Re: PF from radiation

November 8, 2009

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

To: Breathe-Support Sent: 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???

November 8, 2009

Dawn

Hard to relate to your specific conditions and history. I would say

priority number one is make sure oxygen levels are maintained adequately

at all times, including sleep. I don't know what liter flow you're on at

different times, but do hope you have an oximeter you're monitoring

with. Certainly your rehab should help you.

Now, how to turn all that into quality. Quality of life starts with

quality time with those important to us. See those you haven't seen

enough. Call those whose voices you need to hear. Make a list of things

you'd really like to do within your capabilities and make sure you do

them. Planned pleasant activities are very important regardless of how

simple they are. A bubble bath while listening to your favorite music

could be one or a trip to see friends. Go places that have scooter

rentals too. But make lists of things you know you'll enjoy and make

sure you check some off. Just as you schedule doctor's appointments,

schedule pleasure.

The other thing I have done is geared any discretionary spending I ever

am able to afford toward quality of life, today and future. Will it make

my life easier? There are many things I'd like to have but I sit back

and think its nice but it isn't going to really improve the quality of

my life beyond the moment.

I've been through the constant doctors routines too. I try to schedule a

lot in August when its unfit weather here for anything else. I saw 17

doctors last year in total and will see about 12 this year. (August 2008

I had a total of 19 medical appointments). But I do plan them in such a

way not to be overwhelmed. And, I plan around things I want to do rather

than sacrifice.

So, making some lists sure helps me....we work hard at medical care.

Well, we need to work as hard to insure our pleasure. Sometimes its a

challenge to come up with things we really want to do and can do. Maybe

the start is just to quickly come up with one for the coming week.

Sometimes we have to make sure we have those things out there we really

can look forward to.

>

> 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???

>

November 8, 2009

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 toÂ sayÂ except that you are not alone. There are

many of us hereÂ who have multiple diagnosisÂ 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 andÂ also have dermatomysitis. I've not had to battle cancer and can

only imagine what youÂ have gone through.Â

>

> I do know aboutÂ the overwhelming fatigue that comes fromÂ just trying to

breathe. To do something that mostÂ 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 aÂ really

interesting approach. I'm glad to hearÂ you are in a rehab program. Is it

pulmonary rehab?

>

> I wish thatÂ I had a magic wand andÂ 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

>

> ________________________________

>

> To: Breathe-Support

> 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???

>

November 8, 2009

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???

> >

>

November 9, 2009

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 Calif

PF 10/08