Re: 13 Centers MARY BETH

[Guest guest]

Thank you Beth, I will look at the hospitals. It is a good thing always to include options. My going to the Hospital is a very difficult thing. Going to the Grocer is a drama. I am always running from people. They run from me as well only not for the same reasons. Once I was in the grocery store and this man told his son to move the "Crazy Lady" was coming threw. I had not been able to enter a hospital setting in quite sometime. The last time I went I almost passed out in 10 minutes. I had to stop going until I got the right equipment to go back.

This week was my first time back to the hospital with for his appointment. His doctor asked all kinds of questions about the masks. She sent him to the pulmonologist to see if he was like me, with lung disease, he has been having chest pain and difficulty breathing as well.

Had I passed out they would have killed me. Someone would have picked me up and taken me further into the hospital which for me is deadly, when I actually needed was to exit the building immediately. Good thing I barely made it out. My legs want to give in when this happens, so I literally dragged myself out of there.

Still looking for others to tell me about their experiences with different oxygen systems. I am also thinking of going to look at a few at the nearest medical supply store. Figure out how to put something together. I now have a ceramic oxygen mask and tygon tubing. Next is the equipment. My family has been sensing me stuff. Mainly my Mom and my sister who is 1year and 1 day older than me. We used to play twins in High School.

The rest do not want to be bothered. This condition anialates you because people find it too hard to deal with. Sothey disappear. My mom is trying to get here. Finances is the problem. While sending me stuff and trying to get here on SS is impossible. The others won't help. Please look for a post I am asking for info.

God Bless !!

dragonflymcs

Mayleen 02/07 ILD / MCS/ Fibro/ RADS/ TMJD/ AR +18

To dragonfly> > > I've been waiting for you to post to us about the disease we have in common and how you are coping with whatever problems you may be having or already solved.> I'd like to hear to hear more about you Mayleen. I'm feeling overwhelmed with so many other things you post that I don't read all your posts any longer. I don't want to be

rude to you if you are needing us.> I know you are dealing with a lot because of your living conditions and other health problems for which I have no suggestions.> How are you dealing with a disease we CAN help with?> > Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR.> Don't fret about tomorrow, God is already there!>

[Guest guest]

Mayleen,

I'm just curious about something. Are you certain that you need supplementary oxygen? I know you have limited ability to have testing done etc but I'm just wondering if you've maybe got the cart before the horse? Do you know what your oxygen saturations are?

Beth

Age 48 Fibrotic NSIP 06/06

Change everything. Love and Forgive

To dragonfly> > > I've been waiting for you to post to us about the disease we have in common and how you are coping with whatever problems you may be having or already solved.> I'd like to hear to hear more about you Mayleen. I'm feeling overwhelmed with so many other things you post that I don't read all your posts any longer. I don't want to be

rude to you if you are needing us.> I know you are dealing with a lot because of your living conditions and other health problems for which I have no suggestions.> How are you dealing with a disease we CAN help with?> > Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR.> Don't fret about tomorrow, God is already there!>

[Guest guest]

Mayleen....it would be hard for us to send you info. on whatever O2 system we use because it's specifically for IPF or related diseases. Apparently you don't need O2 for ILD but other issues. What we use may not apply to your issues.

Don't you have a dr who is prescribing what you need?

Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there!

To dragonfly> > > I've been waiting for you to post to us about the disease we have in common and how you are coping with whatever problems you may be having or already solved.> I'd like to hear to hear more about you Mayleen. I'm feeling overwhelmed with so many other things you post that I don't read all your posts any longer. I don't want to be rude to you if you are needing us.> I know you are dealing with a lot because of your living conditions and other health problems for which I have no suggestions.> How are you dealing with a disease we CAN help with?> > Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR.> Don't fret about tomorrow, God is already there!>

[Guest guest]

Beth, Yes I am sure I need it. It is also part of the treatment for the other. Fresh oxygen. Even if they do not have a lung disease like me. They all try to get oxygen tanks. It help with the chemical exposures, with exposure to car exhaust, and when traveling like me because there is no where to stay for us. Only for those who had the time to get to a good place, unlike us who lost our homes to disaster and insurance, we were left with nothing to move foward wth this disease. The air outside for me is poison basically. It poisones me little by little until my organs shut down. Reason for the oxygen. Because of the ILD I need it more than most than anyone. My mask does not supply oxygen, and I canot breathe regular air only filtered air.

I react to air at .0001% which leaves no room for error. When we encounter the environment, we are like sponges. When we breathe we inhale evrything in the air. It is absorbed threw our respiratory system, our eyes and our skin. The largest organ you have is your skin. Once you breathe threw anyone of these you are exposed to the contaminants in them. Which then travel to your brain and other organs. Our problem is that we had our immnue systems so damaged that we could no longer process these. They are now accumulating in our fat and organs until you suffer organ failure which can be fatal. When we absorb these we have multiple organ involvement, including the brain. Everyone reacts differently to the exposure. I my case most of my reactions are immediate, so I either have difficulty breathing with almost all, my face swells within seconds, I now cover my skin because I suffered a skin exposure

and now my skin is reactive, I get rashes that look like blisters. Thank to the cities utilities department I have this too. I get lumps in my muscles, I get loss of concentration, coordination, weakness in my limbs and more. Once exposed I cannot elliminate these. The only treatment really is avoidance. But how can I avoid what you use? It makes it virtually imposssble. There in comes the isolation, to protect yourself from what is making you sick you must isolate yourself.

I only have 2 choices filtered air or oxygen. If I do not have one or the other I cannot make it. No regular air for me. If my house blows and I cannot plug in my machines, I must have oxygen.

Hope this helps. If not let me know i have info. Lots of it. This explains a little.

http://www.emagazine.com/view/?1003

God Bless !!

dragonflymcs

Mayleen 02/07 ILD / MCS/ Fibro/ RADS/ TMJD/ AR +18

To dragonfly> > > I've been waiting for you to post to us about the disease we have in common and how you are coping with whatever problems you may be having or already solved.> I'd like to hear to hear more about you Mayleen. I'm feeling overwhelmed with so many other things you post that I don't read all your posts any longer. I don't want to be

rude to you if you are needing us.> I know you are dealing with a lot because of your living conditions and other health problems for which I have no suggestions.> How are you dealing with a disease we CAN help with?> > Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR.> Don't fret about tomorrow, God is already there!>

[Guest guest]

Beth,

No you see you are providing me with tools I can use to figure out both. I know I have been exhausted lately, and I do believe my o2 is low. Reason why I made the appointment. There is no book written for this, no go to person. I have to figure this out for both diseases and for my situation which is beyond barerable.

I am asking to know how your systems work for you, which work better in your experience, which are better for travel in your experience, later I have to pick what is going to work for me in my situation. You are only giving me tools to work with. I cannot ask a tech how the system works for him? He does not use it. On the other hand mostly everyone here has that experience with different equipment.

Like when someone posted about the helios freezing up. That was very helpful. Florida is humid, helios freezes, someone else posted how to prevent that. That is helpful. All those tools of knowledge give me a platform to work with. My situation is unique to me, all I want are tools. I am positive I will get 02. There is no way around that. For both conditions I will need it. I need to figure out how to work with this unique situation, both disease and housing situation are affected by this.

God Bless !!

dragonflymcs

Mayleen 02/07 ILD / MCS/ Fibro/ RADS/ TMJD/ AR +18

To dragonfly> > > I've been waiting for you to post to us about the disease we have in common and how you are coping with whatever problems you may be having or already solved.> I'd like to hear to hear more about you Mayleen. I'm feeling overwhelmed with so many other things you post that I don't read all your posts any longer. I don't want to be

rude to you if you are needing us.> I know you are dealing with a lot because of your living conditions and other health problems for which I have no suggestions.> How are you dealing with a disease we CAN help with?> > Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR.> Don't fret about tomorrow, God is already there!>

[Guest guest]

Mayleen...I can understand the precautions you must take with the MCS. I repeat to you, I'm just not that knowledgeable about any of it.

What you want to know about O2, go online and research. Then you can zero in on just what you want. Again, I'm only focused on our IPf/related disease.

Why don't you take your plight to the newspaper and/or TV? If you are not getting attention to life threatening situations, that will bring a focus on what you need and the deplorable conditions in which you live.

Good luck.

Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there!

To dragonfly> > > I've been waiting for you to post to us about the disease we have in common and how you are coping with whatever problems you may be having or already solved.> I'd like to hear to hear more about you Mayleen. I'm feeling overwhelmed with so many other things you post that I don't read all your posts any longer. I don't want to be rude to you if you are needing us.> I know you are dealing with a lot because of your living conditions and other health problems for which I have no suggestions.> How are you dealing with a disease we CAN help with?> > Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR.> Don't fret about tomorrow, God is already there!>

[Guest guest]

Mama Sher, As with all diseases comes this part. Acceptance. I do not need you to know of MCS. I need info on ILD. Why I am here, like I said before you cannot help me with the other. Online research gives me no insight as to actual users of these systems. I already did that part. That is not what I need. The problem is you do not understand that. I do not blame you for not knowing of this, it is not yours to know of. In my MCS group, they suggested your group for that part of it because they do not have ILD. Like I said I belong nowhere. Can you just let it be and let me get what I need. That is how you can help me. I need feed back from users of these systems, not from a website. I have done that work already.

I do not need information on the system itself. On the quality of performance and trials and tribulations that come with them. That can only come from users of these systems.

You do not have to know anything about my other disease. I do. I just want feed back from users. Not an article, not a website , I want feedback from a human being that uses these that has the condition. The IDL not the MCS.

You are making feel like I am a burden to you! Unwanted, a bother, a pest, a nuciance. Why! I have IDL too, just because it is not like yours, because I am different? You made me feel unwanted the other day and made me cry, now you are doing it again. Why? Just because I am different? if you keep asking about the other that is why I keep bringing it up. You keep bringing it up, not I. I am giving you what you are talking about.

God Bless !!

dragonflymcs

Mayleen 02/07 ILD / MCS/ Fibro/ RADS/ TMJD/ AR +18

To dragonfly> > > I've been waiting for you to post to us about the disease we have in common and how you are coping with whatever problems you may be having or already solved.> I'd like to hear to hear more about you Mayleen. I'm feeling overwhelmed with so many other things you post that I don't read all your posts any longer. I don't want to be

rude to you if you are needing us.> I know you are dealing with a lot because of your living conditions and other health problems for which I have no suggestions.> How are you dealing with a disease we CAN help with?> > Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR.> Don't fret about tomorrow, God is already there!>

[Guest guest]

Mayleen....if you only want info on ILD then what specifically do you want to know about ILD? Not O2, but ILD.

The specifics you asked for are meaningless when it is about another person. Sharing is one thing but requesting a profile for a disease you say you have seems strange to me.

You "need feedback from users of systems"....are you referring to O2 systems? Again, sharing problems is one thing, building a profile for something you do not use, again, is strange to me.

First you "need feedback"....then you "do not need information on the system itself".

What bothers me Mayleen are your long, repetitive posts that say nothing about ILD or how YOU are affected by ILD.

We are all different on this board but we share one common denominator....IPF.

This board was started for people with IPF. Any strain. I would love to have you talk about our similarities and not so much about our differences. Yes, you are different by your MCS and all that goes with it. As well as your living conditions. I do not need to understand it, that is why I'm being so open with you. You talk at length about something I and I'm sure others, do not understand at all and with which we can't help you.

I'm extremely sorry for ALL your issues and your lack of help. However, I'd like to focus on our similarities not our differences........

Truly, it has nothing to do with accepting YOU. I simply think you belong on a board that is better suited for what you continuously write about.

I notice you aren't getting many answers. Perhaps others are as confused about you as I. I do wish you well. Truly I do.

Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there!

To dragonfly> > > I've been waiting for you to post to us about the disease we have in common and how you are coping with whatever problems you may be having or already solved.> I'd like to hear to hear more about you Mayleen. I'm feeling overwhelmed with so many other things you post that I don't read all your posts any longer. I don't want to be rude to you if you are needing us.> I know you are dealing with a lot because of your living conditions and other health problems for which I have no suggestions.> How are you dealing with a disease we CAN help with?> > Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR.> Don't fret about tomorrow, God is already there!>

[Guest guest]

SHER, My studies lead me to what is right for me, my questions lead me to what is right for me. I asked specifically how the different o2 systems work for others because that is how I am supposed to deal with it. Not the way people commonly deal which is what confuses you. All of you have Doctor's, therapists, rehab, nurses, hospitals, so on. I do not for a reason. They do not want to touch me. It scares the pants off them. Anything I get, any kind of equipment, food, etc. for any reason has to be scrutinized. It is what I have to do. Must do. This is the approach I must take. The least traveled road. Everyone here is confused because it is not common to do things in this manner. However, I am not looking for a diagnosis, I am not looking for any of that.

I can read on the internet all day medical articles. It does not help me. I understand all the technical stuff. It does not help me. If you were me, you could understand. However you are not, therefore you cannot. This is the only place I have been made to feel like this. I have 2 other boards and need a third. This is the only place someone has made me feel so out of place. All the other say give me more information. Here, I feel out of place, a misfit, an alien. Please remove me. This is not what I need. Not at all!! I cry enough on my own, I do not need more grief. I have cried more since I joined here than ever.

I just do not fit here. My needs are beyond your comprehension and it makes me very overcome with grief. Not what I was looking for. I cry now more than on my own. I spend the day getting grief instead of support. I am not going to apologize for being different. The lack of understanding I have experienced is a torment not what I need. Just so you know, The MCS group told me this would happen. I guess they were right. We are misfits. Oh well. So be it.

Hope all of you can continue to give each other the support you need for your ILD. Good luck with your treatments to all !!!

God Bless !!

dragonflymcs

Mayleen 02/07 ILD / MCS/ Fibro/ RADS/ TMJD/ AR +18

To dragonfly> > > I've been waiting for you to post to us about the disease we have in common and how you are coping with whatever problems you may be having or already solved.> I'd like to hear to hear more about you Mayleen. I'm feeling overwhelmed with so many other things you post that I don't read all your posts any longer. I don't want to be

rude to you if you are needing us.> I know you are dealing with a lot because of your living conditions and other health problems for which I have no suggestions.> How are you dealing with a disease we CAN help with?> > Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR.> Don't fret about tomorrow, God is already there!>

[Guest guest]

Mayleen, From what you have posted it

seems as if your condition (MCS) has made

you like the "boy in the bubble".I don't know if you know about that

story. It was from the 60's.

The boy was basically born without a functioning immune system. He

lived his life without touch or contact

in a sort of plastic bubble. They even made a movie about him and his

family.

Obviously the ILD for you makes everything that much more complicated.

The lack of concern from the authorities seems really cruel.

What about a local politician who has some clout?

Your information aand links have been very interesting. I'm going to

read the

book excerpt" The Dispossessed" this week-end. I had no idea that this

condition

made people have to live in such extreme conditions.

BTW...I ordered the lace mask...I'll be styling at pottery in the

Fall.Thanks.

Z fibriotic NSIP/05

Z 64,

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

dragonflymcs wrote:

Beth, Yes I am sure I need

it. It is also part of the treatment for the other. Fresh oxygen. Even

if they do not have a lung disease like me. They all try to get oxygen

tanks. It help with the chemical exposures, with exposure to car

exhaust, and when traveling like me because there is no where to stay

for us. Only for those who had the time to get to a good place, unlike

us who lost our homes to disaster and insurance, we were left with

nothing to move foward wth this disease. The air outside for me is

poison basically. It poisones me little by little until my organs shut

down. Reason for the oxygen. Because of the ILD I need it more than

most than anyone. My mask does not supply oxygen, and I canot breathe

regular air only filtered air.

I react to air at .0001% which

leaves no room for error. When we encounter the environment, we are

like sponges. When we breathe we inhale evrything in the air. It is

absorbed threw our respiratory system, our eyes and our skin. The

largest organ you have is your skin. Once you breathe threw anyone of

these you are exposed to the contaminants in them. Which then travel to

your brain and other organs. Our problem is that we had our immnue

systems so damaged that we could no longer process these. They are now

accumulating in our fat and organs until you suffer organ failure which

can be fatal. When we absorb these we have multiple organ involvement,

including the brain. Everyone reacts differently to the exposure. I my

case most of my reactions are immediate, so I either have difficulty

breathing with almost all, my face swells within seconds, I now cover

my skin because I suffered a skin exposure and now my skin is reactive,

I get rashes that look like blisters. Thank to the cities utilities

department I have this too. I get lumps in my muscles, I get loss of

concentration, coordination, weakness in my limbs and more. Once

exposed I cannot elliminate these. The only treatment really is

avoidance. But how can I avoid what you use? It makes it virtually

imposssble. There in comes the isolation, to protect yourself from what

is making you sick you must isolate yourself.

I only have 2 choices filtered air

or oxygen. If I do not have one or the other I cannot make it. No

regular air for me. If my house blows and I cannot plug in my machines,

I must have oxygen.

Hope this helps. If not let me

know i have info. Lots of it. This explains a little.

http://www.emagazine.com/view/?1003

God

Bless !!

dragonflymcs

Mayleen 02/07

ILD / MCS/ Fibro/ RADS/ TMJD/ AR +18

-----

Original Message ----

From: Beth <mbmurtha>

To: Breathe-Support

Sent: Friday, May 23, 2008 1:00:23 PM

Subject: Re: 13 Centers MARY BETH

Mayleen,

I'm just curious about something. Are you certain that you need

supplementary oxygen? I know you have limited ability to have testing

done etc but I'm just wondering if you've maybe got the cart before the

horse? Do you know what your oxygen saturations are?

Beth

Age

48 Fibrotic NSIP 06/06

Change everything.

Love and Forgive

-----

Original Message ----

From: dragonflymcs <dragonflymcs@ yahoo.com>

To: Breathe-Support@ yahoogroups. com

Sent: Friday, May 23, 2008 12:47:37 PM

Subject: Re: 13 Centers MARY BETH

Thank you Beth, I will look at the hospitals. It is a good thing

always to include options. My going to the Hospital is a very difficult

thing. Going to the Grocer is a drama. I am always running from

people. They run from me as well only not for the same reasons. Once I

was in the grocery store and this man told his son to move the "Crazy

Lady" was coming threw. I had not been able to enter a hospital

setting in quite sometime. The last time I went I almost passed out in

10 minutes. I had to stop going until I got the right equipment to go

back.

This week was my first time back

to the hospital with for his appointment. His doctor asked all

kinds of questions about the masks. She sent him to the pulmonologist

to see if he was like me, with lung disease, he has been having chest

pain and difficulty breathing as well.

Had I passed out they would have

killed me. Someone would have picked me up and taken me further into

the hospital which for me is deadly, when I actually needed was to exit

the building immediately. Good thing I barely made it out. My legs

want to give in when this happens, so I literally dragged myself out of

there.

Still looking for others to tell

me about their experiences with different oxygen systems. I am also

thinking of going to look at a few at the nearest medical supply

store. Figure out how to put something together. I now have a ceramic

oxygen mask and tygon tubing. Next is the equipment. My family has been

sensing me stuff. Mainly my Mom and my sister who is 1year and 1 day

older than me. We used to play twins in High School.

The rest do not want to be

bothered. This condition anialates you because people find it too hard

to deal with. Sothey disappear. My mom is trying to get here. Finances

is the problem. While sending me stuff and trying to get here on SS is

impossible. The others won't help. Please look for a post I am asking

for info.

God

Bless !!

dragonflymcs

Mayleen 02/07

ILD / MCS/ Fibro/ RADS/ TMJD/ AR +18

-----

Original Message ----

From: Beth <mbmurthayahoo (DOT) com>

To: Breathe-Support@ yahoogroups. com

Sent: Friday, May 23, 2008 7:36:48 AM

Subject: 13 Centers of Excellence

Mayleen

Here is the link to information about the medical centers that

make up the "13 Centers of Excellence". They are 12 hospitals along

with Duke University that have especially dedicated themselves to

finding a treatment for IPF and various other types of pulmonary

fibrosis.

https://www.

ipfnet.org/

Given your restrictions I'm guessing being seen at one of these

would be logistically difficult for you. But a second opinion (at

least) on your ILD would be very helpful I'm sure.

Beth

Age

48 Fibrotic NSIP 06/06

Change everything.

Love and Forgive

-----

Original Message ----

From: dragonflymcs <dragonflymcs@ yahoo.com>

To: Breathe-Support@ yahoogroups. com

Sent: Friday, May 23, 2008 1:48:45 AM

Subject: Re: Re: Mama-Sher

Gita,

If you have something I would be

glad to look at it. I am new and have not seen what you are speaking

of. Can you send me info. ? I am however going back to immunologist,

I hope I can get there anyway. He was nice before, seemed to care. They

are just at a loss.

God

Bless !!

dragonflymcs

Mayleen 02/07

ILD / MCS/ Fibro/ RADS/ TMJD/ AR +18

-----

Original Message ----

From: Gita Vasudev <gita1_vyahoo (DOT) com>

To: Breathe-Support@ yahoogroups. com

Sent: Thursday, May 22, 2008 11:03:16 PM

Subject: Re: Mama-Sher

--Maykeen ,

there is only one way, you have to find a good doctor, have you

tried all the centres of excellence that Bruce keeps telling us

about? i hope and pray you find one,

love

Geeta

- In Breathe-Support@

yahoogroups. com, dragonflymcs

<dragonflymcs@ ...> wrote:

>

>

> Mama-Sher,

>

> I first was diagnosed the MCS Nov/2006, In Jan 2007, I was

given celebrex, I had a GI Bleed, I was hospitalized, before the

hospital my lungs were clear, I had 2 scans, In the hospital my

lungs were clear, had 1 scan. Two weeks later I went to the

immunologist who had ordered another scan, then I had ILD in 2

weeks.

>

> My physician, when I told him I had MCS ignored me, he gave

me all the wrong stuff, in the hospital I had to stop the nurses

from giving me latex, I had a reaction to antibiotics, and the worse

was the Surgeon, he was wearing cologne although posted all over my

room, door, and chart, in the OR when they took me down to do the

colonoscopy. I complained because I was having difficulty breathing

they ignored me, I asked for oxygen, they gave me nothing, even

refused me my inhaler, got the wrong sheets, gave me plastic to

breathe threw, the respiratory therapist came in so full of dryer

sheet or detergent scent, I could not breathe. All I have to show

for my visit to the big house is IDL. They also could have possibly

suppressed my damaged immune system even more and when I went back

home got it then. One or the other. Word of caution if your home is

mold infested do not let someone give you steroids. Never. I told my

doctor and he ignored

> me. Last time I went to see him, he wanted to give me more

steroids. I said for what, so I can come back next week with

something new. In 1 month I was on 14 medications and gettign

worse. They could not find what was wrong with me. They did not

want to accept the MCS, now I'm paying for it.

>

> Then I go to the pulmonologist the immunologist sent me

to. He asked me to make a decision about having a biopsy, I

agreeded to have it. Then he finds out aboiut MCS and did want to do

the biopsy. He wanted me to go blow threw plastic I was reactive

to.

>

> Basically I needed a colonoscopy, did not get it because of

MCS, needed biopsy of my lung, did not get it because of MCS. I am

without care because of MCS. If anyone in Florida can find a Doctor

who is not afraid of my MCS maybe I can see someone for the ILD.

Meanwhile I am without care. and I have no Immune system, like many

here.

>

> Have any idea where I go from here ????? I am clueless, so I

am trying to deal with it myself by getting info on oxygen systems,

cannot find anyone like me. Who cannot get care because you have a

double whammy docs do not know what to do. If hey cannot figure it

out, that leaves just me.

>

> Basically I have a disease that interferes with the other. It

is probably the most ironic situation to be in. I do not belong here

nor there. No one like me to get imput from. No doctor to guide

me. What is a person to do?

> I know nothing of IDL I am here for someone to teach me

something. However not about meds because I cannot take that, nor

any other medicine. I need oxygen to save our lives when my ceiling

collapses. And I have to figure this out myself with no Doctor.

> God Bless !!

> dragonflymcs

> Mayleen 02/07 ILD / MCS/ Fibro/ RADS/ TMJD/ AR +18

>

>

>

>

> To dragonfly

>

>

> I've been waiting for you to post to us about the disease we have

in common and how you are coping with whatever problems you may be

having or already solved.

> I'd like to hear to hear more about you Mayleen. I'm feeling

overwhelmed with so many other things you post that I don't read all

your posts any longer. I don't want to be rude to you if you are

needing us.

> I know you are dealing with a lot because of your living

conditions and other health problems for which I have no suggestions.

> How are you dealing with a disease we CAN help with?

>

> Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR.

> Don't fret about tomorrow, God is already there!

>

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