Re: Got behind in my reading and Prednisone/azithoprin

[Guest guest]

Pat

there is no expiration date stamped on your behind!!! as Peggy would say

yes we are all scared in the beginning

we come here and we learn that there are people who have outlived the predictions

one lady was dx 8 years ago, on o2, and still working full time

another lady was dx 13 years ago, last year she traveled to the united states for several months

sorry you need us but glad you found us

welcome

by the way, are you going to a hospital that has a department that specializes in interstitial lung diseases, we highly recommend it, even if it is just for one consult

also, do you have an oximeter? the thing they put on your finger to measure your oxygen saturation and pulse, if not, order one as soon as possible

someone else will give you a link to purchase one or

you could do a search for Nonin and order one from them

i bought the nonin 9500 before i knew about this group, this fall i bought the $99 nonin Go

there is a cheaper one, but i don't know the link

i am on cellcept, 10 mgs prednisone and mepron, tried to get down to 7 mgs, but got broncitis and had to go up again

i wonder why they are keeping you on such a high dose of prednisone

it's none of my business, but have you asked them about weaning the prednisone down to a lower dose

it will take several months to wean down the dose

if you haven't gone for pulmonary rehab yet, ask your doc about it

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

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Got behind in my reading and Prednisone/azithoprinTo: Breathe-Support Date: Monday, January 11, 2010, 1:10 PM

Joined the group and said hello. Then I disappeared for three weeks. I somehow managed to get pneumonia just before Christmas. This is the first time I've got sick since my diagnosis last February and I never want to get sick like that again. I seriously thought I was going to die and scared me and my family to death.I wish I had some answers to the question "why". Maybe the better question is "why me?". I haven't had one of those nice lives and have managed to maintain some sort of sanity but this pulmonary fibrosis is just too much. Being told a couple of days aftr my 55 birthday that I would be doing good if I lived 5 years was really not what I expected to ever hear. And because I've been so sick, it really is my husband and family that have been going through hell since my diagnosis. I'm finally feeling well enough to be like my old self for a couple of hours a day and I love it.I've been on some type of cortecosteroid since

last Feb when I was first sick. Right now I'm on 60 mg of Prednison daily and I really don't like it - or what it does to my body. But it's supposed to help so I'm going to keep taking it. I'm also on azothiaprine - 150 mg daily. This is so that my body stops fighting my lungs. Maybe that way the disease process can be slowed down - giving me a bettr length of life. At least that is what I think it's supposed to do. I'm also on an untifungal called Mepron so that I don't end up with fungal infections in my lungs.Life has changed so much and I'm totally resentful of that. Here it is Jan. 11 and I've had two Christmases. I have four more to go, if I every have the oomph to actually wrap. I can't do big groups so social occasions are kept to small groups of 3 or 4 people. Otherwise I might as well just curl up on the floor and go to sleep.I'll try to read more consistently and write more but way shorter posts. I can't wait to get to know

some of you. BTW, I live in Edmonton, Alberta Canada, just in case there are other Canucks here.Pat

[Guest guest]

Hi Pat, My name is Peggy and I have been here on the board almost from the beginning. I so felt your fear when I read your post. I was there too. We all "Welcome" youwith open hearts and all the information and help about this monster of a disease we share. There isn't anyway to make this easier except to have a little talk with yourself and decide how you want to live the years you have left. We have all had to come to the place of acceptance, (kickin and screamin non the less) From the very beginning I was able to turn this over to the Lord to deal with.. my job is to LIVE every moment I can, make good memories for my family and tell them how much they are loved. My Faith has been my strength. I am so sorry you had to get sick and wind up in the Big House (hospital) Make plans to do something fun.. I know it doesn't seem like you can enjoy yourself but trust me you can. Look forward to LIVING not dyeing. I have been through so many twists and turns but have done every thing in MY POWER to stay as positive as possible. Your attitude is a BIGGG part of living with this disease. The Dr.s don't know how long you have. God is in control. We are all here for you just ask anything you want, there are no dumb question.Love & PrayersPeggy, IPF 2004

[Guest guest]

Pat

I feel more bad for how you feel about the disease and yourself than I

do about you having the disease itself. I'll try to explain. I know its

the norm when someone comes in overwhelmed by the disease for us to run

and say we understand and how sorry we are. Well, the " why me " I can

only answer seriously with " why not you? " Why any of us get any diseases

and conditions. Do we wish them on someone else instead? Why not

something far worse than PF as there are many? Resentfulness and anger

may be good for the initial point of being told but after a while we

need to find a way beyond them. To me that is often counseling which

helps us find acceptance. Is your husband and family suffering simply

because you're sick or because you're so angry and resentful?

Ultimately the disease is what it is. We can question why and be angry

and spend all our energy on those emotions or we can learn to make the

most of life with it we can. You've had two Christmases. Why you? Some

get none. You're talking of more so cherish each day as if it is a

Christmas. You may not live ten years or five years or three years. But,

do you plan on living tomorrow. I don't mean surviving it, I mean

savoring it.

I am writing this way only in the hope that you'll get help or seek

whatever means you can to take advantage of each day of the rest of your

life. See, I can't wish the disease away from you and onto someone else.

I wish I didn't have the disease but I am so thankful of many others I

don't have. I consider the two years since diagnosis a gift rather than

focusing on the years that may never come. I just got home from my

counselor who has saved me from far worse than the PF and who has given

me the mindset to live though PF. I strongly encourage you to find a

counselor to help you in the same way. Carrying around such bitterness

and resentfulness is a far worse pain than any the disease will ever

inflict upon you directly. I know, I've been there long before the

disease. I don't wish for myself that I be given a certain number of

years or more than someone else or that I be the one person miraculously

cured. What I do wish is that I maintain the strength to make the most

of each day I'm given, in whatever condition they are presented to me.

>

> Joined the group and said hello. Then I disappeared for three weeks.

I somehow managed to get pneumonia just before Christmas. This is the

first time I've got sick since my diagnosis last February and I never

want to get sick like that again. I seriously thought I was going to

die and scared me and my family to death.

>

> I wish I had some answers to the question " why " . Maybe the better

question is " why me? " . I haven't had one of those nice lives and have

managed to maintain some sort of sanity but this pulmonary fibrosis is

just too much. Being told a couple of days aftr my 55 birthday that I

would be doing good if I lived 5 years was really not what I expected to

ever hear. And because I've been so sick, it really is my husband and

family that have been going through hell since my diagnosis. I'm

finally feeling well enough to be like my old self for a couple of hours

a day and I love it.

>

> I've been on some type of cortecosteroid since last Feb when I was

first sick. Right now I'm on 60 mg of Prednison daily and I really

don't like it - or what it does to my body. But it's supposed to help

so I'm going to keep taking it. I'm also on azothiaprine - 150 mg

daily. This is so that my body stops fighting my lungs. Maybe that way

the disease process can be slowed down - giving me a bettr length of

life. At least that is what I think it's supposed to do. I'm also on

an untifungal called Mepron so that I don't end up with fungal

infections in my lungs.

>

> Life has changed so much and I'm totally resentful of that. Here it

is Jan. 11 and I've had two Christmases. I have four more to go, if I

every have the oomph to actually wrap. I can't do big groups so social

occasions are kept to small groups of 3 or 4 people. Otherwise I might

as well just curl up on the floor and go to sleep.

>

> I'll try to read more consistently and write more but way shorter

posts. I can't wait to get to know some of you. BTW, I live in

Edmonton, Alberta Canada, just in case there are other Canucks here.

>

> Pat

>

[Guest guest]

Hi Pat,

Welcome to the group. Sorry you were sick with pneumonia. Hope you are feeling much better now.

I too went through some depression and self-pity at hearing my diagnosis and still go through moments from time-to-time. But I didn't spend a lot of time on the "why me" I just got busy and and started making new plans and goals. I was had feelings of being cheated out of the plans I thought would be doing in the second-half of life, but now that I've come to terms with it, I'm kind of looking forwarding to my new goals and plans. And my list of things to do keeps gettin bigger and bigger. I am still capable of doing a lot of things!

When I hear about some of the terrible crippling diseases out there that others suffer from...I say, wow, I'm glad I have this and not that.

Like many will tell you in this group the prognosis of 3-5 years is not set in stone. But if it really were true that that's all the time you had, wouldn't you want to get busy livin it the way you really want too!!

I count my blessings and this wonderful support group of people is at the top of that list!

C_53_Familial IPF_5/09, Washington

HOPE doesn't disappoint!

To: Breathe-Support Sent: Mon, January 11, 2010 10:10:52 AMSubject: Got behind in my reading and Prednisone/azithoprin

Joined the group and said hello. Then I disappeared for three weeks. I somehow managed to get pneumonia just before Christmas. This is the first time I've got sick since my diagnosis last February and I never want to get sick like that again. I seriously thought I was going to die and scared me and my family to death.I wish I had some answers to the question "why". Maybe the better question is "why me?". I haven't had one of those nice lives and have managed to maintain some sort of sanity but this pulmonary fibrosis is just too much. Being told a couple of days aftr my 55 birthday that I would be doing good if I lived 5 years was really not what I expected to ever hear. And because I've been so sick, it really is my husband and family that have been going through hell since my diagnosis. I'm finally feeling well enough to be like my old self for a couple of hours a day and I love it.I've been on some type of cortecosteroid since last

Feb when I was first sick. Right now I'm on 60 mg of Prednison daily and I really don't like it - or what it does to my body. But it's supposed to help so I'm going to keep taking it. I'm also on azothiaprine - 150 mg daily. This is so that my body stops fighting my lungs. Maybe that way the disease process can be slowed down - giving me a bettr length of life. At least that is what I think it's supposed to do. I'm also on an untifungal called Mepron so that I don't end up with fungal infections in my lungs.Life has changed so much and I'm totally resentful of that. Here it is Jan. 11 and I've had two Christmases. I have four more to go, if I every have the oomph to actually wrap. I can't do big groups so social occasions are kept to small groups of 3 or 4 people. Otherwise I might as well just curl up on the floor and go to sleep.I'll try to read more consistently and write more but way shorter posts. I can't wait to get to know some of

you. BTW, I live in Edmonton, Alberta Canada, just in case there are other Canucks here.Pat

[Guest guest]

Another suggestion is when you get your oximeter take it with you to your dr's app't or if you are in the hospital and check it against their's. For me it made me feel good knowing the numbers agreed.To: Breathe-Support Sent: Mon, January 11, 2010 1:57:12

PMSubject: Re: Got behind in my reading and Prednisone/azithoprin Pat there is no expiration date stamped on your behind!!! as Peggy would say yes we are all scared in the beginning we come here and we learn that there are people who have outlived the predictions

one lady was dx 8 years ago, on o2, and still working full time another lady was dx 13 years ago, last year she traveled to the united states for several months sorry you need us but glad you found us welcome by the way, are you going to a hospital that has a department that specializes in interstitial lung diseases, we highly recommend it, even if it is just for one consult also, do you have an oximeter? the thing they put on your finger to measure your oxygen saturation and pulse, if not, order one as soon as possible someone else will give you a link to purchase one or you could do a search for Nonin and order one from them i bought the nonin 9500 before i knew about this group, this fall i

bought the $99 nonin Go there is a cheaper one, but i don't know the link i am on cellcept, 10 mgs prednisone and mepron, tried to get down to 7 mgs, but got broncitis and had to go up again i wonder why they are keeping you on such a high dose of prednisone it's none of my business, but have you asked them about weaning the prednisone down to a lower dose it will take several months to wean down the dose if you haven't gone for pulmonary rehab yet, ask your doc about it Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09 www.transplantfund. org From: maslows <maslows (AT) shaw (DOT) ca>Subject: Got behind in my reading and Prednisone/azithopr inTo: Breathe-Support@ yahoogroups. comDate: Monday, January 11, 2010, 1:10 PM Joined the group and said hello. Then I disappeared for three weeks. I somehow managed to get pneumonia just before

Christmas. This is the first time I've got sick since my diagnosis last February and I never want to get sick like that again. I seriously thought I was going to die and scared me and my family to death.I wish I had some answers to the question "why". Maybe the better question is "why me?". I haven't had one of those nice lives and have managed to maintain some sort of sanity but this pulmonary fibrosis is just too much. Being told a couple of days aftr my 55 birthday that I would be doing good if I lived 5 years was really not what I expected to ever hear. And because I've been so sick, it really is my husband and family that have been going through hell since my diagnosis. I'm finally feeling well enough to be like my old self for a couple of hours a day and I love it.I've been on some type of cortecosteroid since last Feb when I was first sick. Right now I'm on 60 mg of Prednison daily and I really don't like it - or what it does to

my body. But it's supposed to help so I'm going to keep taking it. I'm also on azothiaprine - 150 mg daily. This is so that my body stops fighting my lungs. Maybe that way the disease process can be slowed down - giving me a bettr length of life. At least that is what I think it's supposed to do. I'm also on an untifungal called Mepron so that I don't end up with fungal infections in my lungs.Life has changed so much and I'm totally resentful of that. Here it is Jan. 11 and I've had two Christmases. I have four more to go, if I every have the oomph to actually wrap. I can't do big groups so social occasions are kept to small groups of 3 or 4 people. Otherwise I might as well just curl up on the floor and go to sleep.I'll try to read more consistently and write more but way shorter posts. I can't wait to get to know some of you. BTW, I live in Edmonton, Alberta Canada, just in case there are other Canucks

here.Pat

[Guest guest]

I saw my cardiologist yesterday. The oximeter they used was just like mine. The $65 one that a lot of us use.Beverley Joy,71,PF, Chronic HP, birds and mold 1-09,Diabetes,Sjogren's,Fibromyalgia Idaho From: maslows <maslows (AT) shaw (DOT) ca>Subject: Got behind in my reading and Prednisone/azithopr inTo: Breathe-Support@ yahoogroups. comDate: Monday, January 11, 2010, 1:10 PM Joined the group and said hello. Then I disappeared for three weeks. I somehow managed to get pneumonia just before

Christmas. This is the first time I've got sick since my diagnosis last February and I never want to get sick like that again. I seriously thought I was going to die and scared me and my family to death.I wish I had some answers to the question "why". Maybe the better question is "why me?". I haven't had one of those nice lives and have managed to maintain some sort of sanity but this pulmonary fibrosis is just too much. Being told a couple of days aftr my 55 birthday that I would be doing good if I lived 5 years was really not what I expected to ever hear. And because I've been so sick, it really is my husband and family that have been going through hell since my diagnosis. I'm finally feeling well enough to be like my old self for a couple of hours a day and I love it.I've been on some type of cortecosteroid since last Feb when I was first sick. Right now I'm on 60 mg of Prednison daily and I really don't like it - or what it does to

my body. But it's supposed to help so I'm going to keep taking it. I'm also on azothiaprine - 150 mg daily. This is so that my body stops fighting my lungs. Maybe that way the disease process can be slowed down - giving me a bettr length of life. At least that is what I think it's supposed to do. I'm also on an untifungal called Mepron so that I don't end up with fungal infections in my lungs.Life has changed so much and I'm totally resentful of that. Here it is Jan. 11 and I've had two Christmases. I have four more to go, if I every have the oomph to actually wrap. I can't do big groups so social occasions are kept to small groups of 3 or 4 people. Otherwise I might as well just curl up on the floor and go to sleep.I'll try to read more consistently and write more but way shorter posts. I can't wait to get to know some of you. BTW, I live in Edmonton, Alberta Canada, just in case there are other Canucks

here.Pat

[Guest guest]

BJ... is everything 'ok' with your cardioperson?

MamaSher; IPF 2006; Cellular NSIP, PH, 2009, OR,.Don't fret about tomorrow, God is already there!

From: Beverley Joy

Sent: Tuesday, January 12, 2010 9:38 AM

To: Breathe-Support

Subject: Re: Got behind in my reading and Prednisone/azithoprin

I saw my cardiologist yesterday. The oximeter they used was just like mine. The $65 one that a lot of us use.Beverley Joy,71,PF, Chronic HP, birds and mold 1-09,Diabetes,Sjogren's,Fibromyalgia Idaho

From: maslows <maslows (AT) shaw (DOT) ca>Subject: Got behind in my reading and Prednisone/azithopr inTo: Breathe-Support@ yahoogroups. comDate: Monday, January 11, 2010, 1:10 PM

Joined the group and said hello. Then I disappeared for three weeks. I somehow managed to get pneumonia just before Christmas. This is the first time I've got sick since my diagnosis last February and I never want to get sick like that again. I seriously thought I was going to die and scared me and my family to death.I wish I had some answers to the question "why". Maybe the better question is "why me?". I haven't had one of those nice lives and have managed to maintain some sort of sanity but this pulmonary fibrosis is just too much. Being told a couple of days aftr my 55 birthday that I would be doing good if I lived 5 years was really not what I expected to ever hear. And because I've been so sick, it really is my husband and family that have been going through hell since my diagnosis. I'm finally feeling well enough to be like my old self for a couple of hours a day and I love it.I've been on some type of cortecosteroid since last Feb when I was first sick. Right now I'm on 60 mg of Prednison daily and I really don't like it - or what it does to my body. But it's supposed to help so I'm going to keep taking it. I'm also on azothiaprine - 150 mg daily. This is so that my body stops fighting my lungs. Maybe that way the disease process can be slowed down - giving me a bettr length of life. At least that is what I think it's supposed to do. I'm also on an untifungal called Mepron so that I don't end up with fungal infections in my lungs.Life has changed so much and I'm totally resentful of that. Here it is Jan. 11 and I've had two Christmases. I have four more to go, if I every have the oomph to actually wrap. I can't do big groups so social occasions are kept to small groups of 3 or 4 people. Otherwise I might as well just curl up on the floor and go to sleep.I'll try to read more consistently and write more but way shorter posts. I can't wait to get to know some of you. BTW, I live in Edmonton, Alberta Canada, just in case there are other Canucks here.Pat

No virus found in this incoming message.Checked by AVG - www.avg.com Version: 9.0.725 / Virus Database: 270.14.137/2617 - Release Date: 01/12/10 11:35:00

[Guest guest]

Yes. My cardiologist just needs to see me once a year at this point. My Echo was good.Beverley Joy,71,PF, Chronic HP, birds and mold 1-09,Sjogren's,Fibromyalgia Idaho

From: maslows <maslows (AT) shaw (DOT) ca>Subject: Got behind in my reading and Prednisone/azithopr inTo: Breathe-Support@ yahoogroups. comDate: Monday, January 11, 2010, 1:10 PM

Joined the group and said hello. Then I disappeared for three weeks. I somehow managed to get pneumonia just before Christmas. This is the first time I've got sick since my diagnosis last February and I never want to get sick like that again. I seriously thought I was going to die and scared me and my family to death.I wish I had some answers to the question "why". Maybe the better question is "why me?". I haven't had one of those nice lives and have managed to maintain some sort of sanity but this pulmonary fibrosis is just too much. Being told a couple of days aftr my 55 birthday that I would be doing good if I lived 5 years was really not what I expected to ever hear. And because I've been so sick, it really is my husband and family that have been going through hell since my diagnosis. I'm finally feeling well enough to be like my old self for a couple of hours a day and I love it.I've been on some type of cortecosteroid since last Feb when I was first sick. Right now I'm on 60 mg of Prednison daily and I really don't like it - or what it does to my body. But it's supposed to help so I'm going to keep taking it. I'm also on azothiaprine - 150 mg daily. This is so that my body stops fighting my lungs. Maybe that way the disease process can be slowed down - giving me a bettr length of life. At least that is what I think it's supposed to do. I'm also on an untifungal called Mepron so that I don't end up with fungal infections in my lungs.Life has changed so much and I'm totally resentful of that. Here it is Jan. 11 and I've had two Christmases. I have four more to go, if I every have the oomph to actually wrap. I can't do big groups so social occasions are kept to small groups of 3 or 4 people. Otherwise I might as well just curl up on the floor and go to sleep.I'll try to read more consistently and write more but way shorter posts. I can't wait to get to know some of you. BTW, I live in Edmonton, Alberta Canada, just in case there are other Canucks here.Pat

No virus found in this incoming message.Checked by AVG - www.avg.com Version: 9.0.725 / Virus Database: 270.14.137/2617 - Release Date: 01/12/10 11:35:00

[Guest guest]

Welcome to the group Pat.

I was depressed too when i was diagnosed, but now i have God in my heart and he keeps me going. One day at a time. Tomorrow is not certain for anybody.

I wish you well.

G.

36 years old.

Baton Rouge LA.

Scleroderma 2007, PF and COPD 2008, Achalasia of the Esophagus 2009

Subject: Got behind in my reading and Prednisone/azithoprinTo: Breathe-Support Date: Monday, January 11, 2010, 12:10 PM

Joined the group and said hello. Then I disappeared for three weeks. I somehow managed to get pneumonia just before Christmas. This is the first time I've got sick since my diagnosis last February and I never want to get sick like that again. I seriously thought I was going to die and scared me and my family to death.I wish I had some answers to the question "why". Maybe the better question is "why me?". I haven't had one of those nice lives and have managed to maintain some sort of sanity but this pulmonary fibrosis is just too much. Being told a couple of days aftr my 55 birthday that I would be doing good if I lived 5 years was really not what I expected to ever hear. And because I've been so sick, it really is my husband and family that have been going through hell since my diagnosis. I'm finally feeling well enough to be like my old self for a couple of hours a day and I love it.I've been on some type of cortecosteroid since

last Feb when I was first sick. Right now I'm on 60 mg of Prednison daily and I really don't like it - or what it does to my body. But it's supposed to help so I'm going to keep taking it. I'm also on azothiaprine - 150 mg daily. This is so that my body stops fighting my lungs. Maybe that way the disease process can be slowed down - giving me a bettr length of life. At least that is what I think it's supposed to do. I'm also on an untifungal called Mepron so that I don't end up with fungal infections in my lungs.Life has changed so much and I'm totally resentful of that. Here it is Jan. 11 and I've had two Christmases. I have four more to go, if I every have the oomph to actually wrap. I can't do big groups so social occasions are kept to small groups of 3 or 4 people. Otherwise I might as well just curl up on the floor and go to sleep.I'll try to read more consistently and write more but way shorter posts. I can't wait to get to know

some of you. BTW, I live in Edmonton, Alberta Canada, just in case there are other Canucks here.Pat