Re: PF from radiation

[Guest guest]

Cees,

First of all, no one is going to "give you hell". What you need is a hug and some solutions. Unfortunately I'm about 2800 miles to your east so that lets the hug out and solutions to our problems are few and far between aren't they?

From a practical point of view it just feels like you need a reason to get up in the morning. Have you thought about volunteering in your community? You are an intelligent, well educated woman Cees, and there are many places where your strengths and talents could be put to good use. The board has been good for me. Moderating here has helped me regain my sense of perspective about my own situation. But a few months ago I realized I needed to do something that would also get me out of the house and away from the computer. I haven't mentioned it here before but I'm training to be a "court appointed special advocate" or guardian ad litem in the family court system. I will be assigned to be the voice of one child. I'm told that most volunteer g.a.l.'s devote approximately 6-8 hours a month. I'm looking forward to getting started.

I only use this as an example. There are tons of opportunities in any community. Doing something for someone else is the best way to regain a sense of perspective about our own situations. Since your family isn't near, reaching out into your community is the next logical step. Many of us have similar family situations to what you describe. My brothers are content to ignore my illness going on the theory I suppose that if they don't acknowledge it, it doesn't exist.

Your medical insurance situation is a huge problem for you and I share your frustration. The fact that there is no pulmonary rehab is borderline criminal in my opinion. I know that one of our members (I think it's Joyce Rudy) participates in a "medically supervised exercise" program. You might want to ask around if there's something like that you can join. Failing that you might ask your doctor if he can prescribe a session or two with a respiratory therapist and/or a physical therapist to come up with an exercise program you can carry out on your own if necessary. It's less than ideal but it would be something.

I also want to thank you for your offer to help with editing a book of the personal stories of our members. This is a huge project and is an idea that has been floating around here for a long time. I think that it may be daunting for many of us to consider writing about our personal struggles but your offer stands and I appreciate it more than you know.

Cees, I don't know if any of this helps in any way at all. Please stick with us. I think this board can help us all just to feel less alone. The isolation of this disease, of feeling as though there is no one else who understands is overwhelming. That's the most important function of this board to dispel that and roll back that dark cloud. Come here and you instantly know you're not alone.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Mon, November 9, 2009 3:48:49 AMSubject: Re: PF from radiation

Thank you, Bruce, for your answers to Dawn about quality of life because I desperately needed to hear it. I don't really feel any better, but I'm going to try to implement some of your suggestions. I feel like such a whining hypochondriac compared to you, Dawn. I'm still in the early stages of PF ( & likely other diseases but nobody seems to know yet.) But I've been really depressed lately & wondering why I should even try to go on. (BTW, I'm already on anti-depressants & have been for awhile. I KNOW they've been helping.)I'm depressed about problems that can't be made better by anti-depressants. Of course, No. 1 is this damn disease.I have no family w/in 700 miles. Divorced many years & no children. My siblings are spread out across the country & both parents are gone already. After my dx, I decided to host our 2nd family reunion at my house last summer because I didn't know what my future held. My

family was so surprised by "how good I looked" that they figure I must be exaggerating about this disease & don't want to hear about it anymore. (I saw some comments about this phenomenon on the board recently.)I'm not working anymore because of this disease & pretty much stopped seeing most of my friends a couple years ago because of a major blow-up w/my best friend. (BTW, I already tried to reconcile but she blew me off. Ironically, she's a respiratory therapist. But our blow-up was over how badly she treats her own mother, who has COPD. This was before I had any idea about my own disease.)My dearest friend now is in the last stages of emphysema & will be leaving us soon. He's actually more active than I am & puts me to shame. But I just don't seem to care enough about my own life to get active.I have a TERRIBLE attitude. I'm really angry about being stuck w/an HMO that won't let me go to a Center for Excellence

hospital or even get a 2nd opinion outside of its own program doctors unless I pay. It DOESN'T EVEN HAVE a pulmonary rehab program! And my pulmodoc got upset w/my email questions & refused to answer except during appts that I have to co-pay. (BTW, I was finally able to get an appt for next Thurs.)I spend most of my time on the phone & computer fighting w/bureaucracies. It took 8 months to get my cell phone co. to finally admit it overcharged me & return the money. Meanwhile, it cut off my service & put me thru hell. I'm fighting with one credit card co. for refusing to cancel pmt. to another business that defrauded me, & I'm fighting w/another credit card co. that just raised my rate to 24.99%. I was paying 3.99% because I have really good credit & have never been late. (I think they've learned I'm on disability & figure I'm an easy touch now.) I can stop using the card, but that won't help me pay the

balance.I'm filling out form after form to apply for anything that might help me, but they take SO long. I don't leave the house much anymore except for medical & dental appts, to buy groceries or visit my dying friend.My dog & 2 cats all died last year of old age, which devastated me. (Lesson learned -- NEVER get all your pets around the same age.) I finally got a darling 6-yr-old cat a few months ago. She's the one bright spot in my life.There's a saying about how life w/o purpose has no value & that's how I feel. I got really excited about the PF book idea or even writing a letter to the AMA & volunteered to collect & edit information. But nobody sent me anything or even acknowledged my offer.I'm so sorry to just whine on & on, especially since physically, I still have it so much better than many of you. But it just doesn't seem like there's anything to look forward to except worse medical

problems -- no purpose, no reason to keep going.I know I deserve it if you guys give me hell, but I honestly don't think I could handle it unless you do it really gently. I burst into tears over just about everything these days.Cees, S CalifPF 10/08> >> > Hi, I'm new here and need to hear from others who feel as old as I do.> I'm only 43 but my body is about 20 years older. I've battled Hodgkin's> Lymphoma 7x since 1995 and am still in the fight. Now I have PF, am on> oxygen 24/7, use a bi-pap and get out of breath with any movement. I am> in a rehab program 3x a week and was told I have a week diaphragm too> due to being laid up after some stomach surgery, so I am going to try> singing lessons to help me breath differently. I am so tired from> breathing, it takes so much energy. I am in a support group for the> cancer and in private therapy for everything else. But when does your> quality of life take priority over trying

endlessly to beat all these> health issues? I have a king of a husband and a huge loving support> system but none of that can help me breath any better. Sorry for> complaining so soon, it's just so tough and I know someone out there has> walked in my shoes, I just need to know how do you keep on walking???> >>

[Guest guest]

Dawn

do you live in Pennsylvania? where?

I live in LAnghorne, a suburb of Philly, we have someone in Philly and someone in a different suburb of philly

there are a few others in PA, a little further from philly

if you live in the Philly area, which hospital do you go to?

yesterday was a gorgeous day here, we worked outside and in the garage -- i was exhausted afterwards, but it was a good exhaustion

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

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: PF from radiationTo: Breathe-Support Date: Sunday, November 8, 2009, 10:22 PM

Hi Bruce, Thanks for writing back, luckily my O2 level is always good, 95 or above. I'm on 2 liters. Wow, lots of doc appts., you make many good points for a good quality of life. Making time for fun is just as important as making time for docs. I actually sat outside on our deck this morning and just enjoyed the nice weather here in PA, it was very relaxing. Thanks for some good ideas on quality, wishing you the same back with a smile.> >> > Hi, I'm new here and need to hear from others who feel as old as I do.> I'm only 43 but my body is about 20 years older. I've battled Hodgkin's> Lymphoma 7x since 1995 and am still in the fight. Now I have PF, am on> oxygen 24/7, use a bi-pap and get out of breath with any movement. I am> in a rehab program 3x a week and was told I have a week diaphragm too> due to being laid up after some stomach surgery, so I am going to try> singing

lessons to help me breath differently. I am so tired from> breathing, it takes so much energy. I am in a support group for the> cancer and in private therapy for everything else. But when does your> quality of life take priority over trying endlessly to beat all these> health issues? I have a king of a husband and a huge loving support> system but none of that can help me breath any better. Sorry for> complaining so soon, it's just so tough and I know someone out there has> walked in my shoes, I just need to know how do you keep on walking???> >>

[Guest guest]

Dawn

i never notice rehab making a dent in how I feel until i stop going for a while

then i notice the decompensation (i think that is the right word) and the need to build myself up again

it does get harder each time

i used to be able to do the treadmill and then use the other machines

now i need to sit and rest after the treadmill before using the other machines

i "hate" going to rehab, but it is one of the things that i have to do and kind of view going to rehab as my "job"

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

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: PF from radiationTo: Breathe-Support Date: Sunday, November 8, 2009, 10:16 PM

Hi MB, I know we all have our crosses to bear and I'm sorry for yours as well. Yes, it is pulmonary rehab but it really hasn't made a dent in how I feel, I've been at it almost a year. My onco doc raised my prednisone again thinking that may be a possible cause for my worsening breathing but no change as of yet. It is nice to hear I am not alone in all this breathing stuff, I actually watch people take deep breaths and say, wow, how cool! I think I'll like it here, thanks.>> Dawn,> Wow, I don't even know what to say except that you are not alone. There are many of us here who have multiple diagnosis and have been fighting to live for years. I'm a

few years older than you (I'm 50) have a form of pulmonary fibrosis called NSIP and also have dermatomysitis. I've not had to battle cancer and can only imagine what you have gone through. > > I do know about the overwhelming fatigue that comes from just trying to breathe. To do something that most people on this planet can afford to take for granted takes a disproportionate percentage of our effort and energy. Having a diaphragm that is weak is not uncommon. The singing lessons sound like a really interesting approach. I'm glad to hear you are in a rehab program. Is it pulmonary rehab?> > I wish that I had a magic wand and could make this all go away for you and for all of us. What I can do though is offer you the support and friendship of this group. Please ask any questions you want to, bring up whatever topics you wish and know that the

rest of us are walking this road with you. >  > Beth> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08>  >  > > > > > ____________ _________ _________ __> From: Dawn <dawn.urso@. ..>> To: Breathe-Support@ yahoogroups. com> Sent: Sun, November 8, 2009 7:54:21 PM> Subject: PF from radiation> >  > Hi, I'm new here and need to hear from others who feel as old as I do. I'm only 43 but my body is about 20 years older. I've battled Hodgkin's Lymphoma 7x since 1995 and am still in the fight. Now I have PF, am on oxygen 24/7, use a bi-pap and get out of breath with any movement. I am in a rehab program

3x a week and was told I have a week diaphragm too due to being laid up after some stomach surgery, so I am going to try singing lessons to help me breath differently. I am so tired from breathing, it takes so much energy. I am in a support group for the cancer and in private therapy for everything else. But when does your quality of life take priority over trying endlessly to beat all these health issues? I have a king of a husband and a huge loving support system but none of that can help me breath any better. Sorry for complaining so soon, it's just so tough and I know someone out there has walked in my shoes, I just need to know how do you keep on> walking???>

[Guest guest]

Joyce,

It makes perfect sense. I think that what you say is exactly right, we have look for a new kind of quality of life. The pleasures may be smaller and simpler but they are there.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Mon, November 9, 2009 8:30:04 AMSubject: Re: PF from radiation

i think maybe the quality of life becomes the issue and the goals become quality of life

don't know if this makes sense

we are looking at a different kind of quality of life

my first issue every day is walking the dog

i have to fill up the oxygen tank just to take him for a walk

but the good news is that I am able to take the dog for a walk

i guess what i am trying to say is that you have to re-evaluate what you used to do and look at what you are able to do

find new things to do that are within your abilities

example -- i just started taking art classes

doing the pencil sketches and the colored pencil drawings is rewarding and is a new accomplishment for me

i go to the class once a week --- meet new people -- everybody has something -- if it's not oxygen, it's a cane, or a walker, or a wheelchair

people at rehab look healthy, but they have all sorts of stuff, but we get to socialize at rehab too

i never went to a gym before this diagnosis

when told that the goal was for me to do the treadmill for at least 20 minutes, i thought they were "nuts", now i do at least 24 minutes -- the attention span on the treadmill is my issue --- need to read or focus on something interesting on TV

yes there are things that i would rather be doing -- like working, traveling, running a million errands, but just have to plan things differently

hope this makes sense

i tend to have difficulty expressing myself the way i want to

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

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund. org

From: Beth <mbmurtha (AT) yahoo (DOT) com>Subject: Re: PF from radiationTo: Breathe-Support@ yahoogroups. comDate: Sunday, November 8, 2009, 8:19 PM

Dawn,

Wow, I don't even know what to say except that you are not alone. There are many of us here who have multiple diagnosis and have been fighting to live for years. I'm a few years older than you (I'm 50) have a form of pulmonary fibrosis called NSIP and also have dermatomysitis. I've not had to battle cancer and can only imagine what you have gone through.

I do know about the overwhelming fatigue that comes from just trying to breathe. To do something that most people on this planet can afford to take for granted takes a disproportionate percentage of our effort and energy. Having a diaphragm that is weak is not uncommon. The singing lessons sound like a really interesting approach. I'm glad to hear you are in a rehab program. Is it pulmonary rehab?

I wish that I had a magic wand and could make this all go away for you and for all of us. What I can do though is offer you the support and friendship of this group. Please ask any questions you want to, bring up whatever topics you wish and know that the rest of us are walking this road with you.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

From: Dawn <dawn.urso (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Sun, November 8, 2009 7:54:21 PMSubject: PF from radiation

Hi, I'm new here and need to hear from others who feel as old as I do. I'm only 43 but my body is about 20 years older. I've battled Hodgkin's Lymphoma 7x since 1995 and am still in the fight. Now I have PF, am on oxygen 24/7, use a bi-pap and get out of breath with any movement. I am in a rehab program 3x a week and was told I have a week diaphragm too due to being laid up after some stomach surgery, so I am going to try singing lessons to help me breath differently. I am so tired from breathing, it takes so much energy. I am in a support group for the cancer and in private therapy for everything else. But when does your quality of life take priority over trying endlessly to beat all these health issues? I have a king of a husband and a huge loving support system but none of that can help me breath any better. Sorry for complaining so soon, it's just so tough and I know someone out there has walked in my shoes, I just need to know how do you keep

on walking???

[Guest guest]

Cees

i hear your frustrations

sounds like you need a therapist

didn't realize how important working on the book would be for you

i would like to see a book of "practical tips for living with" pulmonary fibrosis

i even collected some tips that have come along over the years

when my daughter was diagnosed with ulcerative colitis, the organization (i forget the name) sold 3 books at the first support group meeting that i went to (this is about 20 years ago)

2 of the books were about the diseases and the complications -- at that time i couldn't read them -- too upsetting

1 of the books was about living with the diseases -- that was the most helpful to me at the time

i gave all of the books to my daughter -- don't know what she did with them

"Crohns and Colitis Foundation" is the name of the organization

so i will look for the list of tips and send it

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

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: PF from radiationTo: Breathe-Support Date: Monday, November 9, 2009, 3:48 AM

Thank you, Bruce, for your answers to Dawn about quality of life because I desperately needed to hear it. I don't really feel any better, but I'm going to try to implement some of your suggestions. I feel like such a whining hypochondriac compared to you, Dawn. I'm still in the early stages of PF ( & likely other diseases but nobody seems to know yet.) But I've been really depressed lately & wondering why I should even try to go on. (BTW, I'm already on anti-depressants & have been for awhile. I KNOW they've been helping.)I'm depressed about problems that can't be made better by anti-depressants. Of course, No. 1 is this damn disease.I have no family w/in 700 miles. Divorced many years & no children. My siblings are spread out across the country & both parents are gone already. After my dx, I decided to host our 2nd family reunion at my house last summer because I didn't know what my future held. My

family was so surprised by "how good I looked" that they figure I must be exaggerating about this disease & don't want to hear about it anymore. (I saw some comments about this phenomenon on the board recently.)I'm not working anymore because of this disease & pretty much stopped seeing most of my friends a couple years ago because of a major blow-up w/my best friend. (BTW, I already tried to reconcile but she blew me off. Ironically, she's a respiratory therapist. But our blow-up was over how badly she treats her own mother, who has COPD. This was before I had any idea about my own disease.)My dearest friend now is in the last stages of emphysema & will be leaving us soon. He's actually more active than I am & puts me to shame. But I just don't seem to care enough about my own life to get active.I have a TERRIBLE attitude. I'm really angry about being stuck w/an HMO that won't let me go to a Center for Excellence

hospital or even get a 2nd opinion outside of its own program doctors unless I pay. It DOESN'T EVEN HAVE a pulmonary rehab program! And my pulmodoc got upset w/my email questions & refused to answer except during appts that I have to co-pay. (BTW, I was finally able to get an appt for next Thurs.)I spend most of my time on the phone & computer fighting w/bureaucracies. It took 8 months to get my cell phone co. to finally admit it overcharged me & return the money. Meanwhile, it cut off my service & put me thru hell. I'm fighting with one credit card co. for refusing to cancel pmt. to another business that defrauded me, & I'm fighting w/another credit card co. that just raised my rate to 24.99%. I was paying 3.99% because I have really good credit & have never been late. (I think they've learned I'm on disability & figure I'm an easy touch now.) I can stop using the card, but that won't help me pay the

balance.I'm filling out form after form to apply for anything that might help me, but they take SO long. I don't leave the house much anymore except for medical & dental appts, to buy groceries or visit my dying friend.My dog & 2 cats all died last year of old age, which devastated me. (Lesson learned -- NEVER get all your pets around the same age.) I finally got a darling 6-yr-old cat a few months ago. She's the one bright spot in my life.There's a saying about how life w/o purpose has no value & that's how I feel. I got really excited about the PF book idea or even writing a letter to the AMA & volunteered to collect & edit information. But nobody sent me anything or even acknowledged my offer.I'm so sorry to just whine on & on, especially since physically, I still have it so much better than many of you. But it just doesn't seem like there's anything to look forward to except worse medical

problems -- no purpose, no reason to keep going.I know I deserve it if you guys give me hell, but I honestly don't think I could handle it unless you do it really gently. I burst into tears over just about everything these days.Cees, S CalifPF 10/08> >> > Hi, I'm new here and need to hear from others who feel as old as I do.> I'm only 43 but my body is about 20 years older. I've battled Hodgkin's> Lymphoma 7x since 1995 and am still in the fight. Now I have PF, am on> oxygen 24/7, use a bi-pap and get out of breath with any movement. I am> in a rehab program 3x a week and was told I have a week diaphragm too> due to being laid up after some stomach surgery, so I am going to try> singing lessons to help me breath differently. I am so tired from> breathing, it takes so much energy. I am in a support group for the> cancer and in private therapy for everything

else. But when does your> quality of life take priority over trying endlessly to beat all these> health issues? I have a king of a husband and a huge loving support> system but none of that can help me breath any better. Sorry for> complaining so soon, it's just so tough and I know someone out there has> walked in my shoes, I just need to know how do you keep on walking???> >>

[Guest guest]

Cees

i just looked for my list of tips , but can't find them

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

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: PF from radiationTo: Breathe-Support Date: Monday, November 9, 2009, 3:48 AM

Thank you, Bruce, for your answers to Dawn about quality of life because I desperately needed to hear it. I don't really feel any better, but I'm going to try to implement some of your suggestions. I feel like such a whining hypochondriac compared to you, Dawn. I'm still in the early stages of PF ( & likely other diseases but nobody seems to know yet.) But I've been really depressed lately & wondering why I should even try to go on. (BTW, I'm already on anti-depressants & have been for awhile. I KNOW they've been helping.)I'm depressed about problems that can't be made better by anti-depressants. Of course, No. 1 is this damn disease.I have no family w/in 700 miles. Divorced many years & no children. My siblings are spread out across the country & both parents are gone already. After my dx, I decided to host our 2nd family reunion at my house last summer because I didn't know what my future held. My

family was so surprised by "how good I looked" that they figure I must be exaggerating about this disease & don't want to hear about it anymore. (I saw some comments about this phenomenon on the board recently.)I'm not working anymore because of this disease & pretty much stopped seeing most of my friends a couple years ago because of a major blow-up w/my best friend. (BTW, I already tried to reconcile but she blew me off. Ironically, she's a respiratory therapist. But our blow-up was over how badly she treats her own mother, who has COPD. This was before I had any idea about my own disease.)My dearest friend now is in the last stages of emphysema & will be leaving us soon. He's actually more active than I am & puts me to shame. But I just don't seem to care enough about my own life to get active.I have a TERRIBLE attitude. I'm really angry about being stuck w/an HMO that won't let me go to a Center for Excellence

hospital or even get a 2nd opinion outside of its own program doctors unless I pay. It DOESN'T EVEN HAVE a pulmonary rehab program! And my pulmodoc got upset w/my email questions & refused to answer except during appts that I have to co-pay. (BTW, I was finally able to get an appt for next Thurs.)I spend most of my time on the phone & computer fighting w/bureaucracies. It took 8 months to get my cell phone co. to finally admit it overcharged me & return the money. Meanwhile, it cut off my service & put me thru hell. I'm fighting with one credit card co. for refusing to cancel pmt. to another business that defrauded me, & I'm fighting w/another credit card co. that just raised my rate to 24.99%. I was paying 3.99% because I have really good credit & have never been late. (I think they've learned I'm on disability & figure I'm an easy touch now.) I can stop using the card, but that won't help me pay the

balance.I'm filling out form after form to apply for anything that might help me, but they take SO long. I don't leave the house much anymore except for medical & dental appts, to buy groceries or visit my dying friend.My dog & 2 cats all died last year of old age, which devastated me. (Lesson learned -- NEVER get all your pets around the same age.) I finally got a darling 6-yr-old cat a few months ago. She's the one bright spot in my life.There's a saying about how life w/o purpose has no value & that's how I feel. I got really excited about the PF book idea or even writing a letter to the AMA & volunteered to collect & edit information. But nobody sent me anything or even acknowledged my offer.I'm so sorry to just whine on & on, especially since physically, I still have it so much better than many of you. But it just doesn't seem like there's anything to look forward to except worse medical

problems -- no purpose, no reason to keep going.I know I deserve it if you guys give me hell, but I honestly don't think I could handle it unless you do it really gently. I burst into tears over just about everything these days.Cees, S CalifPF 10/08> >> > Hi, I'm new here and need to hear from others who feel as old as I do.> I'm only 43 but my body is about 20 years older. I've battled Hodgkin's> Lymphoma 7x since 1995 and am still in the fight. Now I have PF, am on> oxygen 24/7, use a bi-pap and get out of breath with any movement. I am> in a rehab program 3x a week and was told I have a week diaphragm too> due to being laid up after some stomach surgery, so I am going to try> singing lessons to help me breath differently. I am so tired from> breathing, it takes so much energy. I am in a support group for the> cancer and in private therapy for everything

else. But when does your> quality of life take priority over trying endlessly to beat all these> health issues? I have a king of a husband and a huge loving support> system but none of that can help me breath any better. Sorry for> complaining so soon, it's just so tough and I know someone out there has> walked in my shoes, I just need to know how do you keep on walking???> >>

[Guest guest]

Thanks Beth

after reading your previous post, i see that you have done basically the same thing

i too thought i was spending too much time on the computer

starting seeing a therapist recently and after describing the time spent on the computer, she suggested i compare it to going to work and that this is the first job of the day

how exciting to becom an advocate for children in court -- that should be so rewarding

one of the most rewarding jobs that i had was tutoring children and when they "got it" it was wonderful

the only reason that i no longer tutor is because children are always getting sick and contagious

otherwise it is something that i would still be able to do physically

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

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: PF from radiationTo: Breathe-Support Date: Monday, November 9, 2009, 8:59 AM

Joyce,

It makes perfect sense. I think that what you say is exactly right, we have look for a new kind of quality of life. The pleasures may be smaller and simpler but they are there.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

From: Joyce T Rosenberg <pinkrockybeach@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Mon, November 9, 2009 8:30:04 AMSubject: Re: PF from radiation

i think maybe the quality of life becomes the issue and the goals become quality of life

don't know if this makes sense

we are looking at a different kind of quality of life

my first issue every day is walking the dog

i have to fill up the oxygen tank just to take him for a walk

but the good news is that I am able to take the dog for a walk

i guess what i am trying to say is that you have to re-evaluate what you used to do and look at what you are able to do

find new things to do that are within your abilities

example -- i just started taking art classes

doing the pencil sketches and the colored pencil drawings is rewarding and is a new accomplishment for me

i go to the class once a week --- meet new people -- everybody has something -- if it's not oxygen, it's a cane, or a walker, or a wheelchair

people at rehab look healthy, but they have all sorts of stuff, but we get to socialize at rehab too

i never went to a gym before this diagnosis

when told that the goal was for me to do the treadmill for at least 20 minutes, i thought they were "nuts", now i do at least 24 minutes -- the attention span on the treadmill is my issue --- need to read or focus on something interesting on TV

yes there are things that i would rather be doing -- like working, traveling, running a million errands, but just have to plan things differently

hope this makes sense

i tend to have difficulty expressing myself the way i want to

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

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund. org

From: Beth <mbmurtha (AT) yahoo (DOT) com>Subject: Re: PF from radiationTo: Breathe-Support@ yahoogroups. comDate: Sunday, November 8, 2009, 8:19 PM

Dawn,

Wow, I don't even know what to say except that you are not alone. There are many of us here who have multiple diagnosis and have been fighting to live for years. I'm a few years older than you (I'm 50) have a form of pulmonary fibrosis called NSIP and also have dermatomysitis. I've not had to battle cancer and can only imagine what you have gone through.

I do know about the overwhelming fatigue that comes from just trying to breathe. To do something that most people on this planet can afford to take for granted takes a disproportionate percentage of our effort and energy. Having a diaphragm that is weak is not uncommon. The singing lessons sound like a really interesting approach. I'm glad to hear you are in a rehab program. Is it pulmonary rehab?

I wish that I had a magic wand and could make this all go away for you and for all of us. What I can do though is offer you the support and friendship of this group. Please ask any questions you want to, bring up whatever topics you wish and know that the rest of us are walking this road with you.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

From: Dawn <dawn.urso (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Sun, November 8, 2009 7:54:21 PMSubject: PF from radiation

Hi, I'm new here and need to hear from others who feel as old as I do. I'm only 43 but my body is about 20 years older. I've battled Hodgkin's Lymphoma 7x since 1995 and am still in the fight. Now I have PF, am on oxygen 24/7, use a bi-pap and get out of breath with any movement. I am in a rehab program 3x a week and was told I have a week diaphragm too due to being laid up after some stomach surgery, so I am going to try singing lessons to help me breath differently. I am so tired from breathing, it takes so much energy. I am in a support group for the cancer and in private therapy for everything else. But when does your quality of life take priority over trying endlessly to beat all these health issues? I have a king of a husband and a huge loving support system but none of that can help me breath any better. Sorry for complaining so soon, it's just so tough and I know someone out there has walked in my shoes, I just need to know how do you keep

on walking???

[Guest guest]

Cees,I am right here in Arizona, I have Verizon so put me in your 'circle' or whatever and call me.. my cell is . Anyone can call me anytime, you may get my voicemail but I will call back right away. I am not a counselor but I have been told I listen well and I have been dealing with this for going on 8 years now. Maybe just talking we can figure out something regarding the insurance. You are not being silly or whining, this damn disease is a life changing event and I get how you feel. Call meDyane Phoenix ifp 02> > >> > > Hi, I'm new here and need to hear from others who feel as old as I do.> > I'm only 43 but my body is about 20 years older. I've battled Hodgkin's> > Lymphoma 7x since 1995 and am still in the fight. Now I have PF, am on> > oxygen 24/7, use a bi-pap and get out of breath with any movement. I am> > in a rehab program 3x a week and was told I have a week diaphragm too> > due to being laid up after some stomach surgery, so I am going to try> > singing lessons to help me breath differently. I am so tired from> > breathing, it takes so much energy. I am in a support group for the> > cancer and in private therapy for everything else. But when does your> > quality of life take priority over trying endlessly to beat all these> > health issues? I have a king of a husband and a huge loving support> > system but none of that can help me breath any better. Sorry for> > complaining so soon, it's just so tough and I know someone out there has> > walked in my shoes, I just need to know how do you keep on walking???> > >> >>

[Guest guest]

I'll give you one word COUNSELING. I'm serious as long before this

disease I felt many of the things you describe. It can and will help as

right now you feel overwhelmed by so many factors and counseling can

help you organize and deal with all those thoughts. I recall waiting for

disability rulings and social security and feeling so much inner turmoil

over those while trying to deal with everything else. Please please. The

right counselor will be able to help you.

> > >

> > > Hi, I'm new here and need to hear from others who feel as old as I

do.

> > I'm only 43 but my body is about 20 years older. I've battled

Hodgkin's

> > Lymphoma 7x since 1995 and am still in the fight. Now I have PF, am

on

> > oxygen 24/7, use a bi-pap and get out of breath with any movement. I

am

> > in a rehab program 3x a week and was told I have a week diaphragm

too

> > due to being laid up after some stomach surgery, so I am going to

try

> > singing lessons to help me breath differently. I am so tired from

> > breathing, it takes so much energy. I am in a support group for the

> > cancer and in private therapy for everything else. But when does

your

> > quality of life take priority over trying endlessly to beat all

these

> > health issues? I have a king of a husband and a huge loving support

> > system but none of that can help me breath any better. Sorry for

> > complaining so soon, it's just so tough and I know someone out there

has

> > walked in my shoes, I just need to know how do you keep on

walking???

> > >

> >

>

[Guest guest]

Pink

It all makes sense. Funny how most of us were so good at jobs and

working toward goals there but we never saw quality of life and pleasure

as such a goal also requiring some work on our part. My natural tendency

would have been to have locked myself away at home and never do

anything. But, I worked hard and I learned and there is rarely ever a

day I don't get out and do something, even if its just aimlessly walk

through the aisles of a store or go to the post office and convenience

store. It's amazing how normal that all seems now when there was a time

that the only reason I got out at all was knowing I'd have to report

what I did to my counselor and I couldn't " flunk my homework

assignment. "

>

>

> From: Beth mbmurtha@...

> Subject: Re: PF from radiation

> To: Breathe-Support

> Date: Sunday, November 8, 2009, 8:19 PM

>

>

> Â

>

>

>

>

>

>

> Dawn,

> Wow, I don't even know what to say except that you are not

alone. There are many of us here who have multiple diagnosis and

have been fighting to live for years. I'm a few years older than you

(I'm 50) have a form of pulmonary fibrosis called NSIP and also have

dermatomysitis. I've not had to battle cancer and can only imagine what

you have gone through.Â

> Â

> I do know about the overwhelming fatigue that comes from just

trying to breathe. To do something that most people on this planet

can afford to take for granted takes a disproportionate percentage of

our effort and energy. Having a diaphragm that is weak is not uncommon.

The singing lessons sound like a really interesting approach. I'm

glad to hear you are in a rehab program. Is it pulmonary rehab?

> Â

> I wish that I had a magic wand and could make this all goÂ

away for you and for all of us. What IÂ can do though is offer you

the support and friendship of this group. Please ask any questions you

want to, bring up whatever topics you wish and know that the rest of us

are walking this road with you.Â

> Â

> Beth

> Moderator

> Fibrotic NSIP 06/06 Dermatomyositis 11/08

> Â

> Â

>

>

>

>

>

>

> From: Dawn dawn.urso (AT) yahoo (DOT) com>

> To: Breathe-Support@ yahoogroups. com

> Sent: Sun, November 8, 2009 7:54:21 PM

> Subject: PF from radiation

>

> Â

>

> Hi, I'm new here and need to hear from others who feel as old as I do.

I'm only 43 but my body is about 20 years older. I've battled Hodgkin's

Lymphoma 7x since 1995 and am still in the fight. Now I have PF, am on

oxygen 24/7, use a bi-pap and get out of breath with any movement. I am

in a rehab program 3x a week and was told I have a week diaphragm too

due to being laid up after some stomach surgery, so I am going to try

singing lessons to help me breath differently. I am so tired from

breathing, it takes so much energy. I am in a support group for the

cancer and in private therapy for everything else. But when does your

quality of life take priority over trying endlessly to beat all these

health issues? I have a king of a husband and a huge loving support

system but none of that can help me breath any better. Sorry for

complaining so soon, it's just so tough and I know someone out there has

walked in my shoes, I just need to know how do you keep on

> walking???

>

[Guest guest]

Cees

another important chapter would be going on social security disabilty and medicare

a lot of us have doen that

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

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: PF from radiationTo: Breathe-Support Date: Monday, November 9, 2009, 11:26 AM

PinkIt all makes sense. Funny how most of us were so good at jobs andworking toward goals there but we never saw quality of life and pleasureas such a goal also requiring some work on our part. My natural tendencywould have been to have locked myself away at home and never doanything. But, I worked hard and I learned and there is rarely ever aday I don't get out and do something, even if its just aimlessly walkthrough the aisles of a store or go to the post office and conveniencestore. It's amazing how normal that all seems now when there was a timethat the only reason I got out at all was knowing I'd have to reportwhat I did to my counselor and I couldn't "flunk my homeworkassignment.">>> Subject: Re: PF from radiation> To: Breathe-Support@ yahoogroups. com> Date: Sunday, November 8, 2009, 8:19 PM>>> Â>>>>>>> Dawn,> Wow, I don't even know what to say except that you are notalone. There are many of us here who have multiple diagnosis andhave been fighting to live for years. I'm a few years older than you(I'm 50) have a form of pulmonary fibrosis called NSIP and also havedermatomysitis. I've not had to battle cancer and can only imagine whatyouÂ

have gone through.Â> Â> I do know about the overwhelming fatigue that comes from justtrying to breathe. To do something that most people on this planetcan afford to take for granted takes a disproportionate percentage ofour effort and energy. Having a diaphragm that is weak is not uncommon.The singing lessons sound like a really interesting approach. I'mglad to hear you are in a rehab program. Is it pulmonary rehab?> Â> I wish that I had a magic wand and could make this all goÂaway for you and for all of us. What I can do though is offer youthe support and friendship of this group. Please ask any questions youwant to, bring up whatever topics you wish and know that the rest of usare walking this road with you.Â> Â> Beth> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08> Â>

Â>>>>>>> From: Dawn dawn.urso (AT) yahoo (DOT) com>> To: Breathe-Support@ yahoogroups. com> Sent: Sun, November 8, 2009 7:54:21 PM> Subject: PF from radiation>> Â>> Hi, I'm new here and need to hear from others who feel as old as I do.I'm only 43 but my body is about 20 years older. I've battled Hodgkin'sLymphoma 7x since 1995 and am still in the fight. Now I have PF, am onoxygen 24/7, use a bi-pap and get out of breath with any movement. I amin a rehab program 3x a week and was told I have a week diaphragm toodue to being laid up after some stomach surgery, so I am going to trysinging lessons to help me breath differently. I am so tired frombreathing, it takes so much energy. I am in a support group for thecancer and in private therapy for everything else. But when does yourquality of life take priority over

trying endlessly to beat all thesehealth issues? I have a king of a husband and a huge loving supportsystem but none of that can help me breath any better. Sorry forcomplaining so soon, it's just so tough and I know someone out there haswalked in my shoes, I just need to know how do you keep on> walking???>

[Guest guest]

This makes sense to me Joyce. I keep feeling like I'm walking into a wall as far as being able to do what I used to.It's sorta like "count your blessings" too.Change is not easily excepted, but change can be good. I see the good in things that I know I probably missed before. PJ in OH, 54, IPF 09, Sjogren's 95 PF from radiation

Hi, I'm new here and need to hear from others who feel as old as I do. I'm only 43 but my body is about 20 years older. I've battled Hodgkin's Lymphoma 7x since 1995 and am still in the fight. Now I have PF, am on oxygen 24/7, use a bi-pap and get out of breath with any movement. I am in a rehab program 3x a week and was told I have a week diaphragm too due to being laid up after some stomach surgery, so I am going to try singing lessons to help me breath differently. I am so tired from breathing, it takes so much energy. I am in a support group for the cancer and in private therapy for everything else. But when does your quality of life take priority over trying endlessly to beat all these health issues? I have a king of a husband and a huge loving support system but none of that can help me breath any better. Sorry for complaining so soon, it's just so tough and I know someone out there has walked in my shoes, I just need to know how do you keepon walking???

[Guest guest]

Bless you all!

Your outpouring of compassion & understanding overwhelmed me. I honestly don't

know how I could survive this without your support. With Thanksgiving coming up,

I've been hard-pressed to think of anything to be grateful for, but now I know.

I will thank God every day for the rest of my life for leading me to this caring

group of people.

I intend to respond individually to every single one of you who replied to my

posting because each of you came up with wonderful thoughts, ideas & stories to

help me. Much of it was so encouraging, I think it should be included in our

book (more TK on that too).

Love,

Cees, S Calif

PF 10/08

> > >

> > > Hi, I'm new here and need to hear from others who feel as old as I do.

> > I'm only 43 but my body is about 20 years older. I've battled Hodgkin's

> > Lymphoma 7x since 1995 and am still in the fight. Now I have PF, am on

> > oxygen 24/7, use a bi-pap and get out of breath with any movement. I am

> > in a rehab program 3x a week and was told I have a week diaphragm too

> > due to being laid up after some stomach surgery, so I am going to try

> > singing lessons to help me breath differently. I am so tired from

> > breathing, it takes so much energy. I am in a support group for the

> > cancer and in private therapy for everything else. But when does your

> > quality of life take priority over trying endlessly to beat all these

> > health issues? I have a king of a husband and a huge loving support

> > system but none of that can help me breath any better. Sorry for

> > complaining so soon, it's just so tough and I know someone out there has

> > walked in my shoes, I just need to know how do you keep on walking???

> > >

> >

>

[Guest guest]

Thanks for this Cees

<FONT face="comic sans ms" color=#40007f size=3> Soulliere & nbsp; <IMG src="http://us.i1.yimg.com/us.yimg.com/i/mesg/tsmileys2/50.gif"></FONT>

To: Breathe-Support Sent: Mon, November 9, 2009 8:48:51 PMSubject: Re: Re: PF from radiation

Hi Cees.

I went through a period of time when i was very depressed.

I used to sleep all day long, didnt eat, dindt care of anything. Almost end up divorcing my husband, I didnt care about anything at all!

I just wanted to cry and feel sorry about myself.

Somehow i got out of that deep depression. I started reading my bible, praying has been te best medicine for me!

One of my close friends has a son with Autism (I have an autistic son myself) but this boy he is been homeschooled, (my son goes to a public school) I offered my friend to help with homeschooling. I teach him about 6 hours a week.

I have learned about forgiveness, compasion, faith, hope, and now I feel closer to God. I am not as depressed as i used to be. Of course I do have some bad days.But i have a lot to be thankful for.

From: ceesnews <ceesnews (AT) yahoo (DOT) com>Subject: Re: PF from radiationTo: Breathe-Support@ yahoogroups. comDate: Monday, November 9, 2009, 2:48 AM

Thank you, Bruce, for your answers to Dawn about quality of life because I desperately needed to hear it. I don't really feel any better, but I'm going to try to implement some of your suggestions. I feel like such a whining hypochondriac compared to you, Dawn. I'm still in the early stages of PF ( & likely other diseases but nobody seems to know yet.) But I've been really depressed lately & wondering why I should even try to go on. (BTW, I'm already on anti-depressants & have been for awhile. I KNOW they've been helping.)I'm depressed about problems that can't be made better by anti-depressants. Of course, No. 1 is this damn disease.I have no family w/in 700 miles. Divorced many years & no children. My siblings are spread out across the country & both parents are gone already. After my dx, I decided to host our 2nd family reunion at my house last summer because I didn't know what my future held. My

family was so surprised by "how good I looked" that they figure I must be exaggerating about this disease & don't want to hear about it anymore. (I saw some comments about this phenomenon on the board recently.)I'm not working anymore because of this disease & pretty much stopped seeing most of my friends a couple years ago because of a major blow-up w/my best friend. (BTW, I already tried to reconcile but she blew me off. Ironically, she's a respiratory therapist. But our blow-up was over how badly she treats her own mother, who has COPD. This was before I had any idea about my own disease.)My dearest friend now is in the last stages of emphysema & will be leaving us soon. He's actually more active than I am & puts me to shame. But I just don't seem to care enough about my own life to get active.I have a TERRIBLE attitude. I'm really angry about being stuck w/an HMO that won't let me go to a Center for Excellence

hospital or even get a 2nd opinion outside of its own program doctors unless I pay. It DOESN'T EVEN HAVE a pulmonary rehab program! And my pulmodoc got upset w/my email questions & refused to answer except during appts that I have to co-pay. (BTW, I was finally able to get an appt for next Thurs.)I spend most of my time on the phone & computer fighting w/bureaucracies. It took 8 months to get my cell phone co. to finally admit it overcharged me & return the money. Meanwhile, it cut off my service & put me thru hell. I'm fighting with one credit card co. for refusing to cancel pmt. to another business that defrauded me, & I'm fighting w/another credit card co. that just raised my rate to 24.99%. I was paying 3.99% because I have really good credit & have never been late. (I think they've learned I'm on disability & figure I'm an easy touch now.) I can stop using the card, but that won't help me pay the

balance.I'm filling out form after form to apply for anything that might help me, but they take SO long. I don't leave the house much anymore except for medical & dental appts, to buy groceries or visit my dying friend.My dog & 2 cats all died last year of old age, which devastated me. (Lesson learned -- NEVER get all your pets around the same age.) I finally got a darling 6-yr-old cat a few months ago. She's the one bright spot in my life.There's a saying about how life w/o purpose has no value & that's how I feel. I got really excited about the PF book idea or even writing a letter to the AMA & volunteered to collect & edit information. But nobody sent me anything or even acknowledged my offer.I'm so sorry to just whine on & on, especially since physically, I still have it so much better than many of you. But it just doesn't seem like there's anything to look forward to except worse medical

problems -- no purpose, no reason to keep going.I know I deserve it if you guys give me hell, but I honestly don't think I could handle it unless you do it really gently. I burst into tears over just about everything these days.Cees, S CalifPF 10/08> >> > Hi, I'm new here and need to hear from others who feel as old as I do.> I'm only 43 but my body is about 20 years older. I've battled Hodgkin's> Lymphoma 7x since 1995 and am still in the fight. Now I have PF, am on> oxygen 24/7, use a bi-pap and get out of breath with any movement. I am> in a rehab program 3x a week and was told I have a week diaphragm too> due to being laid up after some stomach surgery, so I am going to try> singing lessons to help me breath differently. I am so tired from> breathing, it takes so much energy. I am in a support group for the> cancer and in private therapy for everything else. But when does your> quality of life take priority over trying endlessly to

beat all these> health issues? I have a king of a husband and a huge loving support> system but none of that can help me breath any better. Sorry for> complaining so soon, it's just so tough and I know someone out there has> walked in my shoes, I just need to know how do you keep on walking???> >>