Re: Re: PF from radiation

[Guest guest]

Dawn, Welcome fellow

Pennsylvanian!!!

There are several of us from PA.

You certainly have been battling many medical problems.

Where are you? I'm in a suburb of Philadelphia and I am 65.

A lot older than you but "I Get It"..the Shortness of Breath

is very difficult to deal with constantly...I

sometimes feel that way even on the 3 lpm O2.

The docs tell me that the lungs stiffen over time and it feels as if

I'm SOB

but the saturation is OK.

Welcome again, sorry you needed us but you've come to the right group.

Z fibriotic NSIP/05

Z 65, fibriotic NSIP/05/PA

And

“mild” PH/10/07

No,

NSIP was not self-inflicted…I never smoked!

Potter,

reader,carousel lover and MomMom to Darah and Sara

“I’m

gonna be iron like a lion in Zion” Bob Marley

Vinca

Minor-periwinkle is my flower

Dawn wrote:

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]

Hi Dawn from another Pa. Person. I am in Ga. But born in Titusville, Pa. Moved to Ga. In 1978. I am 61 but as others I "GET IT". Hope you can meet some of us as the best people meet here first then assemble as we did in Chattanooga. It was my first and hope it won't be my last. Keep the faith as we all do and stay tuned to learn a lot. Between Dr. Bruce, Beth , LeAnne, and Beth, and Peggy they are well informed and helpful.

Let's roll,

Joe

   JOE & JOANIE LAMENSKIE

IPF JAN. 2008

-- Re: Re: PF from radiation

Dawn, Welcome fellow Pennsylvanian!!!There are several of us from PA.You certainly have been battling many medical problems.Where are you? I'm in a suburb of Philadelphia and I am 65.A lot older than you but "I Get It"..the Shortness of Breathis very difficult to deal with constantly...I sometimes feel that way even on the 3 lpm O2.The docs tell me that the lungs stiffen over time and it feels as if I'm SOBbut the saturation is OK.Welcome again, sorry you needed us but you've come to the right group.

Z 65, fibriotic NSIP/05/PA

And “mild†PH/10/07

No, NSIP was not self-inflicted…I never smoked!

Potter, reader,carousel lover and MomMom to Darah and Sara

“I’m gonna be iron like a lion in Zion†Bob Marley

Vinca Minor-periwinkle is my flower

Dawn wrote:

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]

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.

Subject: Re: PF from radiationTo: Breathe-Support Date: 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???> >>

[Guest guest]

Dear Cees,

Just know that I feel your pain. You are in the eye of the storm right now and its okay to vent, feel angry, and sad. You've had a lot thrown at you all at once. I just want to be able to deal with one issue, tragedy, or change at a time, but the problems never come one-by-one, they come in this huge package to try and throw us overboard. And then to top it off all we can do is hang onto the railing because we don't have another hand to grab onto. I live alone too and it makes it tough when we need help or just some sympathy or a hug.

Just know that I am here for you as well as everyone else in this group; consider yourself hugged today! C_53_Familial IPF_5/09Washington

To: Breathe-Support Sent: Mon, November 9, 2009 12:48:49 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???> >>