing for joy at all the things I accomplished. But I also know I need help and that is why I take an antidepressant and supplements for mood elevation as well. Whatever it takes, that I will do.

Carolyn

Carolyn Merritt

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

"One more day of life to praise Jehovah"

To learn what God's promise for the future is, go to:

www.watchtower.org

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Member of the Pulmonary Fibrosis Coalition

Diagnosed by Biopsy 9/18/06 with

Desquamative Interstitial Pneumonitis

(Terminal Lung Disease)

Please consider organ donation!

www.organdonor.gov

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

-- the blues

Hello to all...I could use some advice from anyone on this great group.I

have been in a total "blue funk" all day!!!!I went to maintenance rehab

( that follows Pulmonary rehab) did every thing I was supposed to do

including the stuff needed to keep my knee strong ( lateral miniscus

tear of right knee) and even had a 30 minute massage later in the day

as a New Year treat for myself...still I have felt really down inspite

of all of that positive stuff. I found myself very teary and listless

most of the day and snapped at my very patient husband a lot. I have no

appetite. Nothing in the meds has changed, the weather in the

Philadelphia area was nice ( 45 degrees in December is great), nothing

really hurt, I wasn't having more SOB than usual. I usually can talk

myself out of these down days..but not today!!! I've had the feeling of

just wanting to wave the white flag and give up...but I won't do that

because I need to be here for when ( not if) my daughter gets pregnant (

she's been having so much trouble with fertility issues)...I just want

to see her become the Mom she is meant to be. Honestly I haven't been so

down since I first was diagnosed with NSIP in July 05 2005. I have

recently figured out that where I am physically today is probably the

best I'm going to be and that is not great. To be o2 dependent, on

enough medications to kill an elephant, not working, having little or no

energy most of the time is really a miserable way to live. I had taught

for the last 18 years in a community college, been active in volunteer

work for literacy in our library, did loads of needle work and spent

many fulfilling hours in the pottery studio at school. I can't do most

of that anymore.I cannot follow directions on needlework because of the

horrid prenisone making me ADD. Talking is the most difficult thing for

me to do...and I admit that I was quite a talker...so teaching is out

and phone calls are short. I still get tp the studio but need a big

respirater mask and the portable Helios for o2 and have difficulty with

the activity needed to throw clay on the wheel and just do hand work

now. Basically this is not ME!!!Finding another ME is quite difficult

after 63 ( in January) years . I'm rambling, I'm sorry for that..the

prednisone has caused this too. I do go for counseling and it's not

getting me anywhere right now.. The psychologist wants me to write down

all the things I can do...all that does is highlight what I can no

longer do. I don't get the purpose of this at all. She says that after a

while I should be able to refocus on what I can do instead of what I

can't. I told her that the energy needed to do this is

counterproductive...I use up what positive energy I have on the

negatives. I don't have enough energy to be wasting like that or this

really negative email for that matter!!! So, I'm going to try to end

this on a positive note...I wish everyone a Happy 2007 with Better

Health for all. Z./05

[Guest guest]

Hi LInda,

Your letter sounds like it could of been written by me. Sometimes when I'm at the store and I see people walking around, pushing carts and there I stand,holding my o2, waiting while my sweet husband rounds up a ridey cart for me, I think, do those people know how lucky they are? Just to be able to walk and not have to carry o2? I walked around our truck the other day without it on and I said to my hubby, " look, no hoses, nothing, this feels great" . Of course I had to put it right back on. I too get down cause I can't do like I used to, in fact, I spent all day today in bed , sleeping, just worn out. But I still remember that God has everything in control, He has a plan and a purpose for my and everyones life. When I wake up I say Thank You Lord for another day. We are more thankful for things others overlook, the air to breathe, etc. I'm a little down myself, but dear sweet Carolyn reminded me not to give up yet, to make plans, things to look forward to, so I am. My 31st wedding anniversary is Feb 17th, I told my husband,let's do something, go out to dinner, go for a ride anything!!. Hang in there, you are never alone.

LOve in Christ,

Vicky81856

[Guest guest]

Hi

I too am having a bad day today. It must be something iwth the weather

in the east.

pink joyce

>

> Hello to all...I could use some advice from anyone on this great

group.I

> have been in a total " blue funk " all day!!!!I went to maintenance

rehab

> ( that follows Pulmonary rehab) did every thing I was supposed to do

> including the stuff needed to keep my knee strong ( lateral miniscus

> tear of right knee) and even had a 30 minute massage later in the day

> as a New Year treat for myself...still I have felt really down inspite

> of all of that positive stuff. I found myself very teary and listless

> most of the day and snapped at my very patient husband a lot. I have

no

> appetite. Nothing in the meds has changed, the weather in the

> Philadelphia area was nice ( 45 degrees in December is great), nothing

> really hurt, I wasn't having more SOB than usual. I usually can talk

> myself out of these down days..but not today!!! I've had the feeling

of

> just wanting to wave the white flag and give up...but I won't do that

> because I need to be here for when ( not if) my daughter gets pregnant

(

> she's been having so much trouble with fertility issues)...I just want

> to see her become the Mom she is meant to be. Honestly I haven't been

so

> down since I first was diagnosed with NSIP in July 05 2005. I have

> recently figured out that where I am physically today is probably the

> best I'm going to be and that is not great. To be o2 dependent, on

> enough medications to kill an elephant, not working, having little or

no

> energy most of the time is really a miserable way to live. I had

taught

> for the last 18 years in a community college, been active in volunteer

> work for literacy in our library, did loads of needle work and spent

> many fulfilling hours in the pottery studio at school. I can't do most

> of that anymore.I cannot follow directions on needlework because of

the

> horrid prenisone making me ADD. Talking is the most difficult thing

for

> me to do...and I admit that I was quite a talker...so teaching is out

> and phone calls are short. I still get tp the studio but need a big

> respirater mask and the portable Helios for o2 and have difficulty

with

> the activity needed to throw clay on the wheel and just do hand work

> now. Basically this is not ME!!!Finding another ME is quite difficult

> after 63 ( in January) years . I'm rambling, I'm sorry for that..the

> prednisone has caused this too. I do go for counseling and it's not

> getting me anywhere right now.. The psychologist wants me to write

down

> all the things I can do...all that does is highlight what I can no

> longer do. I don't get the purpose of this at all. She says that after

a

> while I should be able to refocus on what I can do instead of what I

> can't. I told her that the energy needed to do this is

> counterproductive...I use up what positive energy I have on the

> negatives. I don't have enough energy to be wasting like that or this

> really negative email for that matter!!! So, I'm going to try to end

> this on a positive note...I wish everyone a Happy 2007 with Better

> Health for all. Z./05

>

[Guest guest]

This is for all of my new wonderful friends...Thank you all for your

kind words of encouragement, your prayers and your total understanding.

it's so great to be able to spill my feelings without having to explain

all my trouble and anxiety and lack of drive and " my not getting any

better " to any of you. I am doing better today...not so blue and down. I

frequently find myself having to answer the question " How are you

today... are you feeling any better today? " . I keep telling people(

especially my Mom ( who at 87 is far healthier than me) and other caring

family members that I will not be getting much better...that all the

doctors really can hope for is for my condition not to get worse. They

just don't get it. Neither do I at times. Again, Thanks for your

kindness..Happy and Hopefully Healthier New Year to everyone. Z./05

Joyce wrote:

>

> Hi

>

> I too am having a bad day today. It must be something iwth the weather

> in the east.

>

> pink joyce

>

>

> >

> > Hello to all...I could use some advice from anyone on this great

> group.I

> > have been in a total " blue funk " all day!!!!I went to maintenance

> rehab

> > ( that follows Pulmonary rehab) did every thing I was supposed to do

> > including the stuff needed to keep my knee strong ( lateral miniscus

> > tear of right knee) and even had a 30 minute massage later in the day

> > as a New Year treat for myself...still I have felt really down inspite

> > of all of that positive stuff. I found myself very teary and listless

> > most of the day and snapped at my very patient husband a lot. I have

> no

> > appetite. Nothing in the meds has changed, the weather in the

> > Philadelphia area was nice ( 45 degrees in December is great), nothing

> > really hurt, I wasn't having more SOB than usual. I usually can talk

> > myself out of these down days..but not today!!! I've had the feeling

> of

> > just wanting to wave the white flag and give up...but I won't do that

> > because I need to be here for when ( not if) my daughter gets pregnant

> (

> > she's been having so much trouble with fertility issues)...I just want

> > to see her become the Mom she is meant to be. Honestly I haven't been

> so

> > down since I first was diagnosed with NSIP in July 05 2005. I have

> > recently figured out that where I am physically today is probably the

> > best I'm going to be and that is not great. To be o2 dependent, on

> > enough medications to kill an elephant, not working, having little or

> no

> > energy most of the time is really a miserable way to live. I had

> taught

> > for the last 18 years in a community college, been active in volunteer

> > work for literacy in our library, did loads of needle work and spent

> > many fulfilling hours in the pottery studio at school. I can't do most

> > of that anymore.I cannot follow directions on needlework because of

> the

> > horrid prenisone making me ADD. Talking is the most difficult thing

> for

> > me to do...and I admit that I was quite a talker...so teaching is out

> > and phone calls are short. I still get tp the studio but need a big

> > respirater mask and the portable Helios for o2 and have difficulty

> with

> > the activity needed to throw clay on the wheel and just do hand work

> > now. Basically this is not ME!!!Finding another ME is quite difficult

> > after 63 ( in January) years . I'm rambling, I'm sorry for that..the

> > prednisone has caused this too. I do go for counseling and it's not

> > getting me anywhere right now.. The psychologist wants me to write

> down

> > all the things I can do...all that does is highlight what I can no

> > longer do. I don't get the purpose of this at all. She says that after

> a

> > while I should be able to refocus on what I can do instead of what I

> > can't. I told her that the energy needed to do this is

> > counterproductive...I use up what positive energy I have on the

> > negatives. I don't have enough energy to be wasting like that or this

> > really negative email for that matter!!! So, I'm going to try to end

> > this on a positive note...I wish everyone a Happy 2007 with Better

> > Health for all. Z./05

> >

>

>

>

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