Questions

[Guest guest]

This is Robyn. I have Lupus, Fibromyalgia, and Chronic Hep C. Last

week I went to get some bloodwork done, then visited a friend and on

the way home decided to get some groceries (against my better

judgement, as I was getting very fatigued). Half way through the

store I realized that I had pushed myelf too far. By the time I had

gotten all my groceries out of the cart, my whole back, neck and

arms had gone into severe muscle spasms. It felt like someone was

hitting me all over my body with a hammer. I was starting to panic.

I think FM can hit you anywhere all over your body, it does me-

bones, muscles, joints. I take a mild muscle relaxer (Robaxin)

everynight. It relaxes all my spasms and doesn't make me groggy in

the morning. Robyn

> > Hi Everyone,

> >

> > I have a question for all of you. I read that Lupus does not

affect

> > large muscle groups, like back, neck, etc.... I have terrible

neck,

> > shoulder, and lower back pain, and I am wondering if it is

because

> of

> > the lupus?

> >

> > Also, does anyone else have optic neuritis? Do you take

medication

> for

> > it, other than steroid meds? I am terribly frustrated with my

optic

> > neuritis, my neuro-opthamologist doesn't want to treat it

because it

> > doesn't affect my vision. But the pain is terrible!

> >

> > I am so new at this.... I am currently waiting for my dr to

call me

> > back with results from my urinalysis, it seems they found

> something! I

> > know from the last one that my protein, WBC and bacteria were

> high!

> >

> > Never a dull moment! Lots of hugs to everyone, and good wishes

for

> > pain-free (or at least pain-mild) days!

> >

> > Thanks everyone!

> >

> > Cheryl J in GA

[Guest guest]

This is Robyn. I have Lupus, Fibromyalgia, and Chronic Hep C. Last

week I went to get some bloodwork done, then visited a friend and on

the way home decided to get some groceries (against my better

judgement, as I was getting very fatigued). Half way through the

store I realized that I had pushed myelf too far. By the time I had

gotten all my groceries out of the cart, my whole back, neck and

arms had gone into severe muscle spasms. It felt like someone was

hitting me all over my body with a hammer. I was starting to panic.

I think FM can hit you anywhere all over your body, it does me-

bones, muscles, joints. I take a mild muscle relaxer (Robaxin)

everynight. It relaxes all my spasms and doesn't make me groggy in

the morning. Robyn

> > Hi Everyone,

> >

> > I have a question for all of you. I read that Lupus does not

affect

> > large muscle groups, like back, neck, etc.... I have terrible

neck,

> > shoulder, and lower back pain, and I am wondering if it is

because

> of

> > the lupus?

> >

> > Also, does anyone else have optic neuritis? Do you take

medication

> for

> > it, other than steroid meds? I am terribly frustrated with my

optic

> > neuritis, my neuro-opthamologist doesn't want to treat it

because it

> > doesn't affect my vision. But the pain is terrible!

> >

> > I am so new at this.... I am currently waiting for my dr to

call me

> > back with results from my urinalysis, it seems they found

> something! I

> > know from the last one that my protein, WBC and bacteria were

> high!

> >

> > Never a dull moment! Lots of hugs to everyone, and good wishes

for

> > pain-free (or at least pain-mild) days!

> >

> > Thanks everyone!

> >

> > Cheryl J in GA

[Guest guest]

This is Robyn. I have Lupus, Fibromyalgia, and Chronic Hep C. Last

week I went to get some bloodwork done, then visited a friend and on

the way home decided to get some groceries (against my better

judgement, as I was getting very fatigued). Half way through the

store I realized that I had pushed myelf too far. By the time I had

gotten all my groceries out of the cart, my whole back, neck and

arms had gone into severe muscle spasms. It felt like someone was

hitting me all over my body with a hammer. I was starting to panic.

I think FM can hit you anywhere all over your body, it does me-

bones, muscles, joints. I take a mild muscle relaxer (Robaxin)

everynight. It relaxes all my spasms and doesn't make me groggy in

the morning. Robyn

> > Hi Everyone,

> >

> > I have a question for all of you. I read that Lupus does not

affect

> > large muscle groups, like back, neck, etc.... I have terrible

neck,

> > shoulder, and lower back pain, and I am wondering if it is

because

> of

> > the lupus?

> >

> > Also, does anyone else have optic neuritis? Do you take

medication

> for

> > it, other than steroid meds? I am terribly frustrated with my

optic

> > neuritis, my neuro-opthamologist doesn't want to treat it

because it

> > doesn't affect my vision. But the pain is terrible!

> >

> > I am so new at this.... I am currently waiting for my dr to

call me

> > back with results from my urinalysis, it seems they found

> something! I

> > know from the last one that my protein, WBC and bacteria were

> high!

> >

> > Never a dull moment! Lots of hugs to everyone, and good wishes

for

> > pain-free (or at least pain-mild) days!

> >

> > Thanks everyone!

> >

> > Cheryl J in GA

[Guest guest]

I did get sick when I started Usro and I didn't want to take it, then I realized that if I took it with food I felt a little better, and now that I have been taking it for a couple months I am fine, it doesn't make me sick at all anymore. Hang in there, let your body get used to it. cjlackie wrote: I have a GI doctor and I was just diagnosed with PSC last week.....I am to have a liver biopsy next Wed. to see what stage I am at....When I asked the doctor if I

should be on a special diet he said no just a general diet.....what does everyone think of this.....seems like I should be on some kind of a diet....the only symtoms I have is a heavy weight in my liver area..... I have been told that I have a fatty liver because the bile is not flowing properly.....also I started Usro on Wed. and I got really sick from it the first few days.....today I feel alittle better after I take it but did anyone else get sick when they first started this.....I am on 300 mg tablets and I take 2 with breakfast, 1 around noon and 1 in the evening.....with food......I have found that milk seems to help to take it with....skimmed of course...any other suggestions? ty CJ

Never miss a thing. Make Yahoo your homepage.

[Guest guest]

I did get sick when I started Usro and I didn't want to take it, then I realized that if I took it with food I felt a little better, and now that I have been taking it for a couple months I am fine, it doesn't make me sick at all anymore. Hang in there, let your body get used to it. cjlackie wrote: I have a GI doctor and I was just diagnosed with PSC last week.....I am to have a liver biopsy next Wed. to see what stage I am at....When I asked the doctor if I

should be on a special diet he said no just a general diet.....what does everyone think of this.....seems like I should be on some kind of a diet....the only symtoms I have is a heavy weight in my liver area..... I have been told that I have a fatty liver because the bile is not flowing properly.....also I started Usro on Wed. and I got really sick from it the first few days.....today I feel alittle better after I take it but did anyone else get sick when they first started this.....I am on 300 mg tablets and I take 2 with breakfast, 1 around noon and 1 in the evening.....with food......I have found that milk seems to help to take it with....skimmed of course...any other suggestions? ty CJ

Never miss a thing. Make Yahoo your homepage.

[Guest guest]

I did get sick when I started Usro and I didn't want to take it, then I realized that if I took it with food I felt a little better, and now that I have been taking it for a couple months I am fine, it doesn't make me sick at all anymore. Hang in there, let your body get used to it. cjlackie wrote: I have a GI doctor and I was just diagnosed with PSC last week.....I am to have a liver biopsy next Wed. to see what stage I am at....When I asked the doctor if I

should be on a special diet he said no just a general diet.....what does everyone think of this.....seems like I should be on some kind of a diet....the only symtoms I have is a heavy weight in my liver area..... I have been told that I have a fatty liver because the bile is not flowing properly.....also I started Usro on Wed. and I got really sick from it the first few days.....today I feel alittle better after I take it but did anyone else get sick when they first started this.....I am on 300 mg tablets and I take 2 with breakfast, 1 around noon and 1 in the evening.....with food......I have found that milk seems to help to take it with....skimmed of course...any other suggestions? ty CJ

Never miss a thing. Make Yahoo your homepage.

[Guest guest]

CJ,

I was diagnosed with PSC in 1989, but didn't start URSO until 1999. I did not have any side effects to URSO, but others have said it made them feel sick and some have said it caused itching. Some, on high dose, have said it helps to work up too the high dose. I was also told I don't need to be on any special diet, but because it seems to make sense I try and keep my fat intake down. I also take supplements of fish oil (1000 mg) and vitamin D (1000 IU) twice a day. From reading posts from PSC support you will find we are not all the same. Many of us report many different levels of symptoms and effects of medicines. We will be praying for you. Keep the faith and the faith will keep you.

Ian (51) PSC 89

I have a GI doctor and I was just diagnosed with PSC last week.....I am to have a liver biopsy next Wed. to see what stage I am at....When I asked the doctor if I should be on a special diet he said no just a

general diet.....what does everyone think of this.....seems like I should be on some kind of a diet....the only symtoms I have is a heavy weight in my liver area..... I have been told that I have a fatty liver

because the bile is not flowing properly.....also I started Usro on Wed. and I got really sick from it the first few days.....today I feel alittle better after I take it but did anyone else get sick when they

first started this.....I am on 300 mg tablets and I take 2 with breakfast, 1 around noon and 1 in the evening.....with food......I have found that milk seems to help to take it with....skimmed of course...any other suggestions?

ty CJ -- Ian Cribb former P.Eng. (resigned in good standing)

[Guest guest]

CJ,

I was diagnosed with PSC in 1989, but didn't start URSO until 1999. I did not have any side effects to URSO, but others have said it made them feel sick and some have said it caused itching. Some, on high dose, have said it helps to work up too the high dose. I was also told I don't need to be on any special diet, but because it seems to make sense I try and keep my fat intake down. I also take supplements of fish oil (1000 mg) and vitamin D (1000 IU) twice a day. From reading posts from PSC support you will find we are not all the same. Many of us report many different levels of symptoms and effects of medicines. We will be praying for you. Keep the faith and the faith will keep you.

Ian (51) PSC 89

I have a GI doctor and I was just diagnosed with PSC last week.....I am to have a liver biopsy next Wed. to see what stage I am at....When I asked the doctor if I should be on a special diet he said no just a

general diet.....what does everyone think of this.....seems like I should be on some kind of a diet....the only symtoms I have is a heavy weight in my liver area..... I have been told that I have a fatty liver

because the bile is not flowing properly.....also I started Usro on Wed. and I got really sick from it the first few days.....today I feel alittle better after I take it but did anyone else get sick when they

first started this.....I am on 300 mg tablets and I take 2 with breakfast, 1 around noon and 1 in the evening.....with food......I have found that milk seems to help to take it with....skimmed of course...any other suggestions?

ty CJ -- Ian Cribb former P.Eng. (resigned in good standing)

[Guest guest]

any other suggestions?

>

> ty CJ

>

Hi CJ,

Did your doctor recommend the specific dosing schedule you're on for

the Urso, or is it something you've worked out on your own? I ask

because when I started my Urso, I started by also spreading out my

dose through the day; I became quite nauseous in the beginning from

the drug. After talking to my hep about it, he said it would be fine

(and easier!) to just take it all as one dose at night. Doing this

virtually eliminated the nausea for me.

I also take fish oil and vitamin D supplements, as well as a milk

thistle supplement. In the interest of full disclosure, my hep told

me he believed milk thistle was an expensive placebo (but had no

problem with me taking it), and I know that many heps do not tell

their patients to take it (there is a lack of good scientific

evidence for its use in chronic liver disease; good evidence for its

use in other types of liver disease). I did some research on milk

thistle on my own, and found that there is a complex called 'silybin

phosphatidylcholine' that has a higher level of bio-availability,

compared with traditional milk thistle seed preparations. I feel

that the milk thistle has helped me *tremendously* with the fatigue

of PSC, as well as helping to lift a perpetual black cloud that had

been plaguing me since about 6 months before my diagnosis. Two of

the brand names of the silybin phosphatidylcholine complex are Ultra

Thistle, and Maximum Milk Thistle, if you are interested. Placebo or

otherwise, I think it's helping me!

I'm glad you found us! This group has been invaluable for me.

Genevieve

UC 1983, J-Pouch 1999, PSC 2007

[Guest guest]

I have been taken off of Urso Forte for a 6 month trial. My

hepatologist seems to believe that Urso causes me to have too many

bouts of convulsive vomiting which necessitates that I be

hospitalized. I have to be put on IV rehydration and antibiotics when

these episodes occur. My daily dose of Urso Forte has been as high as

2000 mg per day (2 500 mg pills in the morning and 2 500 mg pills at

night).

This trial period of no Urso seems to have helped with my problem but

now I wonder will the lack of taking the drug hasten the long-term

complications of PSC. I already had a dominant stricture before I even

started taking Actigall in '05. We will just wait and see what happens.

Deb

UC 1993, PSC 2005, colectomy 2005, one fat and happy Golden Retriever

[Guest guest]

I have been taken off of Urso Forte for a 6 month trial. My

hepatologist seems to believe that Urso causes me to have too many

bouts of convulsive vomiting which necessitates that I be

hospitalized. I have to be put on IV rehydration and antibiotics when

these episodes occur. My daily dose of Urso Forte has been as high as

2000 mg per day (2 500 mg pills in the morning and 2 500 mg pills at

night).

This trial period of no Urso seems to have helped with my problem but

now I wonder will the lack of taking the drug hasten the long-term

complications of PSC. I already had a dominant stricture before I even

started taking Actigall in '05. We will just wait and see what happens.

Deb

UC 1993, PSC 2005, colectomy 2005, one fat and happy Golden Retriever

[Guest guest]

Hi CJ;

If the rash is on one side of the trunk, then it could be Shingles:

http://www.mayoclinic.com/health/shingles/DS00098

You should probably be seen by a doctor to rule this out, and to test

for other possibilities, such as ursodiol itself causing the rash. Some

of the reported 'minor' adverse effects of ursodiol are:

Pruritus, rash, urticaria, dry skin, sweating, hair thinning, nausea,

vomiting, dyspepsia, metallic taste, abdominal pain, biliary pain,

cholecystitis, diarrhoea, constipation, stomatitis, flatulence,

headache, fatigue, anxiety, depression, sleep disorder, arthralgia,

myalgia, back pain, cough, rhinitis.

http://www.medsafe.govt.nz/Profs/Datasheet/a/Actigallcap.htm

Best regards,

Dave

(father of (22); PSC 07/03; UC 08/03)

>

> I have been on Urso since March 4th and the last 3 or 4 days I have

> noticed a strange rash all over my trunk....not on arms or legs.....I

> called the doctor but he was not in so they told me to take benadryl

> every 6 hours which I did and then this morning I woke with even more

> rash.....I also started to notice that my finger tips were tender and

> this morning I am noticing they have little blister type things on

> them....Has anyone else experienced anything like this? Not sure

what

> to do, if I should go to first care and see a doctor or wait till

> tomorrow and see my own doctor...

>

> CJ

>

[Guest guest]

Hi CJ;

If the rash is on one side of the trunk, then it could be Shingles:

http://www.mayoclinic.com/health/shingles/DS00098

You should probably be seen by a doctor to rule this out, and to test

for other possibilities, such as ursodiol itself causing the rash. Some

of the reported 'minor' adverse effects of ursodiol are:

Pruritus, rash, urticaria, dry skin, sweating, hair thinning, nausea,

vomiting, dyspepsia, metallic taste, abdominal pain, biliary pain,

cholecystitis, diarrhoea, constipation, stomatitis, flatulence,

headache, fatigue, anxiety, depression, sleep disorder, arthralgia,

myalgia, back pain, cough, rhinitis.

http://www.medsafe.govt.nz/Profs/Datasheet/a/Actigallcap.htm

Best regards,

Dave

(father of (22); PSC 07/03; UC 08/03)

>

> I have been on Urso since March 4th and the last 3 or 4 days I have

> noticed a strange rash all over my trunk....not on arms or legs.....I

> called the doctor but he was not in so they told me to take benadryl

> every 6 hours which I did and then this morning I woke with even more

> rash.....I also started to notice that my finger tips were tender and

> this morning I am noticing they have little blister type things on

> them....Has anyone else experienced anything like this? Not sure

what

> to do, if I should go to first care and see a doctor or wait till

> tomorrow and see my own doctor...

>

> CJ

>

[Guest guest]

Thanks Dave for your response....the rash is not on one side of the

trunk...it is evenly spread around my chest and lower

abdomin...strange rash too...round red spots....kinda look like flee

bites but have no animals....

> >

> > I have been on Urso since March 4th and the last 3 or 4 days I

have

> > noticed a strange rash all over my trunk....not on arms or

legs.....I

> > called the doctor but he was not in so they told me to take

benadryl

> > every 6 hours which I did and then this morning I woke with even

more

> > rash.....I also started to notice that my finger tips were tender

and

> > this morning I am noticing they have little blister type things

on

> > them....Has anyone else experienced anything like this? Not sure

> what

> > to do, if I should go to first care and see a doctor or wait till

> > tomorrow and see my own doctor...

> >

> > CJ

> >

>

[Guest guest]

Thanks Dave for your response....the rash is not on one side of the

trunk...it is evenly spread around my chest and lower

abdomin...strange rash too...round red spots....kinda look like flee

bites but have no animals....

> >

> > I have been on Urso since March 4th and the last 3 or 4 days I

have

> > noticed a strange rash all over my trunk....not on arms or

legs.....I

> > called the doctor but he was not in so they told me to take

benadryl

> > every 6 hours which I did and then this morning I woke with even

more

> > rash.....I also started to notice that my finger tips were tender

and

> > this morning I am noticing they have little blister type things

on

> > them....Has anyone else experienced anything like this? Not sure

> what

> > to do, if I should go to first care and see a doctor or wait till

> > tomorrow and see my own doctor...

> >

> > CJ

> >

>

[Guest guest]

I think it sounds like a rash from your new pills

unless of course you have also added something new to

your diet.I would wait until Monday to see my doc but

I wouldn't take more pills.

--- cjlackie clackie@...> wrote:

>

>

/a/

________________________________________________________________________________\

____

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[Guest guest]

Rashes are so different - and typically your doctor will want to actually look at it. Other option may be to stop meds for a few days and see if rash improves.

I would be concerned with the spread to your fingertips, discomfort and blisters. With that it might really be good to have MD visualize it.

Joanne H

(, Ca., mom of 17, UC/PSC 2-06)

-----Original Message-----From: [mailto: ]On Behalf Of cjlackieSent: Sunday, March 16, 2008 10:48 AMTo: Subject: Re: Questions

Thanks Dave for your response....the rash is not on one side of the trunk...

..

[Guest guest]

Hi CJ,

My son recently developed the same type of rash you are describing. He

had then on his arms. There were only about 4 of the red blister type

things. I had the school nurse and his ped. look at them and they both

thought they were flea bites. I dont think they were flea bites, but

they went away on their own and have not returned. Mystery rash...

, mother of Miles, 7 yr, UC, PSC

I also started to notice that my finger tips were tender and

> this morning I am noticing they have little blister type things on

> them....Has anyone else experienced anything like this? Not sure

what

> to do, if I should go to first care and see a doctor or wait till

> tomorrow and see my own doctor...

>

> CJ

>

[Guest guest]

Hi CJ,

My son recently developed the same type of rash you are describing. He

had then on his arms. There were only about 4 of the red blister type

things. I had the school nurse and his ped. look at them and they both

thought they were flea bites. I dont think they were flea bites, but

they went away on their own and have not returned. Mystery rash...

, mother of Miles, 7 yr, UC, PSC

I also started to notice that my finger tips were tender and

> this morning I am noticing they have little blister type things on

> them....Has anyone else experienced anything like this? Not sure

what

> to do, if I should go to first care and see a doctor or wait till

> tomorrow and see my own doctor...

>

> CJ

>

[Guest guest]

You've never explicitly stated whether you have UC (- I think, although you see

a GI?), but you might want to take a look at

http://www.ccfa.org/info/about/complications/skin. It's a list of common (and

not so common) extraintestinal manifestations of UC/Crohn's. None of them sound

exactly like what you're experiencing though.

Arne

---- cjlackie clackie@...> wrote:

=============

I have been on Urso since March 4th and the last 3 or 4 days I have

noticed a strange rash all over my trunk....not on arms or legs.....

[Guest guest]

Patti, I'm so sorry that you are going

through so much anguish lately. When we met

for lunch you seemed to be in a better place. It is extremely

frustrating not to be in

control of our own bodies. The pre -planning for every little sojourn

out of the house, the pre-planning just to spend a day

with family, the loads of time just to do ordinary chores like laundry

or taking a stupid shower!!!

The time it takes to do things that shouldn't even be counted in a

day...like filling and emptying the dishwasher, dryer or washer!!!

Or folding clothes or making the bed..I now even count these things as

activities!!!

Yes..Patti I know what you mean and we all do...but we just have to

keep doing stuff no matter what..the stuff gets done

, just not on the "old" time schedule"

Keep pushing Patti and I'll be there to give you an extra push when you

need it.

Stay warm..stay out of the snow that's coming later tonight and Tuesday!

Hope to see you again soon.

Z.

Z fibriotic NSIP/05

Z 65,

fibriotic NSIP/o5/PA

And “mild”

PH/10/07 and Reynaud’s too!!

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

friend.patti wrote:

hi

just realizing reading the posts today; it is going on 10 years when

the IPF showed up on xray. the changes that have occurred even

since the biopsy was done 7/06. the fatigue and at a point that is

getting harder to keep struggling to do things. just packing the car

with my bag let alone try and carry oxygen out. i say that laying

in bed now as too tiring to think to push to go out. I chuckle

thinking how strange things are and how others have no idea the

struggles every day and every min. making decisions to do things and

then to push where WE think we need to push harder.. Sorry, getting

more and more frustrated and i am just ending an infection and an

exacerbation of ipf.. this weather is not helping at all. i like

everyone am just soooooo tired of not being able to just pick up and

run.. and it takes tooo long to get ready. sorry, just have been

having a rough time.. And then to hear I LOOK GOOD>> when i don't

feel so good.. and too healthy for a lung. Am on the waiting list

but still too well..

Decided that i need to start taking better care of myself and

redirect where i push harder. Eating,spiritually, exercising, using

my oxygen as i am suppose. And yes i am thankfulf for my meds but

taking 30 a day is just too frustrating especially i am one that

never took any meds... oh, well another journey to travel and who

knows maybe the mountains wont be so steep, Patti ipf 7'06, NJ

> >

> > Bev, My heart just breaks for you. First and most

important...

You

> > are not going to die tomorrow..

> > You can still live a full life--just a little different. For

your

> > boat. take plenty of tanks, long hoses.

> > As long as you can secure the tanks I don't see why you

couldn't

do

> > anything you want.

> >

> > The University would be THE place you want to go. IPF is a

disease

> > that needs a specialist in

> > Pulmonary Fibrosis. There are many (over 200) different

fibrosis' .

> > There isn't a treatment for IPF. Some give prednisone and or

imuran

> > but they haven't been proven to help with this monster. The

side

> > effects were not worth it for me. I wish I had known then

what I

know

> > now.

> >

> > I don't think you should worry about funerals right now. You

have a

> > lot of living to do. GO GIRL, LIVE.

> > Here on this board we try to help each other with tips and

> > encouragement. Anything you question ASK.

> > There are no dumb questions. Someone will always be here to

help.

> >

> > I also have IPF. I was diagnosed almost five years ago. June

of

2004.

> > Don't feel your alone in this fight.

> > God Bless you with strength and peace.

> >

> > Love & Prayers, Peggy

> > Florida, IPF/UIP 2004

> >

> > "I believe that friends are quiet angels who lift us to our

feet,

> > when our wings have trouble remembering how to fly."

> >

> >

>

> Thank you. Your post does make me feel better. Where I live the

> doctors are bad. I am going to a pulmonary specialist in

Spokane,wa.

> but the local doctors here failed to diagnose this with an earlier

> chest x-ray When I got bad enough to be put in the local hospital

they

> said that it was curable and they thought that they had me cured.

> Shows how much they know. Last year one of them failed to diagnose

a

> perforated appendix. I was within two days of dying when I went to

> another doctor and was sent to Spokane for emergency surgery. So my

> lungs are very bad now. I still intend to live as much as I can

for as

> long as I can. What about the portable concentrators? My doctor

said

> that I should ask my oxygen provider about an Inogen machine. I was

> told that I can't have one of those for home use. Medicare won't

pay

> for them. He said that they cost $6,000. They are 4 thousand on the

> internet. I thought that when I sell my house I might be able to

buy

> one. I'm also curious about disability. I don't know what the

> requirements are for that but I thought that I might get more help

> with medical expenses at least. I am just full of questions. Bev

>

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[Guest guest]

Patti, I'm so sorry that you are going

through so much anguish lately. When we met

for lunch you seemed to be in a better place. It is extremely

frustrating not to be in

control of our own bodies. The pre -planning for every little sojourn

out of the house, the pre-planning just to spend a day

with family, the loads of time just to do ordinary chores like laundry

or taking a stupid shower!!!

The time it takes to do things that shouldn't even be counted in a

day...like filling and emptying the dishwasher, dryer or washer!!!

Or folding clothes or making the bed..I now even count these things as

activities!!!

Yes..Patti I know what you mean and we all do...but we just have to

keep doing stuff no matter what..the stuff gets done

, just not on the "old" time schedule"

Keep pushing Patti and I'll be there to give you an extra push when you

need it.

Stay warm..stay out of the snow that's coming later tonight and Tuesday!

Hope to see you again soon.

Z.

Z fibriotic NSIP/05

Z 65,

fibriotic NSIP/o5/PA

And “mild”

PH/10/07 and Reynaud’s too!!

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

friend.patti wrote:

hi

just realizing reading the posts today; it is going on 10 years when

the IPF showed up on xray. the changes that have occurred even

since the biopsy was done 7/06. the fatigue and at a point that is

getting harder to keep struggling to do things. just packing the car

with my bag let alone try and carry oxygen out. i say that laying

in bed now as too tiring to think to push to go out. I chuckle

thinking how strange things are and how others have no idea the

struggles every day and every min. making decisions to do things and

then to push where WE think we need to push harder.. Sorry, getting

more and more frustrated and i am just ending an infection and an

exacerbation of ipf.. this weather is not helping at all. i like

everyone am just soooooo tired of not being able to just pick up and

run.. and it takes tooo long to get ready. sorry, just have been

having a rough time.. And then to hear I LOOK GOOD>> when i don't

feel so good.. and too healthy for a lung. Am on the waiting list

but still too well..

Decided that i need to start taking better care of myself and

redirect where i push harder. Eating,spiritually, exercising, using

my oxygen as i am suppose. And yes i am thankfulf for my meds but

taking 30 a day is just too frustrating especially i am one that

never took any meds... oh, well another journey to travel and who

knows maybe the mountains wont be so steep, Patti ipf 7'06, NJ

> >

> > Bev, My heart just breaks for you. First and most

important...

You

> > are not going to die tomorrow..

> > You can still live a full life--just a little different. For

your

> > boat. take plenty of tanks, long hoses.

> > As long as you can secure the tanks I don't see why you

couldn't

do

> > anything you want.

> >

> > The University would be THE place you want to go. IPF is a

disease

> > that needs a specialist in

> > Pulmonary Fibrosis. There are many (over 200) different

fibrosis' .

> > There isn't a treatment for IPF. Some give prednisone and or

imuran

> > but they haven't been proven to help with this monster. The

side

> > effects were not worth it for me. I wish I had known then

what I

know

> > now.

> >

> > I don't think you should worry about funerals right now. You

have a

> > lot of living to do. GO GIRL, LIVE.

> > Here on this board we try to help each other with tips and

> > encouragement. Anything you question ASK.

> > There are no dumb questions. Someone will always be here to

help.

> >

> > I also have IPF. I was diagnosed almost five years ago. June

of

2004.

> > Don't feel your alone in this fight.

> > God Bless you with strength and peace.

> >

> > Love & Prayers, Peggy

> > Florida, IPF/UIP 2004

> >

> > "I believe that friends are quiet angels who lift us to our

feet,

> > when our wings have trouble remembering how to fly."

> >

> >

>

> Thank you. Your post does make me feel better. Where I live the

> doctors are bad. I am going to a pulmonary specialist in

Spokane,wa.

> but the local doctors here failed to diagnose this with an earlier

> chest x-ray When I got bad enough to be put in the local hospital

they

> said that it was curable and they thought that they had me cured.

> Shows how much they know. Last year one of them failed to diagnose

a

> perforated appendix. I was within two days of dying when I went to

> another doctor and was sent to Spokane for emergency surgery. So my

> lungs are very bad now. I still intend to live as much as I can

for as

> long as I can. What about the portable concentrators? My doctor

said

> that I should ask my oxygen provider about an Inogen machine. I was

> told that I can't have one of those for home use. Medicare won't

pay

> for them. He said that they cost $6,000. They are 4 thousand on the

> internet. I thought that when I sell my house I might be able to

buy

> one. I'm also curious about disability. I don't know what the

> requirements are for that but I thought that I might get more help

> with medical expenses at least. I am just full of questions. Bev

>

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[Guest guest]

Patti...I can say I know how you feel and somedays, for me, it's worse than others. Those are the days I stay home in 'jammies. I simply do not have the "fight" in me as I did a few years back.

Wish I had some magic elixir I could recommend...hell I can't even have a stiff drink w so many meds! :>)

Speaking of which, 30 a day does sound like a bunch.

Let's just do today's stuff today and we'll worry about tomorrow's stuff tomorrow...how's that?

Love,

MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

Re: questions

hijust realizing reading the posts today; it is going on 10 years when the IPF showed up on xray. the changes that have occurred even since the biopsy was done 7/06. the fatigue and at a point that is getting harder to keep struggling to do things. just packing the car with my bag let alone try and carry oxygen out. i say that laying in bed now as too tiring to think to push to go out. I chuckle thinking how strange things are and how others have no idea the struggles every day and every min. making decisions to do things and then to push where WE think we need to push harder.. Sorry, getting more and more frustrated and i am just ending an infection and an exacerbation of ipf.. this weather is not helping at all. i like everyone am just soooooo tired of not being able to just pick up and run.. and it takes tooo long to get ready. sorry, just have been having a rough time.. And then to hear I LOOK GOOD>> when i don't feel so good.. and too healthy for a lung. Am on the waiting list but still too well..Decided that i need to start taking better care of myself and redirect where i push harder. Eating,spiritually, exercising, using my oxygen as i am suppose. And yes i am thankfulf for my meds but taking 30 a day is just too frustrating especially i am one that never took any meds... oh, well another journey to travel and who knows maybe the mountains wont be so steep, Patti ipf 7'06, NJ> >> > Bev, My heart just breaks for you. First and most important... You > > are not going to die tomorrow..> > You can still live a full life--just a little different. For your > > boat. take plenty of tanks, long hoses.> > As long as you can secure the tanks I don't see why you couldn't do > > anything you want.> > > > The University would be THE place you want to go. IPF is a disease > > that needs a specialist in> > Pulmonary Fibrosis. There are many (over 200) different fibrosis' .> > There isn't a treatment for IPF. Some give prednisone and or imuran > > but they haven't been proven to help with this monster. The side > > effects were not worth it for me. I wish I had known then what I know > > now.> > > > I don't think you should worry about funerals right now. You have a > > lot of living to do. GO GIRL, LIVE.> > Here on this board we try to help each other with tips and > > encouragement. Anything you question ASK.> > There are no dumb questions. Someone will always be here to help.> > > > I also have IPF. I was diagnosed almost five years ago. June of 2004. > > Don't feel your alone in this fight.> > God Bless you with strength and peace.> > > > Love & Prayers, Peggy> > Florida, IPF/UIP 2004> > > > "I believe that friends are quiet angels who lift us to our feet,> > when our wings have trouble remembering how to fly."> > > > > > Thank you. Your post does make me feel better. Where I live the> doctors are bad. I am going to a pulmonary specialist in Spokane,wa.> but the local doctors here failed to diagnose this with an earlier> chest x-ray When I got bad enough to be put in the local hospital they> said that it was curable and they thought that they had me cured.> Shows how much they know. Last year one of them failed to diagnose a> perforated appendix. I was within two days of dying when I went to> another doctor and was sent to Spokane for emergency surgery. So my> lungs are very bad now. I still intend to live as much as I can for as> long as I can. What about the portable concentrators? My doctor said> that I should ask my oxygen provider about an Inogen machine. I was> told that I can't have one of those for home use. Medicare won't pay> for them. He said that they cost $6,000. They are 4 thousand on the> internet. I thought that when I sell my house I might be able to buy> one. I'm also curious about disability. I don't know what the> requirements are for that but I thought that I might get more help> with medical expenses at least. I am just full of questions. Bev>

[Guest guest]

margaret

i hear you, bending and goodness gracious to get down on the floor

and get up without help.. oh, ya. I am woman (helen reddy) but...

we will figure it out and yes i hear Beth chuckling at me.. yes

i am getting ready to say " uncle " . but this too shall pass.. so

sorry,you are experiencing this. i know Joyce and were sharing

different ways for me to save energy.. simple things we don't think

of .. doing dishes/cooking sitting on a stool. the umbrella stroller

to be able to walk the mall etc.. , i guess we need to explore how

we can get off the ground when we finally get down there and need to

get up.. ha ha.. have a great support group with lots of ideas. keep

in touch. patti ipf 7'06,nj

> > >

> > > Bev, My heart just breaks for you. First and most important...

> You

> > > are not going to die tomorrow..

> > > You can still live a full life--just a little different. For

> your

> > > boat. take plenty of tanks, long hoses.

> > > As long as you can secure the tanks I don't see why you

couldn't

> do

> > > anything you want.

> > >

> > > The University would be THE place you want to go. IPF is a

> disease

> > > that needs a specialist in

> > > Pulmonary Fibrosis. There are many (over 200) different

> fibrosis' .

> > > There isn't a treatment for IPF. Some give prednisone and or

> imuran

> > > but they haven't been proven to help with this monster. The

side

> > > effects were not worth it for me. I wish I had known then what

I

> know

> > > now.

> > >

> > > I don't think you should worry about funerals right now. You

> have a

> > > lot of living to do. GO GIRL, LIVE.

> > > Here on this board we try to help each other with tips and

> > > encouragement. Anything you question ASK.

> > > There are no dumb questions. Someone will always be here to

help.

> > >

> > > I also have IPF. I was diagnosed almost five years ago. June

of

> 2004.

> > > Don't feel your alone in this fight.

> > > God Bless you with strength and peace.

> > >

> > > Love & Prayers, Peggy

> > > Florida, IPF/UIP 2004

> > >

> > > " I believe that friends are quiet angels who lift us to our

feet,

> > > when our wings have trouble remembering how to fly. "

> > >

> > >

> >

> > Thank you. Your post does make me feel better. Where I live the

> > doctors are bad. I am going to a pulmonary specialist in

> Spokane,wa.

> > but the local doctors here failed to diagnose this with an

earlier

> > chest x-ray When I got bad enough to be put in the local

hospital

> they

> > said that it was curable and they thought that they had me cured.

> > Shows how much they know. Last year one of them failed to

diagnose

> a

> > perforated appendix. I was within two days of dying when I went

to

> > another doctor and was sent to Spokane for emergency surgery. So

my

> > lungs are very bad now. I still intend to live as much as I can

> for as

> > long as I can. What about the portable concentrators? My doctor

> said

> > that I should ask my oxygen provider about an Inogen machine. I

was

> > told that I can't have one of those for home use. Medicare won't

> pay

> > for them. He said that they cost $6,000. They are 4 thousand on

the

> > internet. I thought that when I sell my house I might be able to

> buy

> > one. I'm also curious about disability. I don't know what the

> > requirements are for that but I thought that I might get more

help

> > with medical expenses at least. I am just full of questions. Bev

> >

>

[Guest guest]

margaret

i hear you, bending and goodness gracious to get down on the floor

and get up without help.. oh, ya. I am woman (helen reddy) but...

we will figure it out and yes i hear Beth chuckling at me.. yes

i am getting ready to say " uncle " . but this too shall pass.. so

sorry,you are experiencing this. i know Joyce and were sharing

different ways for me to save energy.. simple things we don't think

of .. doing dishes/cooking sitting on a stool. the umbrella stroller

to be able to walk the mall etc.. , i guess we need to explore how

we can get off the ground when we finally get down there and need to

get up.. ha ha.. have a great support group with lots of ideas. keep

in touch. patti ipf 7'06,nj

> > >

> > > Bev, My heart just breaks for you. First and most important...

> You

> > > are not going to die tomorrow..

> > > You can still live a full life--just a little different. For

> your

> > > boat. take plenty of tanks, long hoses.

> > > As long as you can secure the tanks I don't see why you

couldn't

> do

> > > anything you want.

> > >

> > > The University would be THE place you want to go. IPF is a

> disease

> > > that needs a specialist in

> > > Pulmonary Fibrosis. There are many (over 200) different

> fibrosis' .

> > > There isn't a treatment for IPF. Some give prednisone and or

> imuran

> > > but they haven't been proven to help with this monster. The

side

> > > effects were not worth it for me. I wish I had known then what

I

> know

> > > now.

> > >

> > > I don't think you should worry about funerals right now. You

> have a

> > > lot of living to do. GO GIRL, LIVE.

> > > Here on this board we try to help each other with tips and

> > > encouragement. Anything you question ASK.

> > > There are no dumb questions. Someone will always be here to

help.

> > >

> > > I also have IPF. I was diagnosed almost five years ago. June

of

> 2004.

> > > Don't feel your alone in this fight.

> > > God Bless you with strength and peace.

> > >

> > > Love & Prayers, Peggy

> > > Florida, IPF/UIP 2004

> > >

> > > " I believe that friends are quiet angels who lift us to our

feet,

> > > when our wings have trouble remembering how to fly. "

> > >

> > >

> >

> > Thank you. Your post does make me feel better. Where I live the

> > doctors are bad. I am going to a pulmonary specialist in

> Spokane,wa.

> > but the local doctors here failed to diagnose this with an

earlier

> > chest x-ray When I got bad enough to be put in the local

hospital

> they

> > said that it was curable and they thought that they had me cured.

> > Shows how much they know. Last year one of them failed to

diagnose

> a

> > perforated appendix. I was within two days of dying when I went

to

> > another doctor and was sent to Spokane for emergency surgery. So

my

> > lungs are very bad now. I still intend to live as much as I can

> for as

> > long as I can. What about the portable concentrators? My doctor

> said

> > that I should ask my oxygen provider about an Inogen machine. I

was

> > told that I can't have one of those for home use. Medicare won't

> pay

> > for them. He said that they cost $6,000. They are 4 thousand on

the

> > internet. I thought that when I sell my house I might be able to

> buy

> > one. I'm also curious about disability. I don't know what the

> > requirements are for that but I thought that I might get more

help

> > with medical expenses at least. I am just full of questions. Bev

> >

>